I received some very interesting information today from The Association for Frontotemporal Degeneration. They co-funded and co-authored a study on the financial and social impact of FTD. The entire study will be published in Neurology magazine's Nov. 14 issue.
The first thing that caught my interest is the revelation that families dealing with FTD face an economic burden of around $120,000, roughly half that of families dealing with Alzheimer's Disease. This brings the obvious question: Why?
Unfortunately, most doctors are still unfamiliar with FTD. It is often misdiagnosed as Bipolar Disease, depression or another mental illness. They also discovered that it takes, on average, nearly four years to get a correct diagnosis. That means fours years of bouncing around to different doctors, trying to find an answer. It can also mean the expense of multiple medical testing that may be unnecessary, incorrect medications and doctor visits.
FTD most often strikes before the age of 60. Because of the younger age, it is very likely that, prior to diagnosis, both the one with FTD and their spouse were still working and contributing to the household income. FTD compromises the employment of many with the disease. Many are discharged from their employment or come to the realization, on their own, that they can not continue to do their job. Unless they are fortunate enough to have the best of short and long term disability insurance and are eligible for early retirement benefits, the household income is reduced drastically. Trying to survive only on Social Security Disability Insurance is nearly impossible.
The usual caregiver for someone with FTD is the spouse, who is most likely also still employed at the time of diagnosis. In many instances, the spouse must also give up their job in order to provide care for their loved one. If not, there are many expenses incurred for other methods of providing care.
In the study, a year prior to diagnosis, overall household income ranged from $75-95,000. A year after diagnosis, that income had declined nearly half. If the care-giving spouse is still employed, the study found that 37% of caregivers reported not being able to continue working, If they were still working, they reported a median loss of seven full work days over the past four weeks because of issues involving FTD. Two thirds of caregivers also reported declines in their own health. The stress of being a caregiver is enormous.
The financial burden is not just from reduced household income for both the one with FTD and the caregiver, but also from drastically increased medical expenses. Even with the best medical insurance, co-pays and non-covered services can quickly add up to significant amounts.
In many cases, the person with FTD has made poor financial decisions that can also add to the financial burden. If placement into a care facility, such as a nursing home, becomes necessary, financial resources are quickly consumed.
If I may, I will step beyond the study of the financial impact of FTD. Most everyone has dreams of retirement and have many things they are looking forward to once they do. You may call it a "bucket list" or just plans to finally kick back and relax. Perhaps the plans are to travel, perhaps to buy a fishing boat or spend more time on the golf course. FTD steals those plans from the one with FTD, the primary caregiver and perhaps extended family. Plans to spend and enjoy time with the grandchildren become very difficult if not impossible.
With FTD, the memory is usually spared until the end stages and they are fully aware of what is happening. They know what they are missing out on and that their plans for retirement activities may now be impossible. The caregiver, in addition to this being a full time job, 24/7, they usually are forced to give up their own dreams of life in retirement.
All this information explains one way that FTD can force everyone involved into a period of grief, way before the life actually ends. This is another issue that I will write about another time. We don't need another depressing topic on top of the financial burden.
Saturday, October 7, 2017
Saturday, September 30, 2017
Avoiding Conflict
Yes, I do know that I just posted an entry yesterday. I did not have a clear vision of what I was going to write, but since it was Saturday, I forced myself to do it. Guess what? Today really is Saturday! I also remember what I wanted to write about. So you get a bonus entry this week. Thank you FTD - the Great Confuser!
Being a caregiver for someone with FTD is a constant challenge and the demands are often changing. Being someone with FTD is a constant challenge and the demands are often changing. Yep, same for both. I have been both and have often said that I do not know which is more of a burden. They seem pretty equal to me. I do have some suggestions.
If the person with FTD repeatedly keeps doing something incorrectly, lecturing is probably not going to help. This morning, I went out onto the deck. If the deadbolt at the bottom does not spring up the way it should, it drags. It makes a racket and gouges into the door frame. I know that. If I remember right, I was the one who first realized it was happening. Still, my husband insisted on demonstrating it for me so that I "would know." I responded, in irritation, that I know that. He continued the discussion by saying something like, "Then why didn't you do it right?"
Where did he go wrong? When I opened the door, I kind of heard the grinding noise, but my brain is not capable of immediately linking that to the deadbolt dragging. I was focused on going out to clean the window over my kitchen sink. That was all I was focused on. I can only focus on one thing at a time. His pointing it out to me only succeeded in upsetting both of us.
That is the way it is with FTD. I have repeated my mantra on here many times: "One Thing at a Time." That is the limit of my abilities. If you try to add in something else, it prevents my brain from making sense of either thing.
Another trigger point can be avoided as well. When you hear the one with FTD try to explain something to someone or watch them do something and you disagree with the way they are doing it, stop and think about it for a few seconds before acting. Surprisingly, it is entirely possible that they are right. Often times, it may not be the way you would do it or they used to do it, pre-FTD, but it may be a way for them to successfully accomplish the same thing now. The same is true for what they are saying. It may take longer to get the point across, but if you let it go, it might work. It may also not, but it is better to wait a bit and see if they eventually get their point across.
The perils of butting in during these instances are many. First of all, you will be breaking their train of thought so that there is no hope of them finishing what they were trying to say or do. This will lead to total frustration on their part and they, most likely, will lash out at you. That frustration and anger can last the entire day or longer and make absolutely everything more of a challenge for both the one with the FTD and the caregiver.
If it was me, what I would prefer is that my caregiver gently touch me to get my attention. When my focus shifts to them, that is when they can steer me into a different direction. That can be by reminding me of a fact that I am forgetting something, whether it be in a conversation or an attempt to do something. Do not take over. This only accomplishes making me angry and frustrated. It also leaves me with the impression that you think I cannot do it, which leads me to feel worthless. I can assure you, that is one of the worst feelings to someone who used to have a vibrant and worthwhile life.
One thing that I don't believe I have ever written about before is us being a back seat driver. Giving up the driving privilege is extremely difficult for many of us with FTD. If you think about it, we are giving up a huge chunk of our independence and even our sense of self-worth. Not being able to drive makes one totally reliant on others for everything... shopping, doctor visits, visiting friends, just everything. It can be even more difficult in areas of no bus service, no cab service, no Uber.
Think about when you ride with someone else. If you see a peril and you don't know if the driver sees it, what do you do? You probably try to point it out to them. It can also be difficult to not mention a better route if you think you could save time that way. It is that way for someone with FTD as well, only much more so. When you also, in many cases, add in distorted vision, double vision or no peripheral vision, it can cause confusion and panic for the one with FTD.
Among other vision issues, I have totally double vision. What this does, when in a vehicle, is that if a car is approaching in the other lane, I see two, side by side. This makes it appear that one of the two is in our lane. It causes me to be extremely on edge the entire time we are travelling anywhere. If you add in the driver missing a turn, getting close to the edge of the road or just any little variance, that being on edge quickly becomes full blown panic. I do understand how frustrating that can be to the driver and how it could actually cause an accident. I can understand that, consciously, but I cannot stop my reactions. I cannot reason with myself to calm down and trust the driver. It just won't work. Sometimes I think I should ride blindfolded.
One of the things that FTD steals from us is impulse control but, at least for me, it also gives a sense of being out of control at the same time. I can no more withhold my panic, comments and warnings in the car than I could withhold removing my hand from boiling water. Oh, wait, bad example because I have done that, but you get the idea. It is instinctual, it is not something we are deliberately doing.
I will take a moment to mention transportation for seniors. I believe every area must offer it in one form or another, at least in Pennsylvania. In my area, it is van transport. Something to know is that if you have a disability, you do not have to be over 60 or 65, nor must you provide proof of the disability. The cost is minimal. I can use our senior vans, but they make limited runs so I might have to wait an hour or so before and/or after a doctor's visit. It is an option and has been quite useful a few times for me even if it is not the most desirable choice.
The main point I am trying to get across is that we do not do things to deliberately make your life more difficult. We do not do them to pick a fight or demand attention. The way we act or react is instinctual in nature. We do not sit there and think it through and come up with ways that we might irritate you. We react. As I said above, we have no impulse control, we think it, we do it or we say it. We have no empathy. We do not have the ability to wonder how this is going to affect you or anyone else. We have no sympathy. We do not have the ability to see how it affected you and feel sorry for hurting you. We don't realize that we have hurt you.
Don't be afraid, when we do or say something you don't like, to CALMLY tell us how it made you feel. We still might not care but, then again, we might. It also might let you feel a little better as well by getting it out in the open. Try not to raise your voice and say things accusingly even if we are raising ours. This will just add to our frustration and anger. I know this is a tough thing sometimes to ask of a caregiver and that it will often be pretty darned tough to do. I am hoping, though, that you might just see some things through our eyes and be more forgiving of the way we may react to you.
Being a caregiver for someone with FTD is a constant challenge and the demands are often changing. Being someone with FTD is a constant challenge and the demands are often changing. Yep, same for both. I have been both and have often said that I do not know which is more of a burden. They seem pretty equal to me. I do have some suggestions.
If the person with FTD repeatedly keeps doing something incorrectly, lecturing is probably not going to help. This morning, I went out onto the deck. If the deadbolt at the bottom does not spring up the way it should, it drags. It makes a racket and gouges into the door frame. I know that. If I remember right, I was the one who first realized it was happening. Still, my husband insisted on demonstrating it for me so that I "would know." I responded, in irritation, that I know that. He continued the discussion by saying something like, "Then why didn't you do it right?"
Where did he go wrong? When I opened the door, I kind of heard the grinding noise, but my brain is not capable of immediately linking that to the deadbolt dragging. I was focused on going out to clean the window over my kitchen sink. That was all I was focused on. I can only focus on one thing at a time. His pointing it out to me only succeeded in upsetting both of us.
That is the way it is with FTD. I have repeated my mantra on here many times: "One Thing at a Time." That is the limit of my abilities. If you try to add in something else, it prevents my brain from making sense of either thing.
Another trigger point can be avoided as well. When you hear the one with FTD try to explain something to someone or watch them do something and you disagree with the way they are doing it, stop and think about it for a few seconds before acting. Surprisingly, it is entirely possible that they are right. Often times, it may not be the way you would do it or they used to do it, pre-FTD, but it may be a way for them to successfully accomplish the same thing now. The same is true for what they are saying. It may take longer to get the point across, but if you let it go, it might work. It may also not, but it is better to wait a bit and see if they eventually get their point across.
The perils of butting in during these instances are many. First of all, you will be breaking their train of thought so that there is no hope of them finishing what they were trying to say or do. This will lead to total frustration on their part and they, most likely, will lash out at you. That frustration and anger can last the entire day or longer and make absolutely everything more of a challenge for both the one with the FTD and the caregiver.
If it was me, what I would prefer is that my caregiver gently touch me to get my attention. When my focus shifts to them, that is when they can steer me into a different direction. That can be by reminding me of a fact that I am forgetting something, whether it be in a conversation or an attempt to do something. Do not take over. This only accomplishes making me angry and frustrated. It also leaves me with the impression that you think I cannot do it, which leads me to feel worthless. I can assure you, that is one of the worst feelings to someone who used to have a vibrant and worthwhile life.
One thing that I don't believe I have ever written about before is us being a back seat driver. Giving up the driving privilege is extremely difficult for many of us with FTD. If you think about it, we are giving up a huge chunk of our independence and even our sense of self-worth. Not being able to drive makes one totally reliant on others for everything... shopping, doctor visits, visiting friends, just everything. It can be even more difficult in areas of no bus service, no cab service, no Uber.
Think about when you ride with someone else. If you see a peril and you don't know if the driver sees it, what do you do? You probably try to point it out to them. It can also be difficult to not mention a better route if you think you could save time that way. It is that way for someone with FTD as well, only much more so. When you also, in many cases, add in distorted vision, double vision or no peripheral vision, it can cause confusion and panic for the one with FTD.
Among other vision issues, I have totally double vision. What this does, when in a vehicle, is that if a car is approaching in the other lane, I see two, side by side. This makes it appear that one of the two is in our lane. It causes me to be extremely on edge the entire time we are travelling anywhere. If you add in the driver missing a turn, getting close to the edge of the road or just any little variance, that being on edge quickly becomes full blown panic. I do understand how frustrating that can be to the driver and how it could actually cause an accident. I can understand that, consciously, but I cannot stop my reactions. I cannot reason with myself to calm down and trust the driver. It just won't work. Sometimes I think I should ride blindfolded.
One of the things that FTD steals from us is impulse control but, at least for me, it also gives a sense of being out of control at the same time. I can no more withhold my panic, comments and warnings in the car than I could withhold removing my hand from boiling water. Oh, wait, bad example because I have done that, but you get the idea. It is instinctual, it is not something we are deliberately doing.
I will take a moment to mention transportation for seniors. I believe every area must offer it in one form or another, at least in Pennsylvania. In my area, it is van transport. Something to know is that if you have a disability, you do not have to be over 60 or 65, nor must you provide proof of the disability. The cost is minimal. I can use our senior vans, but they make limited runs so I might have to wait an hour or so before and/or after a doctor's visit. It is an option and has been quite useful a few times for me even if it is not the most desirable choice.
The main point I am trying to get across is that we do not do things to deliberately make your life more difficult. We do not do them to pick a fight or demand attention. The way we act or react is instinctual in nature. We do not sit there and think it through and come up with ways that we might irritate you. We react. As I said above, we have no impulse control, we think it, we do it or we say it. We have no empathy. We do not have the ability to wonder how this is going to affect you or anyone else. We have no sympathy. We do not have the ability to see how it affected you and feel sorry for hurting you. We don't realize that we have hurt you.
Don't be afraid, when we do or say something you don't like, to CALMLY tell us how it made you feel. We still might not care but, then again, we might. It also might let you feel a little better as well by getting it out in the open. Try not to raise your voice and say things accusingly even if we are raising ours. This will just add to our frustration and anger. I know this is a tough thing sometimes to ask of a caregiver and that it will often be pretty darned tough to do. I am hoping, though, that you might just see some things through our eyes and be more forgiving of the way we may react to you.
Friday, September 29, 2017
FTD World Awareness Week Wraps Up
This week has been FTD World Awareness Week. I'm sure a lot of my Facebook friends got tired of me posting about it every day. For those of you who did not see yesterday's post, it read:
"Still World FTD Awareness Week: No catchy picture today, just me: Dementia and Alzheimer's is not the same thing. Dementia is not a disease. It is a symptom of many different diseases. Yes, Alzheimer's makes up about 80% of all dementia cases of those over the age of 60. FTD makes up most of the other 20%. However, FTD is the cause of 90% of all cases of dementia under the age of 60. Scary numbers, yet it is not as well known. It does not get recognition nor money for research. There are medications to slow down the progress of Alzheimer's Disease, not a cure, but slows it down. For FTD, there is nothing. It is a life-ending disease, no question about it. There are no medications to slow it down. There is no known treatment. There is no cure." (I must correct myself on this. The Alzheimer's medications slow down or improve the symptoms of the disease, but it does not slow down the disease itself.)
Every time I read about or write about these statistics, I get angry, really angry. Someone reminded me today that FTD was discovered years before Alzheimer's Disease, yet it is still overlooked and misdiagnosed. A fact that I find interesting is that it was explained to me by a local cardiologist. He practices in this same city where the neurologists, from my experience with them, seem to know not much at all about FTD, if anything. Seems like it should be the other way around or that, perhaps, the different specialist should communicate more with each other.
Online this week, I did come across the results of one interesting study that was done at the University of Pennsylvania involving FTD. They were studying to see if it could be diagnosed from a special scan of the retina. The results are showing that it does seem to work for FTD and other diseases that involve dementia. The results show that with FTD, there is significant thinning on the outside of the retina. years before diagnosis by conventional means. I found it fascinating so I thank whichever of my friends posted it for us all to see.
This study really jumped out at me because I started having serious retinal issues about six years or so before I began noticing any symptoms of FTD. I discussed the study with my retinal specialist during a checkup appointment this week. He had not yet heard of the study and seemed interested . He was doubtful, though, that it would have worked in my case since the entirety of my retinas are extremely thin for other reasons. It will be interesting to continue following this study and any results that develop from it. It is exciting to see positive results of any FTD research.
On another personal note, I continue to experience constant headaches on the left side and the left front section of my head. I have explained before how these headaches are worse than the worst migraine headache I have every experienced. In addition to these headaches and my increased difficulty with swallowing, I am feeling extreme paranoia. I already know that FTD is out to get me, no doubt about that. However, now, I am feeling as though everyone is deliberately doing bad things or saying bad things about me. I have no clue as to whether the headache and paranoia have anything to do with each other, but they both are definitely having an effect on my quality of life.
The headaches are having another effect as well. Trying to think through the pain is difficult. The pain is affecting my ability to concentrate and focus. For instance, if I have the television or music on and someone begins to talk to me, they have finished what they are saying before it registers in my brain that they were talking. This gets a little old and frustrating for everyone around me, I am sure. It is a magnification of the "one thing at a time" concept I mention so often.
With World FTD Awareness Week coming to a close, I will now be focusing on preparing for a table display that I am doing in a couple weeks at a local event. This event is for non-professional caregivers and is "Caring for the Caregivers." What a great idea! Instead of speakers as they usually have at the caregiver conferences, they are having massage therapists, music, Reiki, yoga and much more. Sounds like just what the caregivers need. They don't get enough credit for all they do nor do they get a respite from their task.
"Still World FTD Awareness Week: No catchy picture today, just me: Dementia and Alzheimer's is not the same thing. Dementia is not a disease. It is a symptom of many different diseases. Yes, Alzheimer's makes up about 80% of all dementia cases of those over the age of 60. FTD makes up most of the other 20%. However, FTD is the cause of 90% of all cases of dementia under the age of 60. Scary numbers, yet it is not as well known. It does not get recognition nor money for research. There are medications to slow down the progress of Alzheimer's Disease, not a cure, but slows it down. For FTD, there is nothing. It is a life-ending disease, no question about it. There are no medications to slow it down. There is no known treatment. There is no cure." (I must correct myself on this. The Alzheimer's medications slow down or improve the symptoms of the disease, but it does not slow down the disease itself.)
Every time I read about or write about these statistics, I get angry, really angry. Someone reminded me today that FTD was discovered years before Alzheimer's Disease, yet it is still overlooked and misdiagnosed. A fact that I find interesting is that it was explained to me by a local cardiologist. He practices in this same city where the neurologists, from my experience with them, seem to know not much at all about FTD, if anything. Seems like it should be the other way around or that, perhaps, the different specialist should communicate more with each other.
Online this week, I did come across the results of one interesting study that was done at the University of Pennsylvania involving FTD. They were studying to see if it could be diagnosed from a special scan of the retina. The results are showing that it does seem to work for FTD and other diseases that involve dementia. The results show that with FTD, there is significant thinning on the outside of the retina. years before diagnosis by conventional means. I found it fascinating so I thank whichever of my friends posted it for us all to see.
This study really jumped out at me because I started having serious retinal issues about six years or so before I began noticing any symptoms of FTD. I discussed the study with my retinal specialist during a checkup appointment this week. He had not yet heard of the study and seemed interested . He was doubtful, though, that it would have worked in my case since the entirety of my retinas are extremely thin for other reasons. It will be interesting to continue following this study and any results that develop from it. It is exciting to see positive results of any FTD research.
On another personal note, I continue to experience constant headaches on the left side and the left front section of my head. I have explained before how these headaches are worse than the worst migraine headache I have every experienced. In addition to these headaches and my increased difficulty with swallowing, I am feeling extreme paranoia. I already know that FTD is out to get me, no doubt about that. However, now, I am feeling as though everyone is deliberately doing bad things or saying bad things about me. I have no clue as to whether the headache and paranoia have anything to do with each other, but they both are definitely having an effect on my quality of life.
The headaches are having another effect as well. Trying to think through the pain is difficult. The pain is affecting my ability to concentrate and focus. For instance, if I have the television or music on and someone begins to talk to me, they have finished what they are saying before it registers in my brain that they were talking. This gets a little old and frustrating for everyone around me, I am sure. It is a magnification of the "one thing at a time" concept I mention so often.
With World FTD Awareness Week coming to a close, I will now be focusing on preparing for a table display that I am doing in a couple weeks at a local event. This event is for non-professional caregivers and is "Caring for the Caregivers." What a great idea! Instead of speakers as they usually have at the caregiver conferences, they are having massage therapists, music, Reiki, yoga and much more. Sounds like just what the caregivers need. They don't get enough credit for all they do nor do they get a respite from their task.
Saturday, September 23, 2017
Executive Functioning and the Spinning Brain
My brain seems to be going into its "spin cycle" a lot more often these days. Those of you who do not have FTD may not understand what I am talking about. I keep harping about "one thing at a time" and have been since my diagnosis. As the FTD worsens, this principal become more important.
When I am doing something and someone starts to talk to me, my brain goes into that spin cycle and cannot stop to concentrate on either what I am doing or what they are saying. I must pause for around a minute, blank everything from my brain before moving on to focus on the new thing, usually the person talking. I picture it as my brain in a spin cycle and having difficulty finding a cog to slow it down.
I don't know if I am explaining this well enough for anyone to understand. This is part of what is called "executive functioning" and is controlled by the frontal lobe of the brain (Of course, frontal is the "F" of FTD). This is the part of the brain where we analyze and plan a task, organize the steps needed to complete the task and keep to a schedule. It allows us to be flexible and adjust as you go along (cognitive flexibility).
With limited, or no, executive function, due to FTD, the brain has trouble organizing and planning, paying attention to those and things around you, switching focus and shifting between activities and prioritizing tasks. This is the part that is making it nearly impossible for me to switch from one task or thought process to another.
Other problems created by loss of executive function can be not being able to remember details of things. You may remember that you used to build birdhouses, but can no longer remember how you did it. You may be misplacing things or forgetting what you were doing. Damage to the frontal lobe is also what causes difficulty withholding a response or self monitoring of the appropriateness of that response. Now, that part gets me into a lot of trouble sometimes.
I have trouble with all of these things, but right now it is the "Allows us to be flexible and adjust as you go along" part that is impacting me most right now. The loss of that part of my executive functioning is what keeps me from being able to fully realize someone is talking until they are halfway through what they are trying to say. I have to stop doing what I am or thinking about what I am before I can even ask them to repeat themselves. I usually end up shouting something like "Stop, stop!" then waiting however I must to get the brain back in gear before I can pay attention to what they want. Of course other days, I just throw whatever I am holding at the person or calling them nasty things.
This certainly is frustrating for me and I am guessing most of those with FTD. It must also be extremely frustrating to the caregiver and all the other people in our lives. I know how it affects interaction between my husband and me. It is difficult for him to understand how even a tiny little thing occupying my brain can shut down the rest of the brain. It can be something as innocuous as listening to music, leafing through a catalog, or looking at the birds.
It is very exhausting as well. Forcing the brain to keep spinning or bouncing around wears me out. After enough of it (and it doesn't take much), I am done for the day. I am worn out physically, mentally and emotionally. I know that I am not going to function anymore until after a long night's rest. Those are the days I have to send my husband out to pick up dinner or thaw out something in the freezer that he can throw together for us. Odds are that I won't be able decide which option to take. It is also the times that I withdraw to my room by 7 pm.
I still don't know if I explained this well enough. The brain is a complicated thing and what makes sense to someone with FTD does not necessarily make sense to someone with normal brain function. Hopefully, you will understand and, just maybe, it can bring a little more peace to your household.
When I am doing something and someone starts to talk to me, my brain goes into that spin cycle and cannot stop to concentrate on either what I am doing or what they are saying. I must pause for around a minute, blank everything from my brain before moving on to focus on the new thing, usually the person talking. I picture it as my brain in a spin cycle and having difficulty finding a cog to slow it down.
I don't know if I am explaining this well enough for anyone to understand. This is part of what is called "executive functioning" and is controlled by the frontal lobe of the brain (Of course, frontal is the "F" of FTD). This is the part of the brain where we analyze and plan a task, organize the steps needed to complete the task and keep to a schedule. It allows us to be flexible and adjust as you go along (cognitive flexibility).
With limited, or no, executive function, due to FTD, the brain has trouble organizing and planning, paying attention to those and things around you, switching focus and shifting between activities and prioritizing tasks. This is the part that is making it nearly impossible for me to switch from one task or thought process to another.
Other problems created by loss of executive function can be not being able to remember details of things. You may remember that you used to build birdhouses, but can no longer remember how you did it. You may be misplacing things or forgetting what you were doing. Damage to the frontal lobe is also what causes difficulty withholding a response or self monitoring of the appropriateness of that response. Now, that part gets me into a lot of trouble sometimes.
I have trouble with all of these things, but right now it is the "Allows us to be flexible and adjust as you go along" part that is impacting me most right now. The loss of that part of my executive functioning is what keeps me from being able to fully realize someone is talking until they are halfway through what they are trying to say. I have to stop doing what I am or thinking about what I am before I can even ask them to repeat themselves. I usually end up shouting something like "Stop, stop!" then waiting however I must to get the brain back in gear before I can pay attention to what they want. Of course other days, I just throw whatever I am holding at the person or calling them nasty things.
This certainly is frustrating for me and I am guessing most of those with FTD. It must also be extremely frustrating to the caregiver and all the other people in our lives. I know how it affects interaction between my husband and me. It is difficult for him to understand how even a tiny little thing occupying my brain can shut down the rest of the brain. It can be something as innocuous as listening to music, leafing through a catalog, or looking at the birds.
It is very exhausting as well. Forcing the brain to keep spinning or bouncing around wears me out. After enough of it (and it doesn't take much), I am done for the day. I am worn out physically, mentally and emotionally. I know that I am not going to function anymore until after a long night's rest. Those are the days I have to send my husband out to pick up dinner or thaw out something in the freezer that he can throw together for us. Odds are that I won't be able decide which option to take. It is also the times that I withdraw to my room by 7 pm.
I still don't know if I explained this well enough. The brain is a complicated thing and what makes sense to someone with FTD does not necessarily make sense to someone with normal brain function. Hopefully, you will understand and, just maybe, it can bring a little more peace to your household.
Saturday, September 16, 2017
Yes, This Disease Does Suck
If anyone is offended by what I say next, so be it. FTD = F*** This Disease. I actually have a key fob attached to my purse that said "FTD Sucks." Same thing, just cleaned up a bit.
Many caregivers will disagree with this, but those of us with FTD try really hard. We struggle constantly with the symptoms and everyday frustrations. We struggle to overcome them, but if that doesn't work, we hide it as well as we can. That is a small part of why so many people look at us and think there is nothing wrong with us. We are that good at covering up how badly we are doing.
We try not to complain about everything that FTD brings. I believe that if most people had to suffer the FTD headache for just a few days, they would be running to the doctor or emergency room to get relief. I think I have mentioned before that I have dealt with migraine headaches throughout my entire life. If I take my absolute worst migraine, one that would have me hiding in a dark and quiet room, in tears, and multiply it by 2 or 3, I have described an FTD headache. Add that constant headache to all our every day struggles and it can be pretty darned overwhelming.
We try not to complain about how frustrating it is to not be able to do things that used to come naturally. That even includes the difficulty many of us have just walking and talking. Okay, I said we TRY. Some days we are successful, others we are not. There are days when I wouldn't want to live with myself. Yes, I know when I am being like that. I just cannot do anything about it.
There are days that my FTD symptoms are no worse than other days, but I still feel really depressed and should not be allowed to interact with others. On those days, if you ask what is bothering me, I wouldn't be able to figure it out and would probably bite your head off for asking anyway. A couple weeks ago, I wrote about how urinary tract infections can cause this. Other nagging little illnesses can as well. If I get a tiny little cold, I feel like I am at death's door. My body and mind are so worn out dealing with the FTD that there are no reserves left to deal with anything else. Illnesses are not the only thing that cause some days to be worse than others.
That is why, when I am trying to do something that would have been simple before FTD, I throw a temper tantrum or just fall apart. Yesterday, I decided to vacuum out our car because I noticed it needed it. I vacuumed the passenger side first since that was where the electrical outlet is. When I finished that, the trouble started. I could not figure out how to do the other side because the nozzle didn't reach that far. It took several long minutes to figure out to move the vacuum to the other side of the garage. To compound it, that didn't work because the cord wasn't long enough. After much swearing and stomping, I remembered how I used to do it. It is a small portable vac so I simply set the vacuum on the passenger seat, walked around the car and voila!
This event was disheartening enough, but it could have been worse. If someone had observed me being so confused, it would have made it worse, especially if they tried to "help". It seems like at least half the time anyone tries to help, it comes across to me as demeaning and condescending. I end up feeling stupid because I could not figure out how to do it and embarrassed that someone thinks I'm pretty darned stupid as well. What would work best, at least in my case, is to simply say "If you need help, I am right here." then step back. Don't try to take over and, above all, do not laugh! After I start laughing, feel free to join in.
It can be other things that cause our bad days, not just illnesses. Three days ago, after struggling all day with everything being difficult and an overwhelming sense of sadness, I finally remembered that it was my aunt's birthday. My aunt was a huge part of my life. Growing up, she always made sure that I knew I was loved even when I was not receiving that message in my own home. It was in her home that I learned that family members could have disagreements or laugh at each other without hating each other. When I stayed with them, I rarely made it through dinner without my cousins having me laughing so hard I couldn't breathe,usually by making fun of me. That was okay though, because there was also love there. I also learned that when my uncle was being cranky, it didn't have to ruin everyone's day.
Coincidentally, she started showing signs of dementia right around the same time I was being diagnosed. Hers progressed much more rapidly than mine, so I was functioning well enough to be able to act as one of her main caregivers. I had the privilege of sitting at her bedside in the hospital for the final three days of her life. I know that I was letting her know how much she was loved, just as she did for me throughout my entire life. Thank you for indulging me and letting me extol her virtues. She had many of them.
FTD has stolen my ability to know what day or date it is, so my mind was not able to know that it was her birthday. The heart, though, can be much stronger. It knew that it was a special day to remember. Finally realizing it was her birthday, wishing her a happy birthday and thanking her for all she meant to me, even though the wishes needed to be sent to her in heaven, lightened my load and I was able to enjoy the end of the day. I could feel her laughing along with me at that dinner table and reminding me that I can do this.
It is important for caregivers to understand that there can be reasons why we act more nastily some days. We can be feeling ill or can be uncomfortable from something as simple as having my shirt on backwards... again. It is things like this that make me have that feeling that there is something wrong, but can't figure out what. We could be missing someone or missing something we used to do. I spend a lot of hours feeling angry because I can no longer do any artwork.
So, yes, this disease sucks. It sucks for those of us with the disease and it sucks for those who have to live with us. We just have to stick together and muddle through the bad days.
Many caregivers will disagree with this, but those of us with FTD try really hard. We struggle constantly with the symptoms and everyday frustrations. We struggle to overcome them, but if that doesn't work, we hide it as well as we can. That is a small part of why so many people look at us and think there is nothing wrong with us. We are that good at covering up how badly we are doing.
We try not to complain about everything that FTD brings. I believe that if most people had to suffer the FTD headache for just a few days, they would be running to the doctor or emergency room to get relief. I think I have mentioned before that I have dealt with migraine headaches throughout my entire life. If I take my absolute worst migraine, one that would have me hiding in a dark and quiet room, in tears, and multiply it by 2 or 3, I have described an FTD headache. Add that constant headache to all our every day struggles and it can be pretty darned overwhelming.
We try not to complain about how frustrating it is to not be able to do things that used to come naturally. That even includes the difficulty many of us have just walking and talking. Okay, I said we TRY. Some days we are successful, others we are not. There are days when I wouldn't want to live with myself. Yes, I know when I am being like that. I just cannot do anything about it.
There are days that my FTD symptoms are no worse than other days, but I still feel really depressed and should not be allowed to interact with others. On those days, if you ask what is bothering me, I wouldn't be able to figure it out and would probably bite your head off for asking anyway. A couple weeks ago, I wrote about how urinary tract infections can cause this. Other nagging little illnesses can as well. If I get a tiny little cold, I feel like I am at death's door. My body and mind are so worn out dealing with the FTD that there are no reserves left to deal with anything else. Illnesses are not the only thing that cause some days to be worse than others.
That is why, when I am trying to do something that would have been simple before FTD, I throw a temper tantrum or just fall apart. Yesterday, I decided to vacuum out our car because I noticed it needed it. I vacuumed the passenger side first since that was where the electrical outlet is. When I finished that, the trouble started. I could not figure out how to do the other side because the nozzle didn't reach that far. It took several long minutes to figure out to move the vacuum to the other side of the garage. To compound it, that didn't work because the cord wasn't long enough. After much swearing and stomping, I remembered how I used to do it. It is a small portable vac so I simply set the vacuum on the passenger seat, walked around the car and voila!
This event was disheartening enough, but it could have been worse. If someone had observed me being so confused, it would have made it worse, especially if they tried to "help". It seems like at least half the time anyone tries to help, it comes across to me as demeaning and condescending. I end up feeling stupid because I could not figure out how to do it and embarrassed that someone thinks I'm pretty darned stupid as well. What would work best, at least in my case, is to simply say "If you need help, I am right here." then step back. Don't try to take over and, above all, do not laugh! After I start laughing, feel free to join in.
It can be other things that cause our bad days, not just illnesses. Three days ago, after struggling all day with everything being difficult and an overwhelming sense of sadness, I finally remembered that it was my aunt's birthday. My aunt was a huge part of my life. Growing up, she always made sure that I knew I was loved even when I was not receiving that message in my own home. It was in her home that I learned that family members could have disagreements or laugh at each other without hating each other. When I stayed with them, I rarely made it through dinner without my cousins having me laughing so hard I couldn't breathe,usually by making fun of me. That was okay though, because there was also love there. I also learned that when my uncle was being cranky, it didn't have to ruin everyone's day.
Coincidentally, she started showing signs of dementia right around the same time I was being diagnosed. Hers progressed much more rapidly than mine, so I was functioning well enough to be able to act as one of her main caregivers. I had the privilege of sitting at her bedside in the hospital for the final three days of her life. I know that I was letting her know how much she was loved, just as she did for me throughout my entire life. Thank you for indulging me and letting me extol her virtues. She had many of them.
FTD has stolen my ability to know what day or date it is, so my mind was not able to know that it was her birthday. The heart, though, can be much stronger. It knew that it was a special day to remember. Finally realizing it was her birthday, wishing her a happy birthday and thanking her for all she meant to me, even though the wishes needed to be sent to her in heaven, lightened my load and I was able to enjoy the end of the day. I could feel her laughing along with me at that dinner table and reminding me that I can do this.
It is important for caregivers to understand that there can be reasons why we act more nastily some days. We can be feeling ill or can be uncomfortable from something as simple as having my shirt on backwards... again. It is things like this that make me have that feeling that there is something wrong, but can't figure out what. We could be missing someone or missing something we used to do. I spend a lot of hours feeling angry because I can no longer do any artwork.
So, yes, this disease sucks. It sucks for those of us with the disease and it sucks for those who have to live with us. We just have to stick together and muddle through the bad days.
Saturday, September 9, 2017
Deniers, Disbelievers and Ostriches
I try really hard to keep my spirits up and to downplay my FTD when I am around others. Those of us with FTD still want to have some fun and enjoy some bits of a normal life. It is difficult to enjoy being with people when they are acting like I am going to die next week or that I am imagining the disease. That is one end of the spectrum. The other end are those who ask how I am doing but when I start to explain some worsening symptoms, they zone out. They don't want to hear that. They want to hear me lie and say everything is just great. It becomes pretty darned difficult to keep a smile on my face some days.
There are several different categories people, depending on how they react to my FTD. I am pretty darned sure it is the same with the others with FTD as well. It is important to know that I am not in this alone and remind you that nearly 20% of all dementia cases are caused by FTD. They are not all Alzheimer's Disease related.
The first type of people is one I have talked about many times. These are the ones that when I tell them I have the disease they argue with me. They argue that I look too good or I remember too well or I wouldn't be able to do things so well if I had dementia. Many of these people have no knowledge of FTD and don't care to listen. I believe they truly think I don't know what I am talking about. These I call "The Disbelievers".
The second type are the friends and family who are frightened off by the disease. They have disappeared from my life in droves. This is something I hear often from others with FTD. Some times I actually think they believe it is contagious. I suspect that it is more that have cared for or known of someone with Alzheimer's Disease. Since most people think all dementia is Alzheimer's, they are not wanting to deal with it again. Some find excuses to stay away. I don't think this is to explain it to me. It is simply easier to stay away if they convince themselves there is a reason. I admit it is difficult to be around me or anyone else with bvFTD at times. We can end up coming across as being pretty darned obnoxious more often than I would care to admit. Yet, I believed my family and friends would be with me and support me through this journey. Don't get me wrong, there are still a small hand full who totally support, have learned about the disease and try to help. Other than these few, I call them "The Deserters".
I thought these first two groups were the worst. They were the worst in the earliest years of my disease. However, now that most of them have removed themselves from my life, I deal with them being out of it just fine. I understand why they walk away or avoid me, I truly do. It hurt at first, but like the old adage, you learn who your friends are.
Now we come to the next group... "The Ostriches". These are the people who have stood by me but are in denial of my FTD and the resulting dementia. They still think I should be able to do all the things I used to do. Part of this comes from me trying to keep a happy face. Add in the fact that I do push myself to do as much as I can. If someone sees me out doing some yard work or sees that I have baked or cooked something really yummy, they still rave that it is wonderful that I can still do these things. What they don't know, or choose to ignore, is that my energy stores are quickly used up each day. I have about a 2-3 hour window, usually midday, where I can be productive. The things I manage to do are nowhere even close to what I used to be able to do. I am pretty much limited to one activity a day, whether it is spending an hour pulling weeds, cleaning the kitchen floor or going out to lunch. That is it for the day and, sometimes, wears me out enough that I can't do anything the next day either. The ostriches don't see that because they choose not to, whether it be a conscious decision or not. Sometimes they hurt me worse than the ones who have distanced themselves.
The past two weeks have been particularly tough for me. Several of my symptoms have worsened. My legs are getting worse and cause me to stumble and lose my balance more often. Some days, usually toward evening, my right leg will drag. I must step with my left leg, then drag my right leg along, holding on to things as I go along. My headaches have been nearly unbearable and pretty much constant. No medications help them. My speech problems have escalated to the point that it is often too much of an effort to carry on a conversation. I have had trouble swallowing more and more often. I actually became panicked in Sam's Club last week after tasting a food sample and beginning to choke. Fortunately, my husband was with me and kept me calm until I was able to clear my throat. My double vision is significantly worse and never corrects itself anymore, it is constant and adds to the headache issue. It is also extremely frustrating. It used to just double my distant vision, but it is now affecting my near vision. I am frightened that I will no longer be able to read.
The ostriches in my life choose to ignore these changes. I was silly enough that when a friend asked how I was doing, I told the truth. The reaction was "Oh, to me you seem just like you always have." said in a condescending way. I don't believe this person was deliberately brushing my disease aside, but rather was denying it to themselves. The other frustrating thing that occurs is when someone will ask me to do something. I say that I don't want to or would rather not. What I get is those wonderful words, "But you've always been so good at it, much better than I am!" I end up, full of anxiety, and loudly explaining that, yes, I used to but not anymore. I compound this problem by eventually giving in nearly every time. I know I shouldn't, but it becomes easier than arguing or listening to them whine.
The last type of people I will discuss are those who, while having a basic understanding of FTD, do not comprehend the symptoms of it. For instance, the lack of empathy that I have often explained. If you call me to tell me your problems, I will listen, but I don't really care. I have no feelings of empathy or sympathy. I also tell it like it is which comes from the lack of filters between brain and mouth. If I know you are wrong about something, I won't tiptoe around it, I speak it out loud and proud. In addition, if you start complaining about something like a headache you have had for two days, a sore leg or being tired, it doesn't mean much to me. These people are kind of like the ostriches in my life. The difference is that they don't deny there is something wrong with me, they just really, really don't want me to have it. The biggest difference, though, is that they are here for me when I need them.
FTD blunts most emotions which can truly offend people who won't take the time or effort to learn about the disease. I was shocked last week while watching the rescue efforts following last week's hurricane in Houston. Everyone was raving about the wonderful rescues of people and their pets. I was happy they were rescued, but not really touched emotionally like I would have been pre-FTD. One event actually made me shed tears. One of the volunteers risked his life and went into a destroyed house to rescue an animal. He spotted a wooden display case containing a folded U.S. flag. Knowing that it was most likely a treasured keepsake honoring a loved one, he continued to risk his life and got it out. I have one of those flags on my fireplace that was presented to me at my father's funeral and know how much losing it would mean to me. I was so touched by this small act of kindness by one of the heroes.
It is interesting how every once in a while, something will make it through to my emotions. It was a touching, sad yet happy moment in someone else's life that finally allowed me to shed a few tears. That is the way it is with FTD. Yes, we are still the same person we used to be. We just are unable to behave the same way, speak the same way, move the same way or live without pain. Others may not be able to see that we are still in there, but it truly is their loss. When they see someone doing their best to cope with FTD (and other life ending diseases), they should be in awe, not afraid to remain in their lives.
There are several different categories people, depending on how they react to my FTD. I am pretty darned sure it is the same with the others with FTD as well. It is important to know that I am not in this alone and remind you that nearly 20% of all dementia cases are caused by FTD. They are not all Alzheimer's Disease related.
The first type of people is one I have talked about many times. These are the ones that when I tell them I have the disease they argue with me. They argue that I look too good or I remember too well or I wouldn't be able to do things so well if I had dementia. Many of these people have no knowledge of FTD and don't care to listen. I believe they truly think I don't know what I am talking about. These I call "The Disbelievers".
The second type are the friends and family who are frightened off by the disease. They have disappeared from my life in droves. This is something I hear often from others with FTD. Some times I actually think they believe it is contagious. I suspect that it is more that have cared for or known of someone with Alzheimer's Disease. Since most people think all dementia is Alzheimer's, they are not wanting to deal with it again. Some find excuses to stay away. I don't think this is to explain it to me. It is simply easier to stay away if they convince themselves there is a reason. I admit it is difficult to be around me or anyone else with bvFTD at times. We can end up coming across as being pretty darned obnoxious more often than I would care to admit. Yet, I believed my family and friends would be with me and support me through this journey. Don't get me wrong, there are still a small hand full who totally support, have learned about the disease and try to help. Other than these few, I call them "The Deserters".
I thought these first two groups were the worst. They were the worst in the earliest years of my disease. However, now that most of them have removed themselves from my life, I deal with them being out of it just fine. I understand why they walk away or avoid me, I truly do. It hurt at first, but like the old adage, you learn who your friends are.
Now we come to the next group... "The Ostriches". These are the people who have stood by me but are in denial of my FTD and the resulting dementia. They still think I should be able to do all the things I used to do. Part of this comes from me trying to keep a happy face. Add in the fact that I do push myself to do as much as I can. If someone sees me out doing some yard work or sees that I have baked or cooked something really yummy, they still rave that it is wonderful that I can still do these things. What they don't know, or choose to ignore, is that my energy stores are quickly used up each day. I have about a 2-3 hour window, usually midday, where I can be productive. The things I manage to do are nowhere even close to what I used to be able to do. I am pretty much limited to one activity a day, whether it is spending an hour pulling weeds, cleaning the kitchen floor or going out to lunch. That is it for the day and, sometimes, wears me out enough that I can't do anything the next day either. The ostriches don't see that because they choose not to, whether it be a conscious decision or not. Sometimes they hurt me worse than the ones who have distanced themselves.
The past two weeks have been particularly tough for me. Several of my symptoms have worsened. My legs are getting worse and cause me to stumble and lose my balance more often. Some days, usually toward evening, my right leg will drag. I must step with my left leg, then drag my right leg along, holding on to things as I go along. My headaches have been nearly unbearable and pretty much constant. No medications help them. My speech problems have escalated to the point that it is often too much of an effort to carry on a conversation. I have had trouble swallowing more and more often. I actually became panicked in Sam's Club last week after tasting a food sample and beginning to choke. Fortunately, my husband was with me and kept me calm until I was able to clear my throat. My double vision is significantly worse and never corrects itself anymore, it is constant and adds to the headache issue. It is also extremely frustrating. It used to just double my distant vision, but it is now affecting my near vision. I am frightened that I will no longer be able to read.
The ostriches in my life choose to ignore these changes. I was silly enough that when a friend asked how I was doing, I told the truth. The reaction was "Oh, to me you seem just like you always have." said in a condescending way. I don't believe this person was deliberately brushing my disease aside, but rather was denying it to themselves. The other frustrating thing that occurs is when someone will ask me to do something. I say that I don't want to or would rather not. What I get is those wonderful words, "But you've always been so good at it, much better than I am!" I end up, full of anxiety, and loudly explaining that, yes, I used to but not anymore. I compound this problem by eventually giving in nearly every time. I know I shouldn't, but it becomes easier than arguing or listening to them whine.
The last type of people I will discuss are those who, while having a basic understanding of FTD, do not comprehend the symptoms of it. For instance, the lack of empathy that I have often explained. If you call me to tell me your problems, I will listen, but I don't really care. I have no feelings of empathy or sympathy. I also tell it like it is which comes from the lack of filters between brain and mouth. If I know you are wrong about something, I won't tiptoe around it, I speak it out loud and proud. In addition, if you start complaining about something like a headache you have had for two days, a sore leg or being tired, it doesn't mean much to me. These people are kind of like the ostriches in my life. The difference is that they don't deny there is something wrong with me, they just really, really don't want me to have it. The biggest difference, though, is that they are here for me when I need them.
FTD blunts most emotions which can truly offend people who won't take the time or effort to learn about the disease. I was shocked last week while watching the rescue efforts following last week's hurricane in Houston. Everyone was raving about the wonderful rescues of people and their pets. I was happy they were rescued, but not really touched emotionally like I would have been pre-FTD. One event actually made me shed tears. One of the volunteers risked his life and went into a destroyed house to rescue an animal. He spotted a wooden display case containing a folded U.S. flag. Knowing that it was most likely a treasured keepsake honoring a loved one, he continued to risk his life and got it out. I have one of those flags on my fireplace that was presented to me at my father's funeral and know how much losing it would mean to me. I was so touched by this small act of kindness by one of the heroes.
It is interesting how every once in a while, something will make it through to my emotions. It was a touching, sad yet happy moment in someone else's life that finally allowed me to shed a few tears. That is the way it is with FTD. Yes, we are still the same person we used to be. We just are unable to behave the same way, speak the same way, move the same way or live without pain. Others may not be able to see that we are still in there, but it truly is their loss. When they see someone doing their best to cope with FTD (and other life ending diseases), they should be in awe, not afraid to remain in their lives.
Saturday, September 2, 2017
Urinary Tract Infection and Dementia
If you are a regular reader of my blog, I suspect you noticed that the past couple entries were me ranting and being upset. It was a carry over from the way I was feeling for the past 1-2 weeks. I was angry, agitated and pretty darned tough to live with. I was lashing out at things and people, but had no idea why I was feeling that way.
Two days ago, the light bulb went on. For the past couple years, when anyone would describe feeling that way or their caregiver would describe a sudden worsening of dementia symptoms, the first thing I would say was "Have you checked for a urinary tract infections (UTI)?" I did not understand why, but from listening to others, it was quite common for a UTI to cause worsening of symptoms and I would share that information. I pulled out a test strip and, sure enough, I had a UTI! The doctor insisted on seeing me and testing it herself before prescribing.
While with the doctor, she asked me what my symptoms were. I told her that, looking back, I was experiencing more frequent urination, but certainly not enough to really notice. She asked me what caused me to check it. I told her that she would probably think I am crazy but it seems that with FTD, urinary tract infections can make our symptoms worse.
She explained that I am not crazy (though some may dispute this) that it is not just with FTD. She went on to explain that even patients, who have no diagnosed dementia, are brought in because they are showing symptoms of extreme dementia that came on suddenly. It can sometimes as bad as not knowing where they are. All this time, I was mistakenly thinking it was a fluke thing with FTD. An undiagnosed UTI can present with agitation, lethargy, decreased mobility and more Having dementia makes the problems even worse. By the way, I should have suggested she explain this to her staff since the nursing assistant who did my intake did indeed look at me like I was crazy when I explained why I checked. Then again, my paranoia had also been stronger for the same time period.
Urinary Tract Infections are more common in older adults. They can be caused by incontinence or bladder leakage leading to prolonged exposure to urine. Interestingly enough, constipation can aggravate the problem as well because it often prevents the bladder from completely emptying. Some ways to prevent them is to urinate more frequently, perhaps on a regular schedule, keeping the genital area clean after going to the bathroom, and drinking plenty of water. All of these advised precautions can be very difficult for someone with FTD and a real challenge for caregivers.
My familiarity with UTI's is more from when I was younger. Younger people develop more distinctive symptoms such as frequency, pain or burning during urination, pain in the abdomen or back and even fevers. Unfortunately, in older adults, the body begins to react differently to infection. A frequent theory is that it is due to the fact that our immune system is different when we are older. Because the symptoms are not those commonly associated with UTI's, the infection can be not be recognized and and can go untreated for a long period of time. It is possible for the infection to then enter the blood stream, making it life-threatening.
The Alzheimer's Society explains that UTI's can cause behavior changes including confusion, agitation, restlessness, delirium, mobility including falls and general worsening of dementia symptoms. The sooner treatment begins, the better. If the UTI goes untreated for an extended length of time, the worsening of the dementia may become permanent. That raises the question as to how can there be a connection between urinary infections and the brain? It seems that a UTI can be a serious strain on the body, a physical strain and a mental strain. This can also be said about any illness but, in the case of UTI's, that illness can go unrecognized.
Urinary tract infections do indeed play favorites. Women are three times more likely to get them. This is explained by the shortness of the urethra in women compared to men. On the other hand, prostate issues can cause more frequent UTI's in men due to the difficulty in completely emptying the bladder.
I had been complaining for nearly two weeks that I was exhausted. One night, I slept for 16 hours. I had no energy to do much of anything at all. Low and behold, another symptom of a UTI in those with dementia is often fatigue and general malaise. That sure described me. I didn't want to, or have energy to, do anything. My husband and I normally set recurring appointments (B12 shots, chiropractor, hair cuts etc.) on Thursdays. We call it our errand day and it limits the number of times we have to drive to town. After we are done for the day, we usually stop somewhere for lunch, usually at our favorite diner-type restaurant. This past Thursday, he asked me where I would like to eat. He mentioned a few places and I started to panic. He tried to think of quiet, uncrowded places, but I became more and more agitated and insisted he take me home. It took several hours to calm myself down. I usually enjoy these days out and that is how I knew that there must be something was going on and that is what triggered that light bulb coming on.
Now that I have researched this subject, the next time I ask "Have you checked for a UTI?", I will better understand why I am asking. A couple final notes... If the person with FTD begins to get URI's more often that 3 times a year, their doctor may suggest putting them on a prophylactic antibiotic treatment. This usually means taking an antibiotic every day. Test strips for urinary tract infections can now be purchased in most all drug stores. They are pricey, about $12 - $15 for a box of three. When you compare that to three co-pays and the inconvenience of going to the doctor's office every time you think "Could it be a UTI," in my mind is a good value.
Oh, and please go drink some water... and do it often!
Two days ago, the light bulb went on. For the past couple years, when anyone would describe feeling that way or their caregiver would describe a sudden worsening of dementia symptoms, the first thing I would say was "Have you checked for a urinary tract infections (UTI)?" I did not understand why, but from listening to others, it was quite common for a UTI to cause worsening of symptoms and I would share that information. I pulled out a test strip and, sure enough, I had a UTI! The doctor insisted on seeing me and testing it herself before prescribing.
While with the doctor, she asked me what my symptoms were. I told her that, looking back, I was experiencing more frequent urination, but certainly not enough to really notice. She asked me what caused me to check it. I told her that she would probably think I am crazy but it seems that with FTD, urinary tract infections can make our symptoms worse.
She explained that I am not crazy (though some may dispute this) that it is not just with FTD. She went on to explain that even patients, who have no diagnosed dementia, are brought in because they are showing symptoms of extreme dementia that came on suddenly. It can sometimes as bad as not knowing where they are. All this time, I was mistakenly thinking it was a fluke thing with FTD. An undiagnosed UTI can present with agitation, lethargy, decreased mobility and more Having dementia makes the problems even worse. By the way, I should have suggested she explain this to her staff since the nursing assistant who did my intake did indeed look at me like I was crazy when I explained why I checked. Then again, my paranoia had also been stronger for the same time period.
Urinary Tract Infections are more common in older adults. They can be caused by incontinence or bladder leakage leading to prolonged exposure to urine. Interestingly enough, constipation can aggravate the problem as well because it often prevents the bladder from completely emptying. Some ways to prevent them is to urinate more frequently, perhaps on a regular schedule, keeping the genital area clean after going to the bathroom, and drinking plenty of water. All of these advised precautions can be very difficult for someone with FTD and a real challenge for caregivers.
My familiarity with UTI's is more from when I was younger. Younger people develop more distinctive symptoms such as frequency, pain or burning during urination, pain in the abdomen or back and even fevers. Unfortunately, in older adults, the body begins to react differently to infection. A frequent theory is that it is due to the fact that our immune system is different when we are older. Because the symptoms are not those commonly associated with UTI's, the infection can be not be recognized and and can go untreated for a long period of time. It is possible for the infection to then enter the blood stream, making it life-threatening.
The Alzheimer's Society explains that UTI's can cause behavior changes including confusion, agitation, restlessness, delirium, mobility including falls and general worsening of dementia symptoms. The sooner treatment begins, the better. If the UTI goes untreated for an extended length of time, the worsening of the dementia may become permanent. That raises the question as to how can there be a connection between urinary infections and the brain? It seems that a UTI can be a serious strain on the body, a physical strain and a mental strain. This can also be said about any illness but, in the case of UTI's, that illness can go unrecognized.
Urinary tract infections do indeed play favorites. Women are three times more likely to get them. This is explained by the shortness of the urethra in women compared to men. On the other hand, prostate issues can cause more frequent UTI's in men due to the difficulty in completely emptying the bladder.
I had been complaining for nearly two weeks that I was exhausted. One night, I slept for 16 hours. I had no energy to do much of anything at all. Low and behold, another symptom of a UTI in those with dementia is often fatigue and general malaise. That sure described me. I didn't want to, or have energy to, do anything. My husband and I normally set recurring appointments (B12 shots, chiropractor, hair cuts etc.) on Thursdays. We call it our errand day and it limits the number of times we have to drive to town. After we are done for the day, we usually stop somewhere for lunch, usually at our favorite diner-type restaurant. This past Thursday, he asked me where I would like to eat. He mentioned a few places and I started to panic. He tried to think of quiet, uncrowded places, but I became more and more agitated and insisted he take me home. It took several hours to calm myself down. I usually enjoy these days out and that is how I knew that there must be something was going on and that is what triggered that light bulb coming on.
Now that I have researched this subject, the next time I ask "Have you checked for a UTI?", I will better understand why I am asking. A couple final notes... If the person with FTD begins to get URI's more often that 3 times a year, their doctor may suggest putting them on a prophylactic antibiotic treatment. This usually means taking an antibiotic every day. Test strips for urinary tract infections can now be purchased in most all drug stores. They are pricey, about $12 - $15 for a box of three. When you compare that to three co-pays and the inconvenience of going to the doctor's office every time you think "Could it be a UTI," in my mind is a good value.
Oh, and please go drink some water... and do it often!
Sunday, August 27, 2017
Some Days I CAN'T Smile
As long as I was complaining in my last blog that I wrote just a couple days ago, here I go again. At the risk of offending a very dear friend, I must use an example that features her. She shall remain nameless.
I have talked so many times about how frustrating it is when people don't believe me when I tell them that I have Frontotemporal Degeneration. They say things like, "But you seem fine" or "Oh, I do that too, that isn't dementia!" It's not that I want anyone's sympathy that I have this disease. Actually, I guess when they say things like that, it is a compliment that I am functioning well enough, despite the disease, that they cannot pick up on it. Although, if anyone is around me for any more than a brief moment, they should be able to pick up on at least some of my symptoms. I am not alone in this sentiment. It is one I commonly hear from others with FTD.
As I have written before, I understand this denial because mostly everyone who hears "dementia" hears "Alzheimer's" instead. This is one of the reasons I work so hard to educate others and spread the word. It's part of the reason I write this blog. This reaction is so common, I can usually just brush it off. It is yet another kind of denial that frustrates and hurts me more lately.
In my last blog entry, I elaborated on how I can tell that I am getting a worsening or developing a new symptom. Since writing that just a few days ago, I have had other FTD'ers say that this is true for them as well. That makes me feel better, knowing that I am not imagining it. I do not understand how my loved ones can not see the decline. Even if it is gradual, it seems that those who spend much time with me would pick up the signs. Then again, perhaps, when it comes on gradually, it isn't as obvious.
That dear friend I mentioned calls me nearly every night. Sometimes, I just can't handle it. For some reason, I have hated talking on the phone for the last twelve or so years. Precursor of FTD? Perhaps, I don't know. She called me the other night and I was not very responsive and explained that I was sorry but I was really, really grumpy. I explained that I was sleeping 12-16 hours each night which is highly unusual as well as having more trouble with getting my legs to more properly. Still, on another day, I was still grumpy and she responded with something like "Ah, just smile. You know a frown is just a smile upside down." Now, that is a sweet thing to say and I appreciate her attempt to make me smile but it doesn't help. She is not alone in this, so I really, really hope she does not take offense with this. She just happened to provide me with a great example of the frustrations I get with many others as well.
When I am in that time period when I know something is coming on, my speech problems become much more evident. That alone should be enough to trigger "Uh-oh, what's going on?" If someone is observing a worsening symptom, it should be obvious that there is something FTD related going on. I insisted on explaining after she had kind of brushed it off. I explained what was happening and it was just so frustrating that I was struggling to deal with it right then. Later in the conversation, she did pause and say that, like so many others, she thinks that perhaps she is just in denial because deep down, she doesn't want to believe I really have the disease. Denial does not help me.
She isn't the only one to feel and act this way. It isn't just strangers and acquaintances that I encounter who dismiss my disease. It is friends, family and so many more who know me well. I totally understand. If the tables were reversed, I would most likely not want to believe that someone I love had a life-ending disease and would probably try to ignore or explain away the symptoms. I understand it, but it does nothing to help me. It simply adds to my everyday frustrations.
It is the same for those who read, usually on the internet, or hear on daytime TV or elsewhere of some new miracle cure. It can be a supplement to take, a diet to follow or scripture to read. Unfortunately, while there may be a small modicum of truth to the new discovery, it is usually just bunk designed to sell supplements, to sell a book, or sign up for therapy sessions. Beyond the fact that they are most likely just junk science, they are for Alzheimer's, people, not for FTD.
FTD and Alzheimer's Diseases both cause dementia. They are NOT the same disease. As an example, the medications that do seem to work to slow the progression of Alzheimer's Disease and its dementia symptoms are not helpful for FTD. In fact, it has been proven that these drugs can actually worsen FTD. If it is true with these drugs, does it not stand to reason that it just might be true of all the other supposed "cures" for Alzheimer's? My belief of this is so strong, that I am not about to spend my money or risk my health to try them. This is why I get so angry every time I hear someone with FTD say that their doctor put them on the Alzheimer's drugs just in case they might work. Why would you do that? Why, when there is also a stronger case for them worsening the FTD?
Please remember, when you are trying to make light of someone's symptoms or diagnosis to try to make them "feel better," most likely it will make them feel worse. Dismissing the disease because it makes you feel better or you hope it will help me be an ostrich, with my head buried in the sand, only comes across as though you are dismissing me. Try something like, "Oh, I do not like that news, is there anything I can do to help or to make you feel better about it?" Don't minimize what is happening, don't brush it off. I already feel miserable enough.
I have already shut several people out of my life because of this problem. Anyone with FTD does not need negativity surrounding them. I try to be more patient with those who I know are doing it out of love. It isn't easy. This disease isn't easy.
I have talked so many times about how frustrating it is when people don't believe me when I tell them that I have Frontotemporal Degeneration. They say things like, "But you seem fine" or "Oh, I do that too, that isn't dementia!" It's not that I want anyone's sympathy that I have this disease. Actually, I guess when they say things like that, it is a compliment that I am functioning well enough, despite the disease, that they cannot pick up on it. Although, if anyone is around me for any more than a brief moment, they should be able to pick up on at least some of my symptoms. I am not alone in this sentiment. It is one I commonly hear from others with FTD.
As I have written before, I understand this denial because mostly everyone who hears "dementia" hears "Alzheimer's" instead. This is one of the reasons I work so hard to educate others and spread the word. It's part of the reason I write this blog. This reaction is so common, I can usually just brush it off. It is yet another kind of denial that frustrates and hurts me more lately.
In my last blog entry, I elaborated on how I can tell that I am getting a worsening or developing a new symptom. Since writing that just a few days ago, I have had other FTD'ers say that this is true for them as well. That makes me feel better, knowing that I am not imagining it. I do not understand how my loved ones can not see the decline. Even if it is gradual, it seems that those who spend much time with me would pick up the signs. Then again, perhaps, when it comes on gradually, it isn't as obvious.
That dear friend I mentioned calls me nearly every night. Sometimes, I just can't handle it. For some reason, I have hated talking on the phone for the last twelve or so years. Precursor of FTD? Perhaps, I don't know. She called me the other night and I was not very responsive and explained that I was sorry but I was really, really grumpy. I explained that I was sleeping 12-16 hours each night which is highly unusual as well as having more trouble with getting my legs to more properly. Still, on another day, I was still grumpy and she responded with something like "Ah, just smile. You know a frown is just a smile upside down." Now, that is a sweet thing to say and I appreciate her attempt to make me smile but it doesn't help. She is not alone in this, so I really, really hope she does not take offense with this. She just happened to provide me with a great example of the frustrations I get with many others as well.
When I am in that time period when I know something is coming on, my speech problems become much more evident. That alone should be enough to trigger "Uh-oh, what's going on?" If someone is observing a worsening symptom, it should be obvious that there is something FTD related going on. I insisted on explaining after she had kind of brushed it off. I explained what was happening and it was just so frustrating that I was struggling to deal with it right then. Later in the conversation, she did pause and say that, like so many others, she thinks that perhaps she is just in denial because deep down, she doesn't want to believe I really have the disease. Denial does not help me.
She isn't the only one to feel and act this way. It isn't just strangers and acquaintances that I encounter who dismiss my disease. It is friends, family and so many more who know me well. I totally understand. If the tables were reversed, I would most likely not want to believe that someone I love had a life-ending disease and would probably try to ignore or explain away the symptoms. I understand it, but it does nothing to help me. It simply adds to my everyday frustrations.
It is the same for those who read, usually on the internet, or hear on daytime TV or elsewhere of some new miracle cure. It can be a supplement to take, a diet to follow or scripture to read. Unfortunately, while there may be a small modicum of truth to the new discovery, it is usually just bunk designed to sell supplements, to sell a book, or sign up for therapy sessions. Beyond the fact that they are most likely just junk science, they are for Alzheimer's, people, not for FTD.
FTD and Alzheimer's Diseases both cause dementia. They are NOT the same disease. As an example, the medications that do seem to work to slow the progression of Alzheimer's Disease and its dementia symptoms are not helpful for FTD. In fact, it has been proven that these drugs can actually worsen FTD. If it is true with these drugs, does it not stand to reason that it just might be true of all the other supposed "cures" for Alzheimer's? My belief of this is so strong, that I am not about to spend my money or risk my health to try them. This is why I get so angry every time I hear someone with FTD say that their doctor put them on the Alzheimer's drugs just in case they might work. Why would you do that? Why, when there is also a stronger case for them worsening the FTD?
Please remember, when you are trying to make light of someone's symptoms or diagnosis to try to make them "feel better," most likely it will make them feel worse. Dismissing the disease because it makes you feel better or you hope it will help me be an ostrich, with my head buried in the sand, only comes across as though you are dismissing me. Try something like, "Oh, I do not like that news, is there anything I can do to help or to make you feel better about it?" Don't minimize what is happening, don't brush it off. I already feel miserable enough.
I have already shut several people out of my life because of this problem. Anyone with FTD does not need negativity surrounding them. I try to be more patient with those who I know are doing it out of love. It isn't easy. This disease isn't easy.
Friday, August 25, 2017
Little Things Add Up
I started out last week's blog entry by complaining that I had just done something that caused me to lose a big part of what I had written. I just did it again, but this time, I lost the entire post... all of it! I click "save" every paragraph or so even though it is supposed to save automatically It used to be that if I did lose it, I could somehow get it back as a draft. If only this damned FTD would let me remember how to do that.
Ironically, my entire blog this week was about how it seems to be the little things that upset me the most. To me, this is not a little thing, it's a biggie. I will rewrite what I can remember even though I now have an even worse headache than what I was talking about.
I have a theory. I have alluded to it before but since I have absolutely no scientific evidence or others' experiences to back me up, it is just a theory. I truly believe that my brain knows when it is about to lose more function. I develop the worst of my FTD headaches... the ones that no pain medication can touch. They are kind of like my worst migraine x5. These headaches always seem to be a precursor to worsening symptoms. The other indicator to me is the need for sleep. All of a sudden I will be needing much more sleep than usual.
I have had the headache for a week or so now. Then, yesterday, after an exciting afternoon out of getting a haircut and having a late lunch at our usual restaurant (Yes, you are right, not exciting and should have not worn me out either,) I needed to lay down as soon as we got home. That was about 4:00 in the afternoon. I usually don't do naps so that I am able to sleep through the night. I woke up about four hours later after the phone had rung so I got up and had something cold to drink, visited the bathroom and went back to bed. I tried to read for a little while, but soon fell back asleep. This morning I was up before the crack of noon. Okay, it was 11:45, but that is before noon. FTD has killed most of my math skills, but I still think that was about 16 hours of sleep.
My thought at that point was that with that much sleep, at least I was rested enough to face the day. I wish! I settled down on the couch with my coffee and newspaper and except for some of the dreadful news, I was nicely relaxed. Then my husband prepared himself a little lunch, sat down on the other sofa and turned on the TV to watch a game show. It was only after it was on that he asked if it was okay with me. I thought it would be fine since now that he has hearing aids, he sets the volume so low that I can barely hear it even though my hearing is pretty darned good for a 64-year old. I was being pretty successful at blocking it out when he started asking "What did he say?" repeatedly. I was not exactly kind when I answered "I don't know, I can't hear it!" I took out my frustration by mopping the kitchen floor, so maybe it was a good thing anyway. After doing that, I retreated to my room which is my sanctuary.
My room does not have a phone and since my husband hates to answer the phone even though he can now hear on the phone. I usually bring a handset in with me. A couple hours after coming in here, the phone rang and I answered it. It was just someone calling to confirm an upcoming appointment. Half way through this brief conversation, he stuck his head in and asked who it was. I ignored him, said goodbye and hung up. He then goes on to explain that he was waiting for a call from Don. That was all the info I needed, but he elaborated that he had called Don and he wasn't home so he left a message. He explained what had prompted him to call and what answer he wanted for his question and all his reasoning behind it, including past experiences and the benefits it would bring him. He was greeted with a very rude "Whatever!!!"
That was enough reason to take a break so I went out to the kitchen to get a drink. Since I was calm by then, I stopped by him and explained how and why it would have been better to simply have said, "I am expecting a call from Don." Period, end of story. I wish. No, then he had to explain why he thought I should know all the minutiae again. To top it off, I spilled part of my drink while trying to pour it. That was the proverbial straw that broke the camel's back. I then said "Maybe I should just go somewhere and curl up and die." He laughed. I simply turned and said "When I say something like that, I am saying how I am truly feeling." No response.
It is not at all unusual for someone with FTD to have the feelings of wanting to escape it all but don't worry, I am not going to do that. My daughter would kill me if I did. Yes, that is a feeble attempt at humor. Seriously, after my father's suicide ripped apart our family, I did promise her I would never do that to her. Of course that was before FTD, but I know what it did to me and I would never do that to her, no matter how bad it gets.
The daily frustrations that mount up and ruin the day can be simpler things as well. Too many calls from a telemarketer, not being able to remember something, being unable to come up with the words you want, stumbling too often or just about anything else can do it. I hope my husband will forgive me for telling of today's events. It is only because we are always together that our daily life so often provides examples for what I am trying to talk about.
I will stop complaining now about how the little things add up into a huge frustrations. I will stop because all of a sudden, I need a nap. Plus I need to post it quickly so I don't lose it again.
PS: I don't believe this! After I posted this blog, I found the draft of it I had written before along with the one from last week. So I'm happy to know that I was saving it, but still wonder where the heck it was hiding!
Ironically, my entire blog this week was about how it seems to be the little things that upset me the most. To me, this is not a little thing, it's a biggie. I will rewrite what I can remember even though I now have an even worse headache than what I was talking about.
I have a theory. I have alluded to it before but since I have absolutely no scientific evidence or others' experiences to back me up, it is just a theory. I truly believe that my brain knows when it is about to lose more function. I develop the worst of my FTD headaches... the ones that no pain medication can touch. They are kind of like my worst migraine x5. These headaches always seem to be a precursor to worsening symptoms. The other indicator to me is the need for sleep. All of a sudden I will be needing much more sleep than usual.
I have had the headache for a week or so now. Then, yesterday, after an exciting afternoon out of getting a haircut and having a late lunch at our usual restaurant (Yes, you are right, not exciting and should have not worn me out either,) I needed to lay down as soon as we got home. That was about 4:00 in the afternoon. I usually don't do naps so that I am able to sleep through the night. I woke up about four hours later after the phone had rung so I got up and had something cold to drink, visited the bathroom and went back to bed. I tried to read for a little while, but soon fell back asleep. This morning I was up before the crack of noon. Okay, it was 11:45, but that is before noon. FTD has killed most of my math skills, but I still think that was about 16 hours of sleep.
My thought at that point was that with that much sleep, at least I was rested enough to face the day. I wish! I settled down on the couch with my coffee and newspaper and except for some of the dreadful news, I was nicely relaxed. Then my husband prepared himself a little lunch, sat down on the other sofa and turned on the TV to watch a game show. It was only after it was on that he asked if it was okay with me. I thought it would be fine since now that he has hearing aids, he sets the volume so low that I can barely hear it even though my hearing is pretty darned good for a 64-year old. I was being pretty successful at blocking it out when he started asking "What did he say?" repeatedly. I was not exactly kind when I answered "I don't know, I can't hear it!" I took out my frustration by mopping the kitchen floor, so maybe it was a good thing anyway. After doing that, I retreated to my room which is my sanctuary.
My room does not have a phone and since my husband hates to answer the phone even though he can now hear on the phone. I usually bring a handset in with me. A couple hours after coming in here, the phone rang and I answered it. It was just someone calling to confirm an upcoming appointment. Half way through this brief conversation, he stuck his head in and asked who it was. I ignored him, said goodbye and hung up. He then goes on to explain that he was waiting for a call from Don. That was all the info I needed, but he elaborated that he had called Don and he wasn't home so he left a message. He explained what had prompted him to call and what answer he wanted for his question and all his reasoning behind it, including past experiences and the benefits it would bring him. He was greeted with a very rude "Whatever!!!"
That was enough reason to take a break so I went out to the kitchen to get a drink. Since I was calm by then, I stopped by him and explained how and why it would have been better to simply have said, "I am expecting a call from Don." Period, end of story. I wish. No, then he had to explain why he thought I should know all the minutiae again. To top it off, I spilled part of my drink while trying to pour it. That was the proverbial straw that broke the camel's back. I then said "Maybe I should just go somewhere and curl up and die." He laughed. I simply turned and said "When I say something like that, I am saying how I am truly feeling." No response.
It is not at all unusual for someone with FTD to have the feelings of wanting to escape it all but don't worry, I am not going to do that. My daughter would kill me if I did. Yes, that is a feeble attempt at humor. Seriously, after my father's suicide ripped apart our family, I did promise her I would never do that to her. Of course that was before FTD, but I know what it did to me and I would never do that to her, no matter how bad it gets.
The daily frustrations that mount up and ruin the day can be simpler things as well. Too many calls from a telemarketer, not being able to remember something, being unable to come up with the words you want, stumbling too often or just about anything else can do it. I hope my husband will forgive me for telling of today's events. It is only because we are always together that our daily life so often provides examples for what I am trying to talk about.
I will stop complaining now about how the little things add up into a huge frustrations. I will stop because all of a sudden, I need a nap. Plus I need to post it quickly so I don't lose it again.
PS: I don't believe this! After I posted this blog, I found the draft of it I had written before along with the one from last week. So I'm happy to know that I was saving it, but still wonder where the heck it was hiding!
Sunday, August 20, 2017
Trying To Do Some Good
Grrr... I did it again. I had this post almost completed then somehow deleted it. I wish my FTD would allow me to figure out how I keep doing this! Oh well, I will go with the belief that by having to redo it, I will find even more inspiration.
At the risk of sounding like I am tooting my own horn, I am going to talk about a wonderful event that happened two days ago. Our local newspaper, the Altoona Mirror and a large medical practice sponsored their annual Health O Rama at the local mall. In addition to speakers throughout the day and free testing that was being done, there were close to 50 table displays by medical related organizations, including a few non-profits. When I first contacted the newspaper about setting up a display for the AFTD, we were welcomed with open arms.
We had a lot of information and handouts for the attendees and I had my sister, also a volunteer for AFTD, to help. The newspaper estimated that approximately 1000 people visited the event. We had a significant percentage of those stop by our table for more information. It was a very rewarding experience for both of us and we already have signed up to display at an event next month at a different location.
When I was preparing for the event, I kept saying that if we reached just one person who needed to know about FTD, it would be worth every bit of the effort. We had several people who were extremely interested and they were planning to either contact the AFTD helpline or go to their website for more information. The biggest reward came in the last ten minutes of the event. A woman came running up, literally running and out of breath. She was staffing a different display at the other end of the mall and someone, knowing her family was struggling with someone who was displaying "strange symptoms," mentioned our display about a "different" kind of dementia.
The light bulbs just kept going on above her head the longer she talked to us and read the information. She kept thanking us for being there because she was definitely going to insist that the family member be evaluated for FTD. Like most of us with FTD, the family member was not displaying the recognized symptoms of Alzheimer's yet they were convinced there was something wrong. I will not say that I hope they get a diagnosis of FTD, because I would not wish that on anyone. I do hope though that they will pursue in getting a proper diagnosis.
It was not easy for me to do this event, to organize it, set it up and talk to people for four hours. By the fourth hour, I was often having to turn to my sister to finish saying what I was trying to say. When we packed up and got home, I realized that I could not lift my right foot. I had to step with my left and drag my right. It is the same side that the brain does not always communicate with properly, so I wasn't too worried. I slept over twelve hours that night and by the morning it was back to my usual "normal". I am sure there are lot of ways I could have improved the event, but I don't care (and it's not just from my overload of apathy) because I know I made my goal of reaching at least one person.
This experience of worsening symptoms occurring when stressed and/or tired is something I forget to mention much. It does happen and it is always a huge relief when I bounce back once I am rested and de-stressed. This is why those of us with FTD remind each other that when in a stressful situation, to take a break, find a quiet spot and recharge. If we try to push through it, the signs just keep getting worse.
I was determined to display at this event even though I usually avoid the mall at all costs I only shop at stand-alone stores or online. The mall has too many stores, too many colors, too many noises and just too many people. Add in background music and the vibration in the floor that they keep telling me is normal, and it leads to a quick overload. Looking back to before I was diagnosed with FTD, there was a warning sign I missed. I was at the mall with my daughter and my sister. We were on the top floor (the one that vibrates), it was crowded, too much noise and too much stimulation from all the stores. I stopped in my tracks and just kept saying "Get me out of here" over and over. They did and I was fine once I calmed down. It is experiences like this one that make it difficult for those of us with FTD to know exactly when the signs of the disease started. There are situations that occurred 25 years or so ago that, looking back, seem like they could have been precursors to the disease.
I have digressed, as usual, from the point of this blog entry. While doing this display was rewarding beyond belief, there were also some frustrations. They were the same frustrations that I, along with most of the other FTD'ers I know, experience way too often. I had the people who walked up and said that they are dealing with 'it' also. It only took a sentence or two of them complaining about their loved one with dementia to realize that they were dealing with Alzheimer's. It was wasted breath to explain how FTD is different.
One woman in particular came back three times and wanted to talk about Alzheimer's and how to deal with situations, like sundowning. It was obvious to us that the way she said she was handling it was probably worsening it rather than helping. We kept suggesting that she go online and look it up or go to one of the many Alzheimer's sites for help or to even go to the AFTD website. Often times, caregivers just need to vent and have someone listen to them, this is totally understandable. but this woman went beyond that. I will admit that I said a little prayer of thanks that she was not my caregiver! I was so proud of myself that I didn't blow up at her. I kept talking calmly and repeating the suggestion to go to the websites and wishing her well. I also kept explaining that my experience was with FTD, not Alzheimer's, which she either could not or would not grasp. Not bad for someone with FTD dealing with one of our most usual frustrations. At least no one came up and said "Yeah, I do that too!"
I am so happy that I took the AFTD's volunteer training 18 or so months ago. I am also happy that they realize that even though I have FTD, I still have abilities and value. I am touched beyond belief that my sister has also become a volunteer. What a sign of sisterly love! There is just something about this disease that makes many of us become determined to educate the world and try to do something to help solve its mysteries. I'm sure they, as well as I am, are determined that if they have to have this horrid disease they are going to make some good come out of it if they can. As long as I can talk or write, I will be trying to spread the word about FTD and the work of the AFTD.
At the risk of sounding like I am tooting my own horn, I am going to talk about a wonderful event that happened two days ago. Our local newspaper, the Altoona Mirror and a large medical practice sponsored their annual Health O Rama at the local mall. In addition to speakers throughout the day and free testing that was being done, there were close to 50 table displays by medical related organizations, including a few non-profits. When I first contacted the newspaper about setting up a display for the AFTD, we were welcomed with open arms.
We had a lot of information and handouts for the attendees and I had my sister, also a volunteer for AFTD, to help. The newspaper estimated that approximately 1000 people visited the event. We had a significant percentage of those stop by our table for more information. It was a very rewarding experience for both of us and we already have signed up to display at an event next month at a different location.
When I was preparing for the event, I kept saying that if we reached just one person who needed to know about FTD, it would be worth every bit of the effort. We had several people who were extremely interested and they were planning to either contact the AFTD helpline or go to their website for more information. The biggest reward came in the last ten minutes of the event. A woman came running up, literally running and out of breath. She was staffing a different display at the other end of the mall and someone, knowing her family was struggling with someone who was displaying "strange symptoms," mentioned our display about a "different" kind of dementia.
The light bulbs just kept going on above her head the longer she talked to us and read the information. She kept thanking us for being there because she was definitely going to insist that the family member be evaluated for FTD. Like most of us with FTD, the family member was not displaying the recognized symptoms of Alzheimer's yet they were convinced there was something wrong. I will not say that I hope they get a diagnosis of FTD, because I would not wish that on anyone. I do hope though that they will pursue in getting a proper diagnosis.
It was not easy for me to do this event, to organize it, set it up and talk to people for four hours. By the fourth hour, I was often having to turn to my sister to finish saying what I was trying to say. When we packed up and got home, I realized that I could not lift my right foot. I had to step with my left and drag my right. It is the same side that the brain does not always communicate with properly, so I wasn't too worried. I slept over twelve hours that night and by the morning it was back to my usual "normal". I am sure there are lot of ways I could have improved the event, but I don't care (and it's not just from my overload of apathy) because I know I made my goal of reaching at least one person.
This experience of worsening symptoms occurring when stressed and/or tired is something I forget to mention much. It does happen and it is always a huge relief when I bounce back once I am rested and de-stressed. This is why those of us with FTD remind each other that when in a stressful situation, to take a break, find a quiet spot and recharge. If we try to push through it, the signs just keep getting worse.
I was determined to display at this event even though I usually avoid the mall at all costs I only shop at stand-alone stores or online. The mall has too many stores, too many colors, too many noises and just too many people. Add in background music and the vibration in the floor that they keep telling me is normal, and it leads to a quick overload. Looking back to before I was diagnosed with FTD, there was a warning sign I missed. I was at the mall with my daughter and my sister. We were on the top floor (the one that vibrates), it was crowded, too much noise and too much stimulation from all the stores. I stopped in my tracks and just kept saying "Get me out of here" over and over. They did and I was fine once I calmed down. It is experiences like this one that make it difficult for those of us with FTD to know exactly when the signs of the disease started. There are situations that occurred 25 years or so ago that, looking back, seem like they could have been precursors to the disease.
I have digressed, as usual, from the point of this blog entry. While doing this display was rewarding beyond belief, there were also some frustrations. They were the same frustrations that I, along with most of the other FTD'ers I know, experience way too often. I had the people who walked up and said that they are dealing with 'it' also. It only took a sentence or two of them complaining about their loved one with dementia to realize that they were dealing with Alzheimer's. It was wasted breath to explain how FTD is different.
One woman in particular came back three times and wanted to talk about Alzheimer's and how to deal with situations, like sundowning. It was obvious to us that the way she said she was handling it was probably worsening it rather than helping. We kept suggesting that she go online and look it up or go to one of the many Alzheimer's sites for help or to even go to the AFTD website. Often times, caregivers just need to vent and have someone listen to them, this is totally understandable. but this woman went beyond that. I will admit that I said a little prayer of thanks that she was not my caregiver! I was so proud of myself that I didn't blow up at her. I kept talking calmly and repeating the suggestion to go to the websites and wishing her well. I also kept explaining that my experience was with FTD, not Alzheimer's, which she either could not or would not grasp. Not bad for someone with FTD dealing with one of our most usual frustrations. At least no one came up and said "Yeah, I do that too!"
I am so happy that I took the AFTD's volunteer training 18 or so months ago. I am also happy that they realize that even though I have FTD, I still have abilities and value. I am touched beyond belief that my sister has also become a volunteer. What a sign of sisterly love! There is just something about this disease that makes many of us become determined to educate the world and try to do something to help solve its mysteries. I'm sure they, as well as I am, are determined that if they have to have this horrid disease they are going to make some good come out of it if they can. As long as I can talk or write, I will be trying to spread the word about FTD and the work of the AFTD.
Saturday, August 12, 2017
Impulsive Behaviors
This morning, while lying in bed but wide awake, I wondered what subject I should write about today. I came up with a few ideas and really liked a couple of them. Just as some things seem to happen, a couple things occurred today totally changed my mind. Last week I attempted to describe how and why we blow up or break down. This week, I want to talk about something that also occurs in the life of someone caring for or being someone with FTD.
One symptom of bvFTD, as well as all the other categories under the FTD umbrella, is increased impulsive behaviors. This is also sometimes described as the loss of filters between the brain and our actions. One example that I often use is the day I decided to go out for our mail. Our mailbox is across the little street we live on. I exited my house, walked up the drive and began crossing the street. I totally forgot about the huge and heavy trucks that sometimes travel our road to get to and from a quarry. I learned 3 things that day: these trucks do not stop on a dime, the horns are very loud when the driver is laying into them and those same drivers have a very vast variety of swear words in their repertoire.
I was very lucky that day. If that driver had not been paying close attention, I would have become roadkill. This event was a total result of impulsive behaviors. I knew I wanted to get to the other side of the street but gave no thought about any risks involved.
That increased impulsive behavior is also why many of us with FTD make poor financial decisions. We see something in a store or on the internet and think it would nice to have or it's pretty, so we buy it. We don't stop to think about whether we have the financial resources to be able to afford that purchase or whether we will still be able to purchase groceries the next day. We also don't bother to figure out if we have any use for it, but danged if it didn't look good! This can be even worse. Many with FTD become shoplifters. They do not intend to break the law or steal. They simply see something they like and pick it up and take it. It's an impulse. There is a defective or missing filter between brain and actions. We see it, we want it and now we have it. Not only does this cause huge arguments between the caregiver and the one with FTD, it also can cause huge legal issues as well.
Another large part of this FTD symptom is spewing out words without thinking about how they might offend, be inappropriate and just tick people off. This is easiest to explain as the lack of a filter between brain and speech. We no longer have the ability to think before we speak. I have experienced this problem hundreds of time. If I think it, I say it. A friend is wearing a green shirt. Instead of saying something innocuous like "You look nice today," I may say "that color looks awful on you." I have also developed a very large vocabulary of inappropriate and offensive words. This is not in character for me. I have been known to cuss a time or two or a few hundred but I never used the horribly inappropriate and offensive words that I use now. If I get angry, you are going to hear the "F word" at least a couple times. This was not my norm prior to FTD.
Another big part of inappropriate speaking can be of a sexual nature. This can be telling a dirty joke to your friends at church or in the workplace. It can be making sexual innuendos to people, even strangers. Just like shoplifting, this can get you into huge trouble.
Another issue for increased impulsive behavior can be wandering. Why those with dementia often think they need to go home or need to go somewhere else is an involved problem. Part of the answer is that they just do not feel comfortable in their surroundings anymore and want to go find their home where they remember they loved to be, even if they are still in that same home. It is difficult to eliminate the impulsive behavior problem from the wandering issue. Things like is it day or night, do I know where I am going, am I dressed appropriately, will anyone know where I have gone and so many others do not occur to them before they wander off.
These activities, the wandering, the swearing, the shoplifting, the impulse buying and the insults, are not intentional. This is difficult for many who do not have FTD to understand. Responses are often things like "It goes against logic. What do you mean he doesn't know that what he just said to me was an insult?" " Of course she knew we couldn't afford that new sofa." "He just doesn't bother to stop and think." "Of course he knows it was wrong to take that box of cookies without paying for it."
"How in the world could she say such a thing to me? She knew I would be hurt." "He's just doing that to irritate me."
Hearing someone explain that "It wasn't them doing that, it was the disease!" gets old really fast. It is human nature to be insulted and frustrated, even angry. Think of the impulsive things that a child does or says because they have not yet learned that it wrong to do so. This is the same idea, but in reverse. They used to know but that knowledge has been stolen from them by the disease.
It is important for caregivers, loved ones and anyone else involved in the life of someone with FTD to try to stop before reacting. The one with FTD does not have filters, but the ones affected do. Take a deep breath and count to ten before you react. Remind yourself that it IS the disease. Would the person they were before the disease have done/said that? Reacting in anger and frustration is not going calm the issue, it will make it worse for both of you.
On the other hand, if you do react with anger, frustration or any other way that escalates the situation, don't beat yourself up. Some days, it all adds up and takes its toll or even one event is too much to deal with. Last time I checked, all caregivers were humans too. Just like the one with FTD, the caregivers have limits to what they can deal with at any particular time. I am not going to go into things like the importance of respite care in this blog. The needs of the caregivers is a huge subject on its own that will have to wait until another blog entry.
This blog came about after a couple things happened to me today. Someone was telling me how I was saying the wrong things and not properly thinking about things before I said them. Duh! Why didn't I think of that? Another was questioning why I reacted to something the way I did. The totally honest answer of "I don't know" was apparently unacceptable. The scary part is that these same people claim to others that they FTD. To them, I would like to say that just because you know someone with FTD, have read a few articles or even live with someone who has the disease, it does not mean you understand what we are going through. Your life experiences are interesting and I like to hear them but they just don't apply. I truly appreciate your effort to understand but, please, do not try to tell me, after the fact, what I should do or how I should react to things. There is no way for you to give me back my filters. I wish you could.
One symptom of bvFTD, as well as all the other categories under the FTD umbrella, is increased impulsive behaviors. This is also sometimes described as the loss of filters between the brain and our actions. One example that I often use is the day I decided to go out for our mail. Our mailbox is across the little street we live on. I exited my house, walked up the drive and began crossing the street. I totally forgot about the huge and heavy trucks that sometimes travel our road to get to and from a quarry. I learned 3 things that day: these trucks do not stop on a dime, the horns are very loud when the driver is laying into them and those same drivers have a very vast variety of swear words in their repertoire.
I was very lucky that day. If that driver had not been paying close attention, I would have become roadkill. This event was a total result of impulsive behaviors. I knew I wanted to get to the other side of the street but gave no thought about any risks involved.
That increased impulsive behavior is also why many of us with FTD make poor financial decisions. We see something in a store or on the internet and think it would nice to have or it's pretty, so we buy it. We don't stop to think about whether we have the financial resources to be able to afford that purchase or whether we will still be able to purchase groceries the next day. We also don't bother to figure out if we have any use for it, but danged if it didn't look good! This can be even worse. Many with FTD become shoplifters. They do not intend to break the law or steal. They simply see something they like and pick it up and take it. It's an impulse. There is a defective or missing filter between brain and actions. We see it, we want it and now we have it. Not only does this cause huge arguments between the caregiver and the one with FTD, it also can cause huge legal issues as well.
Another large part of this FTD symptom is spewing out words without thinking about how they might offend, be inappropriate and just tick people off. This is easiest to explain as the lack of a filter between brain and speech. We no longer have the ability to think before we speak. I have experienced this problem hundreds of time. If I think it, I say it. A friend is wearing a green shirt. Instead of saying something innocuous like "You look nice today," I may say "that color looks awful on you." I have also developed a very large vocabulary of inappropriate and offensive words. This is not in character for me. I have been known to cuss a time or two or a few hundred but I never used the horribly inappropriate and offensive words that I use now. If I get angry, you are going to hear the "F word" at least a couple times. This was not my norm prior to FTD.
Another big part of inappropriate speaking can be of a sexual nature. This can be telling a dirty joke to your friends at church or in the workplace. It can be making sexual innuendos to people, even strangers. Just like shoplifting, this can get you into huge trouble.
Another issue for increased impulsive behavior can be wandering. Why those with dementia often think they need to go home or need to go somewhere else is an involved problem. Part of the answer is that they just do not feel comfortable in their surroundings anymore and want to go find their home where they remember they loved to be, even if they are still in that same home. It is difficult to eliminate the impulsive behavior problem from the wandering issue. Things like is it day or night, do I know where I am going, am I dressed appropriately, will anyone know where I have gone and so many others do not occur to them before they wander off.
These activities, the wandering, the swearing, the shoplifting, the impulse buying and the insults, are not intentional. This is difficult for many who do not have FTD to understand. Responses are often things like "It goes against logic. What do you mean he doesn't know that what he just said to me was an insult?" " Of course she knew we couldn't afford that new sofa." "He just doesn't bother to stop and think." "Of course he knows it was wrong to take that box of cookies without paying for it."
"How in the world could she say such a thing to me? She knew I would be hurt." "He's just doing that to irritate me."
Hearing someone explain that "It wasn't them doing that, it was the disease!" gets old really fast. It is human nature to be insulted and frustrated, even angry. Think of the impulsive things that a child does or says because they have not yet learned that it wrong to do so. This is the same idea, but in reverse. They used to know but that knowledge has been stolen from them by the disease.
It is important for caregivers, loved ones and anyone else involved in the life of someone with FTD to try to stop before reacting. The one with FTD does not have filters, but the ones affected do. Take a deep breath and count to ten before you react. Remind yourself that it IS the disease. Would the person they were before the disease have done/said that? Reacting in anger and frustration is not going calm the issue, it will make it worse for both of you.
On the other hand, if you do react with anger, frustration or any other way that escalates the situation, don't beat yourself up. Some days, it all adds up and takes its toll or even one event is too much to deal with. Last time I checked, all caregivers were humans too. Just like the one with FTD, the caregivers have limits to what they can deal with at any particular time. I am not going to go into things like the importance of respite care in this blog. The needs of the caregivers is a huge subject on its own that will have to wait until another blog entry.
This blog came about after a couple things happened to me today. Someone was telling me how I was saying the wrong things and not properly thinking about things before I said them. Duh! Why didn't I think of that? Another was questioning why I reacted to something the way I did. The totally honest answer of "I don't know" was apparently unacceptable. The scary part is that these same people claim to others that they FTD. To them, I would like to say that just because you know someone with FTD, have read a few articles or even live with someone who has the disease, it does not mean you understand what we are going through. Your life experiences are interesting and I like to hear them but they just don't apply. I truly appreciate your effort to understand but, please, do not try to tell me, after the fact, what I should do or how I should react to things. There is no way for you to give me back my filters. I wish you could.
Sunday, August 6, 2017
How My FTD Brain Fails Me
It's not been a good week for me, at least FTD-wise. It is common for FTD symptoms to worsen. Sometimes the change happens quickly, sometimes slowly. My speech difficulties seem to occur in spurts. It will plateau, then noticeably worsen then level off again for a while, sometimes even for weeks or a couple months. A week or so ago, it definitely took a step down. I have been stuttering and have been unable to come up with words much more severely than it had been. I eventually get my thoughts out as long as the person I am talking to has enough patience to listen.
Also, this week, I kept experiencing pain in my right hip. The pain was not severe, but it reminded me every so often that it was not happy. I could not remember anything happening that could have caused the pain, nothing at all. Then this morning, I went outside to talk to my friend who had brought some mulch over to spread out for me. The longer I tried to talk to him, my speech got worse and I got more and more angry at FTD. It wasn't long until I stomped my right foot in sheer frustration. This cycle of speech problems and stomping my foot continued the longer we talked. If there ever was an ah-ha moment, this was it. I'll bet my friend even saw the light bulb click on. This was why my hip was hurting. Every time I got frustrated with my worsening speech, I was spreading the irritation straight to the hip! All this without knowing I was doing it.
Even though I am now aware I am doing it, it is not going stop me from stomping that foot. FTD does not allow me to reprogram my brain. In addition, the frustration seems to need to find a way out.
Another incident happened earlier this week. I had a huge meltdown. It totally ruined the day for both my husband/care giver and me. To be honest, I do not even remember at all what triggered it. My husband was there so it was probably me getting frustrated because he was ignoring what I was saying or I felt he was just not listening to me. I must break for a second to tell you something that I find funny.
After several years of many people haranguing him, my husband actually got hearing aids. Some of the amusing things about it is how he keeps turning down the television, complaining that my sneakers are squeaking on the kitchen floor or asking things like "Are the birds always singing so loudly?" Now, I finally have the answer to the claim that men have "selective hearing." He now hears everything... except me talking.
Now, back to my meltdown. My speech problems always escalate when I have become upset or frustrated. Sometimes my balance and walking worsens as well. This day, however, the effects were much more pronounced than usual. I could barely get any words out. I would get stuck on the first syllable of a word for minutes at a time or just was unable to come up with any of the words I needed. That isn't so unusual, but it was much worse than it usually is. In addition, my head kept making small movements, almost as if I were shaking my head "no." Then, my right leg started twitching. The closest I can describe how it felt was that it seems as if electrical pulses were zapping down my leg every minute or two. It frightened me and frightened my husband perhaps even more. It was probably a good thing that I had seated myself before it escalated to the point my leg was involved. Once I calmed down, the symptoms eased. The speech difficulties stayed, but the twitching stopped. I was totally exhausted when the twitching had stopped.
I sure hope that these symptoms do not start becoming regular for me, progressing just like my speech and movement issues have progressed over the past few years. It would be easy to shove the incident aside since it happened when I was having a meltdown. The problem with this is that the meltdowns are caused by FTD. Things, that used to just irritate me a bit, but I was able to accept or ignore them, and they would not become huge issues.
My FTD brain is so occupied with trying to just deal with daily life that there seems to be no leeway on dealing with anything that involves emotions. If we go back to some of the earliest symptoms of FTD, we get "changes in behavior," "showing poor judgement," "no consideration of the feelings of others," and the biggie "no filter between thoughts and speech or impulse control resulting in offending others." Yep, these symptoms were all involved that day. I said whatever thoughts came to me, disregarding whether the words would hurt my husband or not. The more he tried to not react adversely came across in my brain as though he did not care or was not interested in what I had to say. The anger and frustrations just kept feeding off each other, leading to the severe symptoms.
Could I have prevented this from escalating the way it did. The answer is a big, fat, NO! I was not capable of stopping it. I kind of remember realizing I was over reacting but even that would not stop what was happening or even slow it down. Did my husband respond in the best way possible? Probably not. He just kept telling me to calm down and to stop. It might have been better if, along with telling me to calm down, tell me that we can work it out or talk it out together and that he is there for me. Maybe, maybe not. On the other hand, if I had someone screaming and acting with so much anger, I would not known how to deal with it either.
I wish I could say that this incident was something that does not happen often. I wish I could say that it will never happen again. I wish I could say that I will work on preventing it from happening. With FTD, it's impossible for any of these statements to be true. The dead and dying brain cells can't do it. The cells cannot repair themselves or regrow. The effects of these dying cells depend on which part of the brain is involved.
The frontal region of the brain is what controls social behaviors and emotional behaviors. It is the part of the brain that tells us it is not appropriate to talk back to the pastor during his sermon. Yes, I did do that. It is also the part of the brain that tells you not to stick your finger in a pot of nearly boiling water to determine if it was hot yet. Yep, I did that one too. When the frontal lobe is damaged, we tend to focus on unimportant things or details and not recognize the important ones. The frontal lobes also affect our language skills, including finding the right words. They also affect motor function.
Obviously, the frontal region of the brain is the "fronto" part of Frontotemporal Degeneration. It's not difficult at all to determine that it was the front of brain that failed me that day.
Also, this week, I kept experiencing pain in my right hip. The pain was not severe, but it reminded me every so often that it was not happy. I could not remember anything happening that could have caused the pain, nothing at all. Then this morning, I went outside to talk to my friend who had brought some mulch over to spread out for me. The longer I tried to talk to him, my speech got worse and I got more and more angry at FTD. It wasn't long until I stomped my right foot in sheer frustration. This cycle of speech problems and stomping my foot continued the longer we talked. If there ever was an ah-ha moment, this was it. I'll bet my friend even saw the light bulb click on. This was why my hip was hurting. Every time I got frustrated with my worsening speech, I was spreading the irritation straight to the hip! All this without knowing I was doing it.
Even though I am now aware I am doing it, it is not going stop me from stomping that foot. FTD does not allow me to reprogram my brain. In addition, the frustration seems to need to find a way out.
Another incident happened earlier this week. I had a huge meltdown. It totally ruined the day for both my husband/care giver and me. To be honest, I do not even remember at all what triggered it. My husband was there so it was probably me getting frustrated because he was ignoring what I was saying or I felt he was just not listening to me. I must break for a second to tell you something that I find funny.
After several years of many people haranguing him, my husband actually got hearing aids. Some of the amusing things about it is how he keeps turning down the television, complaining that my sneakers are squeaking on the kitchen floor or asking things like "Are the birds always singing so loudly?" Now, I finally have the answer to the claim that men have "selective hearing." He now hears everything... except me talking.
Now, back to my meltdown. My speech problems always escalate when I have become upset or frustrated. Sometimes my balance and walking worsens as well. This day, however, the effects were much more pronounced than usual. I could barely get any words out. I would get stuck on the first syllable of a word for minutes at a time or just was unable to come up with any of the words I needed. That isn't so unusual, but it was much worse than it usually is. In addition, my head kept making small movements, almost as if I were shaking my head "no." Then, my right leg started twitching. The closest I can describe how it felt was that it seems as if electrical pulses were zapping down my leg every minute or two. It frightened me and frightened my husband perhaps even more. It was probably a good thing that I had seated myself before it escalated to the point my leg was involved. Once I calmed down, the symptoms eased. The speech difficulties stayed, but the twitching stopped. I was totally exhausted when the twitching had stopped.
I sure hope that these symptoms do not start becoming regular for me, progressing just like my speech and movement issues have progressed over the past few years. It would be easy to shove the incident aside since it happened when I was having a meltdown. The problem with this is that the meltdowns are caused by FTD. Things, that used to just irritate me a bit, but I was able to accept or ignore them, and they would not become huge issues.
My FTD brain is so occupied with trying to just deal with daily life that there seems to be no leeway on dealing with anything that involves emotions. If we go back to some of the earliest symptoms of FTD, we get "changes in behavior," "showing poor judgement," "no consideration of the feelings of others," and the biggie "no filter between thoughts and speech or impulse control resulting in offending others." Yep, these symptoms were all involved that day. I said whatever thoughts came to me, disregarding whether the words would hurt my husband or not. The more he tried to not react adversely came across in my brain as though he did not care or was not interested in what I had to say. The anger and frustrations just kept feeding off each other, leading to the severe symptoms.
Could I have prevented this from escalating the way it did. The answer is a big, fat, NO! I was not capable of stopping it. I kind of remember realizing I was over reacting but even that would not stop what was happening or even slow it down. Did my husband respond in the best way possible? Probably not. He just kept telling me to calm down and to stop. It might have been better if, along with telling me to calm down, tell me that we can work it out or talk it out together and that he is there for me. Maybe, maybe not. On the other hand, if I had someone screaming and acting with so much anger, I would not known how to deal with it either.
I wish I could say that this incident was something that does not happen often. I wish I could say that it will never happen again. I wish I could say that I will work on preventing it from happening. With FTD, it's impossible for any of these statements to be true. The dead and dying brain cells can't do it. The cells cannot repair themselves or regrow. The effects of these dying cells depend on which part of the brain is involved.
The frontal region of the brain is what controls social behaviors and emotional behaviors. It is the part of the brain that tells us it is not appropriate to talk back to the pastor during his sermon. Yes, I did do that. It is also the part of the brain that tells you not to stick your finger in a pot of nearly boiling water to determine if it was hot yet. Yep, I did that one too. When the frontal lobe is damaged, we tend to focus on unimportant things or details and not recognize the important ones. The frontal lobes also affect our language skills, including finding the right words. They also affect motor function.
Obviously, the frontal region of the brain is the "fronto" part of Frontotemporal Degeneration. It's not difficult at all to determine that it was the front of brain that failed me that day.
Saturday, July 29, 2017
Helpful Tips: Some New, Some Old
I learn things about FTD constantly as well as how to and how not to deal with it. Many of the things are probably already known by many others, caregivers and FTD'ers alike. I never know, though, if these are things that might help some.
One thing I have a problem with is understanding long or compound sentences. It boils down to the "one thing at a time" concept that I often preach for those with FTD. My brain can grab one idea out of a sentence or string of sentences, but then it starts spinning and can actually make me forget even that one idea that I had grasped. It is even worse when the important words are at the end. In others words, when speaking to someone with FTD, try to use short and to the point sentences. If I need more information after hearing the short and sweet message, it is better if I ask for it.
An example, "Do you remember that fudge, the one that tastes like peanut butter meltaways? We got the recipe at the craft store where we would have to go to get the ingredients. I think it was the one by the pet store. You made some of it for the bake sale at the church." By then, I am pulling my hair out, brain is spinning and I just want it to scream. Finally, the point is made... "Can you make some?" Instead, what I needed to hear was "Can you make some of that peanut butter meltaway fudge?" The first example ends up with me frustrated, angry, screaming and never making the fudge. The second one, I can answer. "Sure, it's easy, we just need to get the stuff."
I have talked about keeping it simple before, but this example seemed the perfect way to explain it. At least I hope so! I should also add that we, or at least I, cannot understand sarcasm. You answer a question with a sarcastic or snide answer, I believe that is the true answer.
Another suggestion to keep peace in the household: I have my quiet space in my room and usually end up in there by 7 or 8:00 in the evening. I need this time to de-stress if I hope to sleep that night. I need it calm and quiet. If your loved one has a space like this, try to honor it. It doesn't help me de-stress if someone pops in and asks a "quick" question that could certainly wait until the next day or a lengthy description of what is happening in the ball game. If the house isn't on fire, no one is sick or I won $5 on the lottery, please don't pop in. Now, if I win the Power Ball, you can come in, but I don't buy lottery tickets. Lottery tickets are one of those things that are not good for an FTD'er to start buying. Since handling money is often a problem, how would I know when to stop buying them? Plus, even if I had the winning ticket, I would most likely lose it before turning it in. I have a habit of putting things "where I can find them" and then no way remember where that was.
I hear many caregivers asking about eyes and why does their loved one keep their eyes closed. I'm sure I have mentioned double vision before but, as mine worsens, I realize how bad the problem is. When you see two distinct images of the same thing, it strains your eyes to try to focus. With FTD, the double vision fluctuates so corrective lenses aren't going to do the trick. If I am looking outside, I see two of everything but one of them keeps moving in and out. So, no, we probably cannot see what you think we should because "it is right there where you are looking!"
The second problem that can occur with eyes is sensitivity to light. I cannot back this up at all with medical fact, but I suspect this has something to do with the eyes not getting the message to dilate properly. Many people get relief by wearing sunglasses, even in the house. It also helps to not sit right by the window or glass door. If I want to watch the birds fade in and out from one to two images, I do it from several feet away from the window. If it is still too bright for comfort, closing the shades or curtains should help. I can remember when my mom was caring for my grandma who had FTD. Mom put her easy chair right by the window so she could look out and always had the TV on for her. When I would stop in, Gram would often ask me to turn off the lights. It never occurred to me that it was probably too much light until I experienced it myself. An interesting occurrence that affects at least me, is that when I try to read, it seems I cannot get enough light. It is almost like having cataracts again. When I try to read the newspaper, I find myself turning on more lights. For those of us who can still read, I find using my Nook or tablet is easier on my eyes than real books. I find the "night" setting best. It is a black background with white letters. I also read in a dim or dark room. Both the double vision and sensitivity to light can cause horrific headaches. They are so bad that closing our eyes is sometimes all we can do. Headache medications don't make even a dent in FTD headaches.
Totally changing the subject, Agave Nectar is one of the best things I have discovered. Those of us with FTD crave sweets and carbs something fierce. One problem with that is it can cause blood sugar issues for me and I am not even diabetic. Agave Nectar is about the consistency of honey and is made from the agave plant. Tequila is also made from agave, so it must be good stuff in my mind. Don't worry, it's not alcohol. Though it has just as many calories as sugar, it does not affect the blood sugar levels the way sugar does. Wherever I can, I use Agave Nectar instead of sugar. I use it in my coffee and tea. I also use it anything I am cooking and that needs some added sweetness. Any time a recipe calls for honey, I use it instead. I wouldn't recommend trying it for baking except as a substitute for honey.
Everyone talks about trying to get the FTD'er to help around the house with little chores where possible. I am supposed to make my bed every morning. This often resulted in total frustration when I couldn't get the sheets and blankets fixed right so the bed could look okay. We bought a puffy comforter that solved the issue. Now, if the sheets and blankets aren't pulled up straight or perfectly flat, the puffiness of the comforter covers it up and the bed looks great. Don't tell my husband but, sometimes, I only pull up the comforter without worrying about the sheet and blankets and it still looks great.
One thing that can be a challenge when caring for an FTD'er is brushing the teeth. One day last week, I accidentally swallowed some toothpaste. It really burned, especially at the soft palette at the back of the mouth. That burning sensation stayed for a couple hours. I had no idea what caused me to swallow some of the paste but it made me think of the difficulties to come. I also remember the kids' toothpaste I bought when my daughter was first learning to brush hers. It was fruity sweet, didn't burn or irritate and was nothing to worry about if swallowed. The light bulb lit up over my head that children's toothpaste with a children's soft, or adult super soft toothbrush with a small head, just might save some battles. The other thing that can work is the little foam squares on a stick that they use in hospitals and nursing homes. The foam contains something to clean the teeth, is soft and can be easily slipped in between the cheek and gums. These are available on Amazon and, I imagine, at most drug stores as well.
I am learning what to not eat because it will trigger my swallowing difficulties. I only eat canned fruit now because raw fruit is one of those triggers. For instance, peeled apples cut into small pieces is better than whole or large pieces. Applesauce is better. Some of my other triggers are french fries, potato chips, pretzels, the crust on toast and most anything on the dry side. It does help to drink liquid before eating and throughout the meal. Keeping to wetter foods helps a lot, for me at least. I cut the crust off toast and sandwiches. I cut my food into very small bites. If I put butter, cream cheese, jelly or anything similar onto crackers, I can swallow them easily but not if they are plain. When we order pizza, I get a softer crust and some toppings that aren't dry. I also often make our own pizza to solve the problem. I buy the soft flat bread from the bakery in the grocery. Contadina makes a decent pizza sauce in a squeeze bottle (I'm sure there are other brands, but that's what our store carries) or I use olive oil and a little garlic. Add on plenty of cheese, onions, fresh, peeled, tomato slices or any other soft topping I scrounge out of the fridge, and it makes a yummy pizza that I swallow with no problem. I only bake it until the cheese melts, so the crust doesn't dry out.
Several incidents of trying to juggle my "stuff" happened this week. I find it difficult, while using my cane, to juggle anything else. I have made sure my purse has long enough straps that I can put them up on my shoulder and still leave that hand for hanging on to my husband, or whomever, for additional support. Even with it that way, it still gets awkward sometimes and if you add in one more thing, it becomes too much and overwhelms me. I know I should give up carrying my purse or just use a small cross body one, but how else do a carry a bottle of water just in case, sunglasses, reading glasses and all the other necessities. Unless my husband wants to start carrying a purse, I'm not ready to give mine up.
One instance that happened this week was when I reached out to accept something that someone was handing to me. I totally forgot about my purse and it crashed to the ground. Another time, I was entering a business and two people were being very kind and holding both the front door and the airlock door. One had the right side of the door open and the other the left. For some reason, that confused me. I was trying to switch my cane from one hand to the other. I have no idea why my brain thought that to switch sides of the opened doors required me to switch hands. This is one of those mind boggling things that occur all the time with an FTD brain. By time I was through the second door, my brain was spinning and trying to figure out what was happening.
My point on this is that I need to keep things as simple as possible. I need to carry as little stuff as necessary. Usually, we work it out, but in this case it was pouring rain and my husband had dropped me at the front door since all the handicapped spaces were full. After the confusion over nothing at all, I realized how much I depend on my husband when we venture out. Not enough, though, that I would wait in the pounding rain for him to get to the door.
Life with FTD is always an adventure for those of us with the disease and all of our caregivers. This blog entry reads a little disjointed. Then again, my FTD brain is also disjointed. I hope some of these things can help you.
One thing I have a problem with is understanding long or compound sentences. It boils down to the "one thing at a time" concept that I often preach for those with FTD. My brain can grab one idea out of a sentence or string of sentences, but then it starts spinning and can actually make me forget even that one idea that I had grasped. It is even worse when the important words are at the end. In others words, when speaking to someone with FTD, try to use short and to the point sentences. If I need more information after hearing the short and sweet message, it is better if I ask for it.
An example, "Do you remember that fudge, the one that tastes like peanut butter meltaways? We got the recipe at the craft store where we would have to go to get the ingredients. I think it was the one by the pet store. You made some of it for the bake sale at the church." By then, I am pulling my hair out, brain is spinning and I just want it to scream. Finally, the point is made... "Can you make some?" Instead, what I needed to hear was "Can you make some of that peanut butter meltaway fudge?" The first example ends up with me frustrated, angry, screaming and never making the fudge. The second one, I can answer. "Sure, it's easy, we just need to get the stuff."
I have talked about keeping it simple before, but this example seemed the perfect way to explain it. At least I hope so! I should also add that we, or at least I, cannot understand sarcasm. You answer a question with a sarcastic or snide answer, I believe that is the true answer.
Another suggestion to keep peace in the household: I have my quiet space in my room and usually end up in there by 7 or 8:00 in the evening. I need this time to de-stress if I hope to sleep that night. I need it calm and quiet. If your loved one has a space like this, try to honor it. It doesn't help me de-stress if someone pops in and asks a "quick" question that could certainly wait until the next day or a lengthy description of what is happening in the ball game. If the house isn't on fire, no one is sick or I won $5 on the lottery, please don't pop in. Now, if I win the Power Ball, you can come in, but I don't buy lottery tickets. Lottery tickets are one of those things that are not good for an FTD'er to start buying. Since handling money is often a problem, how would I know when to stop buying them? Plus, even if I had the winning ticket, I would most likely lose it before turning it in. I have a habit of putting things "where I can find them" and then no way remember where that was.
I hear many caregivers asking about eyes and why does their loved one keep their eyes closed. I'm sure I have mentioned double vision before but, as mine worsens, I realize how bad the problem is. When you see two distinct images of the same thing, it strains your eyes to try to focus. With FTD, the double vision fluctuates so corrective lenses aren't going to do the trick. If I am looking outside, I see two of everything but one of them keeps moving in and out. So, no, we probably cannot see what you think we should because "it is right there where you are looking!"
The second problem that can occur with eyes is sensitivity to light. I cannot back this up at all with medical fact, but I suspect this has something to do with the eyes not getting the message to dilate properly. Many people get relief by wearing sunglasses, even in the house. It also helps to not sit right by the window or glass door. If I want to watch the birds fade in and out from one to two images, I do it from several feet away from the window. If it is still too bright for comfort, closing the shades or curtains should help. I can remember when my mom was caring for my grandma who had FTD. Mom put her easy chair right by the window so she could look out and always had the TV on for her. When I would stop in, Gram would often ask me to turn off the lights. It never occurred to me that it was probably too much light until I experienced it myself. An interesting occurrence that affects at least me, is that when I try to read, it seems I cannot get enough light. It is almost like having cataracts again. When I try to read the newspaper, I find myself turning on more lights. For those of us who can still read, I find using my Nook or tablet is easier on my eyes than real books. I find the "night" setting best. It is a black background with white letters. I also read in a dim or dark room. Both the double vision and sensitivity to light can cause horrific headaches. They are so bad that closing our eyes is sometimes all we can do. Headache medications don't make even a dent in FTD headaches.
Totally changing the subject, Agave Nectar is one of the best things I have discovered. Those of us with FTD crave sweets and carbs something fierce. One problem with that is it can cause blood sugar issues for me and I am not even diabetic. Agave Nectar is about the consistency of honey and is made from the agave plant. Tequila is also made from agave, so it must be good stuff in my mind. Don't worry, it's not alcohol. Though it has just as many calories as sugar, it does not affect the blood sugar levels the way sugar does. Wherever I can, I use Agave Nectar instead of sugar. I use it in my coffee and tea. I also use it anything I am cooking and that needs some added sweetness. Any time a recipe calls for honey, I use it instead. I wouldn't recommend trying it for baking except as a substitute for honey.
Everyone talks about trying to get the FTD'er to help around the house with little chores where possible. I am supposed to make my bed every morning. This often resulted in total frustration when I couldn't get the sheets and blankets fixed right so the bed could look okay. We bought a puffy comforter that solved the issue. Now, if the sheets and blankets aren't pulled up straight or perfectly flat, the puffiness of the comforter covers it up and the bed looks great. Don't tell my husband but, sometimes, I only pull up the comforter without worrying about the sheet and blankets and it still looks great.
One thing that can be a challenge when caring for an FTD'er is brushing the teeth. One day last week, I accidentally swallowed some toothpaste. It really burned, especially at the soft palette at the back of the mouth. That burning sensation stayed for a couple hours. I had no idea what caused me to swallow some of the paste but it made me think of the difficulties to come. I also remember the kids' toothpaste I bought when my daughter was first learning to brush hers. It was fruity sweet, didn't burn or irritate and was nothing to worry about if swallowed. The light bulb lit up over my head that children's toothpaste with a children's soft, or adult super soft toothbrush with a small head, just might save some battles. The other thing that can work is the little foam squares on a stick that they use in hospitals and nursing homes. The foam contains something to clean the teeth, is soft and can be easily slipped in between the cheek and gums. These are available on Amazon and, I imagine, at most drug stores as well.
I am learning what to not eat because it will trigger my swallowing difficulties. I only eat canned fruit now because raw fruit is one of those triggers. For instance, peeled apples cut into small pieces is better than whole or large pieces. Applesauce is better. Some of my other triggers are french fries, potato chips, pretzels, the crust on toast and most anything on the dry side. It does help to drink liquid before eating and throughout the meal. Keeping to wetter foods helps a lot, for me at least. I cut the crust off toast and sandwiches. I cut my food into very small bites. If I put butter, cream cheese, jelly or anything similar onto crackers, I can swallow them easily but not if they are plain. When we order pizza, I get a softer crust and some toppings that aren't dry. I also often make our own pizza to solve the problem. I buy the soft flat bread from the bakery in the grocery. Contadina makes a decent pizza sauce in a squeeze bottle (I'm sure there are other brands, but that's what our store carries) or I use olive oil and a little garlic. Add on plenty of cheese, onions, fresh, peeled, tomato slices or any other soft topping I scrounge out of the fridge, and it makes a yummy pizza that I swallow with no problem. I only bake it until the cheese melts, so the crust doesn't dry out.
Several incidents of trying to juggle my "stuff" happened this week. I find it difficult, while using my cane, to juggle anything else. I have made sure my purse has long enough straps that I can put them up on my shoulder and still leave that hand for hanging on to my husband, or whomever, for additional support. Even with it that way, it still gets awkward sometimes and if you add in one more thing, it becomes too much and overwhelms me. I know I should give up carrying my purse or just use a small cross body one, but how else do a carry a bottle of water just in case, sunglasses, reading glasses and all the other necessities. Unless my husband wants to start carrying a purse, I'm not ready to give mine up.
One instance that happened this week was when I reached out to accept something that someone was handing to me. I totally forgot about my purse and it crashed to the ground. Another time, I was entering a business and two people were being very kind and holding both the front door and the airlock door. One had the right side of the door open and the other the left. For some reason, that confused me. I was trying to switch my cane from one hand to the other. I have no idea why my brain thought that to switch sides of the opened doors required me to switch hands. This is one of those mind boggling things that occur all the time with an FTD brain. By time I was through the second door, my brain was spinning and trying to figure out what was happening.
My point on this is that I need to keep things as simple as possible. I need to carry as little stuff as necessary. Usually, we work it out, but in this case it was pouring rain and my husband had dropped me at the front door since all the handicapped spaces were full. After the confusion over nothing at all, I realized how much I depend on my husband when we venture out. Not enough, though, that I would wait in the pounding rain for him to get to the door.
Life with FTD is always an adventure for those of us with the disease and all of our caregivers. This blog entry reads a little disjointed. Then again, my FTD brain is also disjointed. I hope some of these things can help you.
Sunday, July 23, 2017
Trying To Work It Out
Since being diagnosed with FTD, one of my mantras is "One Thing at a Time." I have talked about it and written about it many times. My usual fallback to explain the principal is baking a cake and how it is no longer just one thing to do, it is broken down into at least a dozen things to do and it can be overwhelming. This week, it came to me that it might be easier for caregivers to understand if I take in backwards.
When the person with FTD lashes out in anger, it is often a result of too much stimulus. This can be noises, questions, lights, trying to do things, on and on. My husband was asking questions of me one day this week. They were simple questions one leading to the next. After four or five questions, I snapped and yelled something like "Figure it out yourself!" If he had just observed that I was getting stressed and/or frustrated and backed off with the next question, it would have been much better. He could wait until later, if possible, to ask more questions. Watch for frowns, squinting eyes or blank stares to see if they are confused or are no longer following what you are saying. I start waving my arms to chase away his words. You know your loved one better than anyone else and are best able to learn the signs from them.
Now, I can even insert my other favorite mantra "It's not that I won't, it's that I can't." The questions he was asking weren't very difficult ones, but as one led to another, I reached my breaking point. I did not intentionally get frustrated or yell out. It just happened. I ended up feeling upset that I had let him down. I would have liked to be able to help him by answering all the questions, but I reached my limit and could not continue. So, now, I was angry at both of us.
When things like this happen, I think if might help if the caregivers backs down. Don't argue back, just say "Okay" or "I'm sorry" and back away. Once the caregiver steps away from the situation, it is time to look back at what just happened. What caused the overload and how can it be prevented the next time.
What helps with me is, as I said, keep the point short and sweet. Don't build up to it with long sentences setting the scene. Ask the question or make the statement as short and sweet as possible. Also, try to remember that things we used to do before FTD are not necessarily things we can still do. If we don't have the answer you want the first time you ask, drop it.
It is not helpful to ask the same question over and over or by rewording it. Several times over the last two weeks, my husband has asked me to try to remember something that happened 40 years ago. He obviously could not remember so I'm not sure how he thought that I might be able to. In addition, if I could not remember the first time he asked, what was the likelihood that two days later I would be able to. I got angry around the fourth time, but my reaction was not as bad as in my previous example.
Another trap for caregivers is to keep requesting your loved one to do something. If you ask them to take out the trash or feed the cat, whatever, and they don't respond, wait a bit and calmly ask again. If they resist. Odds are that the cannot do it, even if it is one of the small chores they are usually able to do. It is not always easy for the caregiver to pick up on things throughout the day that are building up in their loved one and leaving them at the point where they just cannot seem to focus on doing anything at all. Again, they may want to (and you certainly would like them to) but they cannot. If you keep forcing the issue, it still won't get done and one or the other of you will reach your breaking point.
The worst part about reaching the point that I cannot go on and lose my patience, it leaves me worn out, usually with a headache and irritable for the rest of the day. I can't do anything like fix a simple dinner or enjoy doing anything at all. From reading comments by caregivers, it seems to be pretty much the same for them.
Now, it probably sounds like I am picking at my husband. I really am not. He takes great care of me and is always ready to jump in and help when I will allow it. When he makes mistakes with me it is that sometimes I seem like my old self for long enough that he forgets. I don't blame him one iota for that. I wish I could be my old self as well. I use so many examples that involve him because he is the one I spend the most time with. Plus, he won't get upset that I use examples with him like my friends and other family might.
We try to do what I am suggesting all caregivers to do. After the fact, when we have both backed off and settled down, we talk about what happened. We discuss how things built up to be too much and what we each could have done differently. I also try to explain what my level of frustration is and how worn out the event has left me.
The best part of these learning experiences is that we always give each other an encouraging hug afterward.
When the person with FTD lashes out in anger, it is often a result of too much stimulus. This can be noises, questions, lights, trying to do things, on and on. My husband was asking questions of me one day this week. They were simple questions one leading to the next. After four or five questions, I snapped and yelled something like "Figure it out yourself!" If he had just observed that I was getting stressed and/or frustrated and backed off with the next question, it would have been much better. He could wait until later, if possible, to ask more questions. Watch for frowns, squinting eyes or blank stares to see if they are confused or are no longer following what you are saying. I start waving my arms to chase away his words. You know your loved one better than anyone else and are best able to learn the signs from them.
Now, I can even insert my other favorite mantra "It's not that I won't, it's that I can't." The questions he was asking weren't very difficult ones, but as one led to another, I reached my breaking point. I did not intentionally get frustrated or yell out. It just happened. I ended up feeling upset that I had let him down. I would have liked to be able to help him by answering all the questions, but I reached my limit and could not continue. So, now, I was angry at both of us.
When things like this happen, I think if might help if the caregivers backs down. Don't argue back, just say "Okay" or "I'm sorry" and back away. Once the caregiver steps away from the situation, it is time to look back at what just happened. What caused the overload and how can it be prevented the next time.
What helps with me is, as I said, keep the point short and sweet. Don't build up to it with long sentences setting the scene. Ask the question or make the statement as short and sweet as possible. Also, try to remember that things we used to do before FTD are not necessarily things we can still do. If we don't have the answer you want the first time you ask, drop it.
It is not helpful to ask the same question over and over or by rewording it. Several times over the last two weeks, my husband has asked me to try to remember something that happened 40 years ago. He obviously could not remember so I'm not sure how he thought that I might be able to. In addition, if I could not remember the first time he asked, what was the likelihood that two days later I would be able to. I got angry around the fourth time, but my reaction was not as bad as in my previous example.
Another trap for caregivers is to keep requesting your loved one to do something. If you ask them to take out the trash or feed the cat, whatever, and they don't respond, wait a bit and calmly ask again. If they resist. Odds are that the cannot do it, even if it is one of the small chores they are usually able to do. It is not always easy for the caregiver to pick up on things throughout the day that are building up in their loved one and leaving them at the point where they just cannot seem to focus on doing anything at all. Again, they may want to (and you certainly would like them to) but they cannot. If you keep forcing the issue, it still won't get done and one or the other of you will reach your breaking point.
The worst part about reaching the point that I cannot go on and lose my patience, it leaves me worn out, usually with a headache and irritable for the rest of the day. I can't do anything like fix a simple dinner or enjoy doing anything at all. From reading comments by caregivers, it seems to be pretty much the same for them.
Now, it probably sounds like I am picking at my husband. I really am not. He takes great care of me and is always ready to jump in and help when I will allow it. When he makes mistakes with me it is that sometimes I seem like my old self for long enough that he forgets. I don't blame him one iota for that. I wish I could be my old self as well. I use so many examples that involve him because he is the one I spend the most time with. Plus, he won't get upset that I use examples with him like my friends and other family might.
We try to do what I am suggesting all caregivers to do. After the fact, when we have both backed off and settled down, we talk about what happened. We discuss how things built up to be too much and what we each could have done differently. I also try to explain what my level of frustration is and how worn out the event has left me.
The best part of these learning experiences is that we always give each other an encouraging hug afterward.
Saturday, July 15, 2017
When FTD Takes Over (UPDATED 7/18)
I have mentioned, many times, in previous blogs about how so many things can become way to complicated for someone with FTD. This past week has been a perfect example of this. My brain is not working well after a week of frustration, so I hope I can relay this so it makes sense.
We have used DirecTV for about 10 years and we were pretty happy with it. Then they merged with AT&T. I could no longer call and speak to someone in the U.S. This was never a problem pre-FTD. I was good at understanding dialects and accents, but not anymore. Also, even if someone knows how to speak English, they don't always understand the proper meaning of some of our words. So, for the last five years or so, I would request to speak to someone in the U.S. if it was difficult to understand them. Since the merger, they could no longer do that. They did transfer me to three different people at their location until I got one I could understand. Oh, and this was after the first one hung up on me.
The language issue was livable. It was frustrating, but I got through it. The worst part was that now that I was getting a separate bill from Direct instead of it being on my phone bill, I realized that a discount that I was promised a few months prior was not reflected. $45. a month was worth complaining about. They kept saying that "he should not have done that." Okay. But he did do that. They also kept saying there was a record that I called, but not of what was said or done. That was a huge clue that something was wrong. Even with FTD I figured out that how could they be saying he should not have done that, if they were not seeing a record of what he had done. Plus, I have always been amazed at the notes they enter with every call.
The entire experience was one frustration after another. I must admit here, that since I have had FTD, I get angry more readily. I was actually surprisingly calm on the phone with them. However, I was angry enough that I contacted Dish Network and signed up for service with them. I even spoke with someone in the U.S.! We worked out a good package for our needs and we will be saving nearly $50 a month. Pretty darned close to the $45 discount that Direct was refusing to acknowledge. I asked my husband if he was in agreement and he had no problem with it.
Two days later they came to install Dish. Oh, first I should say that I called that morning to cancel DirecTV and they offered me even a better deal to stay with them, but not enough to change my mind. The interesting thing, remember that $45 discount I was promised? Miracles of all miracles, he could see the record that I was promised that and insisted it was handled incorrectly and we should have received the price reduction all along. Duh! Anyone who knows me knows I am just a tad stubborn (read that as extremely). I still discontinued Direct.
That afternoon, the install went really well. They guys were really nice. The picture quality was amazingly better. They gave me a very quick explanation about the remote that went totally over my head. I was quite confused but was reassured that I could use the instruction card for the remote and that there was channel somewhere that would help. Believe me, neither one helped. It's been three days and I still have trouble even watching anything.
I need a remote where I can push the Record button if I want to record and the Delete button to delete something. Certainly need a single button to watch a show I have recorded. No, that takes five clicks of different buttons. To delete a recording, it takes three. To record takes at least three.
The stress of having two guys there working in three different rooms plus the garage and outside was enough. I was frazzled beyond belief. There were questions about where to put things, where they could access connections and more. It turned out that their dish had to be moved 12 feet away from the old one. There were boxes of old equipment, new equipment and a pile of instruction books. I had to decide where they should put all of the equipment. They needed a short extension cord. We could not find our box of extension cords. We ended up taking a 2-foot cord off something in the basement until we could find them. When they were done, they gave me a quick rundown of using the remote. They realized I wasn't comprehending so they assured me all the instructions were in the remote guide. Note to self: just because there are instructions, it doesn't mean you can understand them.
In my already frazzled state, I tried to operate the system. I kept trying and trying. I know, I should have waited until the next day when I wasn't so exhausted and frazzled. But, come on now, the Pirates were playing. I had to find them and figure out how to record the game so I could watch it later.
By time I gave up, it was nearly 9:00. We had not had dinner. Come to think of it, I don't think I had any lunch either. I could not talk sensibly. I was stuttering and struggling at the beginning of every word. I was skipping words and struggling to find the right ones. My husband kept trying to help me, but that made it worse. A friend called and I explained that I could not talk and would talk the next day. She wanted to discuss our lunch plans for the next day. I could not find or get out the right words that, no, I cannot talk... literally. I finally said "Call tomorrow." It was extremely frustrating for me.
My husband offered to go pick us up something to eat but I could not think of anything. He kept trying to suggest that I go with him but finally backed off that idea when I yelled "No, cannot." Not sure how forceful it comes out when it sounds like "N-N-N-N-N-N-No, ca-ca-ca-ca-ca-cannot." I am not a big fan of fast food, but I finally got out "Big Mac, you go."
People get new TV equipment installed every day. Five years ago, it would have been a drop in the bucket of my day. Instead, I was so frustrated, embarrassed, exhausted and broken that I was done in. I admitted defeat. I knew I should take a couple days and do nothing to get recharged, but felt I must go to lunch with my friend. She had gone through an upsetting event that week and I knew she needed to spend some time with someone who loves her. I enjoyed the time with her, but just going out to lunch and talking wore me out very quickly.
Today, two days after the install, I am still struggling for words, still cannot figure out the remote and am totally weary. Tomorrow and maybe the next day, I will do nothing so I can try to recharge. Well, unless something comes up.
I contacted Dish Network to see if they had a different remote that was easier. Of course not, that would be too easy. So now, I think all the way back to being upset over the bill and realize that I should not have let that anger allow me to make a questionable decision to switch. Now I wonder if I should contact Dish Network to see how much it would cost us to get out of the contract or if they would be kind enough to let us out of it because I can't use it. I don't have much hope on that last one.
I did, though, send an email to them to see if they can provide me with straight forward step by step instructions on using the remote to accomplish the functions I need. That might do the trick. Oh, and I haven't even mentioned needing to learn all new channel numbers. Ei-Yi-Yi, thanks FTD!
UPDATE: Wow! I talked to Dish on Monday. They sent me to the office of the President. I spoke with a young man there who spent at least 2 hours on the phone with me. By that morning, I was so stressed I could barely speak and was stuttering all over the place. He was so patient and actually listened. He said he would let me out of the contract if necessary, but could we talk through it and see if he could come up with an answer that would work for me. Long story short, the local technician brought me out an old style of remote that is so much easier, more like what I was used to. One button for records, etc. The young man called me yesterday evening to check up with how it was going and promised to call me again in a few days. Now, that is the way service is supposed to be!!!
We have used DirecTV for about 10 years and we were pretty happy with it. Then they merged with AT&T. I could no longer call and speak to someone in the U.S. This was never a problem pre-FTD. I was good at understanding dialects and accents, but not anymore. Also, even if someone knows how to speak English, they don't always understand the proper meaning of some of our words. So, for the last five years or so, I would request to speak to someone in the U.S. if it was difficult to understand them. Since the merger, they could no longer do that. They did transfer me to three different people at their location until I got one I could understand. Oh, and this was after the first one hung up on me.
The language issue was livable. It was frustrating, but I got through it. The worst part was that now that I was getting a separate bill from Direct instead of it being on my phone bill, I realized that a discount that I was promised a few months prior was not reflected. $45. a month was worth complaining about. They kept saying that "he should not have done that." Okay. But he did do that. They also kept saying there was a record that I called, but not of what was said or done. That was a huge clue that something was wrong. Even with FTD I figured out that how could they be saying he should not have done that, if they were not seeing a record of what he had done. Plus, I have always been amazed at the notes they enter with every call.
The entire experience was one frustration after another. I must admit here, that since I have had FTD, I get angry more readily. I was actually surprisingly calm on the phone with them. However, I was angry enough that I contacted Dish Network and signed up for service with them. I even spoke with someone in the U.S.! We worked out a good package for our needs and we will be saving nearly $50 a month. Pretty darned close to the $45 discount that Direct was refusing to acknowledge. I asked my husband if he was in agreement and he had no problem with it.
Two days later they came to install Dish. Oh, first I should say that I called that morning to cancel DirecTV and they offered me even a better deal to stay with them, but not enough to change my mind. The interesting thing, remember that $45 discount I was promised? Miracles of all miracles, he could see the record that I was promised that and insisted it was handled incorrectly and we should have received the price reduction all along. Duh! Anyone who knows me knows I am just a tad stubborn (read that as extremely). I still discontinued Direct.
That afternoon, the install went really well. They guys were really nice. The picture quality was amazingly better. They gave me a very quick explanation about the remote that went totally over my head. I was quite confused but was reassured that I could use the instruction card for the remote and that there was channel somewhere that would help. Believe me, neither one helped. It's been three days and I still have trouble even watching anything.
I need a remote where I can push the Record button if I want to record and the Delete button to delete something. Certainly need a single button to watch a show I have recorded. No, that takes five clicks of different buttons. To delete a recording, it takes three. To record takes at least three.
The stress of having two guys there working in three different rooms plus the garage and outside was enough. I was frazzled beyond belief. There were questions about where to put things, where they could access connections and more. It turned out that their dish had to be moved 12 feet away from the old one. There were boxes of old equipment, new equipment and a pile of instruction books. I had to decide where they should put all of the equipment. They needed a short extension cord. We could not find our box of extension cords. We ended up taking a 2-foot cord off something in the basement until we could find them. When they were done, they gave me a quick rundown of using the remote. They realized I wasn't comprehending so they assured me all the instructions were in the remote guide. Note to self: just because there are instructions, it doesn't mean you can understand them.
In my already frazzled state, I tried to operate the system. I kept trying and trying. I know, I should have waited until the next day when I wasn't so exhausted and frazzled. But, come on now, the Pirates were playing. I had to find them and figure out how to record the game so I could watch it later.
By time I gave up, it was nearly 9:00. We had not had dinner. Come to think of it, I don't think I had any lunch either. I could not talk sensibly. I was stuttering and struggling at the beginning of every word. I was skipping words and struggling to find the right ones. My husband kept trying to help me, but that made it worse. A friend called and I explained that I could not talk and would talk the next day. She wanted to discuss our lunch plans for the next day. I could not find or get out the right words that, no, I cannot talk... literally. I finally said "Call tomorrow." It was extremely frustrating for me.
My husband offered to go pick us up something to eat but I could not think of anything. He kept trying to suggest that I go with him but finally backed off that idea when I yelled "No, cannot." Not sure how forceful it comes out when it sounds like "N-N-N-N-N-N-No, ca-ca-ca-ca-ca-cannot." I am not a big fan of fast food, but I finally got out "Big Mac, you go."
People get new TV equipment installed every day. Five years ago, it would have been a drop in the bucket of my day. Instead, I was so frustrated, embarrassed, exhausted and broken that I was done in. I admitted defeat. I knew I should take a couple days and do nothing to get recharged, but felt I must go to lunch with my friend. She had gone through an upsetting event that week and I knew she needed to spend some time with someone who loves her. I enjoyed the time with her, but just going out to lunch and talking wore me out very quickly.
Today, two days after the install, I am still struggling for words, still cannot figure out the remote and am totally weary. Tomorrow and maybe the next day, I will do nothing so I can try to recharge. Well, unless something comes up.
I contacted Dish Network to see if they had a different remote that was easier. Of course not, that would be too easy. So now, I think all the way back to being upset over the bill and realize that I should not have let that anger allow me to make a questionable decision to switch. Now I wonder if I should contact Dish Network to see how much it would cost us to get out of the contract or if they would be kind enough to let us out of it because I can't use it. I don't have much hope on that last one.
I did, though, send an email to them to see if they can provide me with straight forward step by step instructions on using the remote to accomplish the functions I need. That might do the trick. Oh, and I haven't even mentioned needing to learn all new channel numbers. Ei-Yi-Yi, thanks FTD!
UPDATE: Wow! I talked to Dish on Monday. They sent me to the office of the President. I spoke with a young man there who spent at least 2 hours on the phone with me. By that morning, I was so stressed I could barely speak and was stuttering all over the place. He was so patient and actually listened. He said he would let me out of the contract if necessary, but could we talk through it and see if he could come up with an answer that would work for me. Long story short, the local technician brought me out an old style of remote that is so much easier, more like what I was used to. One button for records, etc. The young man called me yesterday evening to check up with how it was going and promised to call me again in a few days. Now, that is the way service is supposed to be!!!
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