It is about time that I write another blog entry dedicated to the caregivers. The role of caregiver or care partner is one of the most difficult jobs there is. You need to have the utmost patience, a mind reading ability, the muscles of a body builder and the ability to go without sleep. It is often a thankless job as well. I have extreme admiration for most caregivers. I will not address the caregivers that I find do not care or are totally lacking because their numbers are not nearly as large as the good ones.
I would like to address several issues. Some are questions that I am often asked by caregivers and some are just things that I truly wish could be handled differently.
One of my pet peeves and a habit that many caregivers need to break is the use of the words "won't", "insists on doing", "refuses to do" and any variation on them. It can be something as extreme as "s/he won't swallow her food, just hoards it in her mouth." It is not that s/he won't swallow, it is that s/he cannot swallow. It isn't always something as extreme as that example. It can be something like "s/he refuses to brush his teeth. It is most likely that he cannot brush his teeth because he does not remember that he should or how to do it. Some caregivers will put notes on the bathroom mirror to remind their loved one to brush their teeth. That is great in concept and probably makes a difference in the early stages. Unfortunately, eventually, they will not understand why the note is there, what it says or how they are supposed to do that anyway.
The FTD brain works much differently than a healthy brain. It reaches the point that "brush your teeth" is too overwhelming. It can only handle, "find your toothbrush, put a small dab of toothpaste on your toothbrush, wet the toothbrush, etc." It is not only overwhelming, but it can be extremely frustrating as well. When the FTD brain gets frustrated, lashing out often follows. It can be yelling, throwing the toothbrush away or just refusing to do anything. It is not that they don't want to brush their teeth because they probably feel a little furry, they just can't. The same principals apply to trying to get them to bathe or shower, make their bed or just about any activity you want to encourage them to do. Sometimes, it might help if you stand and brush your teeth at the same time so they can mimic what you are doing. I hate it when someone compares taking care of someone with FTD to caring for a child, but I am going to. It does help to remember how you would teach a child to do whatever it is you are wanting them to do. Please, though, do not talk down to the FTD'er or treat them like a child!
I remember, way back in my high school days, an assignment given to us by my favorite English teacher. She would have us write a description of common items and to describe it as though someone came from outerspace and had absolutely no clue about what it is. The one I remember being the most difficult was "water." I would often think about that when I was acting as a caregiver for the family members who dealt with FTD before I did.
So often, caregivers do not totally understand that too many things going on quickly become overwhelming and prevent the brain to do much of anything. I call it "going into the spin cycle" because, to me, it feels like my brain is spinning but can't find a place to stop where anything makes sense anymore. Music, pets, children, television, lawn mowers, anything that makes noise or anything that draws the eyes away from what they are trying to focus on are all things that a normal brain takes for granted and just blocks out. Temperatures can do it too, like if they are sitting near the air flow from the air conditioner or heat vent. The FTD brain cannot block the distractions out. I know of one caregiver who would put her mother in a chair in front of the television and leave her there most of the day. She truly thought that entertaining her mother with the television was a good thing that she was doing. She would also open a window next to her mothers so she could "get some fresh air." After a couple hours, her mother would become very agitated and start yelling. She didn't know how to explain that the television was overwhelming her and she could not handle it. It was exacerbated by the noises and commotion coming in through the window.
Caregivers often complain because their loved one acts inappropriately at restaurants or in other social situations. They may even accuse their loved one of trying to get attention. Assuming that the loved one is not taken to restaurants several times a week, the odds are not very good that they will remember how to act in a restaurant. It is a strange place, with a lot of strangers around, perhaps music playing in the background and other people talking. Add in having to make a choice from the menu and having to talk to strangers. I don't say that you shouldn't go to restaurants. My husband and I go out at least once a week. We do not, though, go to "fancy" restaurants anymore where I might feel embarrassed. Yesterday, I was at a restaurant with three friends. I was on the far side of a booth, so the waitress had handed me a bowl of soup. I joined in to the conversation and totally forgot I was holding the soup. It ended up splashed all over my clean white shirt. Of course it was tomato based so it showed up quite well. We were in a family-style restaurant and it was no big deal. The waitress grabbed a stack of napkins and offered to help. The three friends with me all know that I have FTD and care enough to have learned enough about it to realize that it wasn't a "stupid" thing that I did. It was just one of those times that boils down to the "one thing at a time" concept. I should have set down the soup before trying to talk to someone, but my brain was not going to realize that. It really helps if the caregiver pays attention to the one with FTD. If that had happened to me in a fine dining restaurant, I would have been mortified. If I had been out with my husband, he would probably have helped me set down the bowl as soon as I had accepted it from the waitress.
Another complaint that crops up a lot is communication difficulties. I am not qualified to talk about the FTD'ers who have aphasia and have severe difficulties speaking because I have not reached that point and the family members I cared for prior to my diagnosis did not have it either. I do have trouble speaking, though, and it gets much worse when I am stressed. I can not get words out and it sounds like I am stuttering and I will leave out words. Instead of saying "close the door for me" it will come out as "cl, cl, cl, cl, close d, d, d, d, door." I also forget words and it can take me a while to remember the word or find one to substitute. When someone tries to fill in the words for me, it does not help. It actually makes it worse because I become more frustrated. Odds are that the other person comes up with a totally different take on what I am trying to say. It also distracts me enough that I can not focus on what I am trying to say. It is not unusual, when someone is "trying to help" that I will just quit trying. It is interesting to me that when I do that, I make a motion like I am trying to erase a blackboard, or whiteboard for those not old enough to remember blackboards. I even remember when the blackboards were actually made from slate!
I am afraid I have not provided many answers here. The bottom line is to keep it simple, break things down into steps (the one thing at a time concept) and do not expect more than your loved one can offer. Also, it is important to observe what is happening so that you may understand why they are reacting the way they are or why they are lashing out. Oh, and try to find that patience of Job.
It is also a good idea to discuss any new developments with the doctor. They may indicate something to the doctor that we would not think of. One of the biggies is UTI's. I did not understand why people on the support groups would quickly ask if they had checked their loved one for a urinary tract infection. It seemed like that was a stretch at best. Then I read something that changed my mind. It explained to me that older people and people with chronic diseases have much lower resistance to infections. The infections also have more impact on their bodies. If their body is busy fighting off an infection, especially a UTI, it is depleting their ability to work properly in other areas. It can increase just about any symptom of FTD, increase agitation adding to the stress of the disease. It can also cause just enough discomfort to distract their brain from functioning as well as it had been. The good news is that once the UTI is cleared up, they most often get back to where they were before the infection. It also helps that you can now buy urine test strips in just about any pharmacy so you may be able to avoid trips to the doctor.
Also, respite care is vital for the caregiver. You cannot do it all for very long until you become worthless to yourself, the one you are caring for and everyone else in your life. It can be difficult to ask for or to accept help. You must force yourself to do it. Ask friends to come sit with your loved one for an afternoon so you can go have a massage or just sit in the park. Ask family members to come stay with them for a weekend. Check out respite care that may be available in your area at nursing home or other places. Adult day care is often an answer as well.
This had not crossed my mind when I started this blog entry, but did just I was wrapping it up. Here is the link to a brochure I wrote, called "Coping with FTD." It contains some pretty basic and common sense tips that I have after being the caregiver for family members who had FTD and now with me having it as well. I hope it helps.
www.theaftd.org/wp-content/uploads/2016/12/CindyODell-CopingWithFTD-Dec2016.pdf
Friday, June 30, 2017
Saturday, June 24, 2017
Way Too Stubborn
FTD has a way of making our lives extremely difficult. Speech issues, mobility issues, social issues, medical issues and on and on. I don't think I need to go into details on each one since I have done that repeatedly in the past. There is one that I need to talk about and that is anger and frustration.
I get angry and frustrated because I have difficulty communicating through speech. I get angry and frustrated by not being able to walk well. I get angry and frustrated because I can no longer satisfy my incessant need for independence. I get angry and frustrated when I have to ask someone else to do just about anything for me. I guess that goes hand-in-hand with my need to be independent and to do it all my way and by myself.
A couple weeks ago, I wrote my blog entry about finally accepting that I can not do it all myself anymore. I was diagnosed back in 2010. So it took me seven years to finally admit it, not to bad for me. I have broken down and hired someone to clean my house, do the yard work and the landscaping work (trimming, weeding, mulching). Now, I admit, I am quite picky. I want everything done the way I want it and when I want it done.
The house cleaner came the first time a week and a half ago. The best way I can sum it up is that she did an adequate job. I accepted that, touched up a couple things she missed and made a note of what to explain further to her next time. To begin with, I was really proud of myself for accepting that I needed help with it and really proud that I was not critical of what she did. It helps that she is a super sweet older lady.
I have been hiring a friend for several years now to come trim all the shrubbery, kill the weeds and spread a lot of mulch. It's kind of funny, actually, that we pay him to spread a ton of mulch (not literally a ton, just seems like it) then turn around and have our yard guy do a fall clean up before winter. He comes with a really strong blower to drive all the fallen leaves into the woods. Unfortunately, he also sends the mulch right along with them. See, I can accept some things! Back to the friend, it's been a month and he has not come to do the work. In his defense, it seems to be raining five days out of seven and he works long hours at his real job. Despite that, it was really getting to me that our property was looking a little ratty.
I came up with a compromise. I had already pulled weeds and trimmed in the back of the house that I see all the time from the family room and deck. That helped sooth me for a while. Then it started bothering me how ratty the property at the end of the driveway looked to anyone driving in. So I asked the lawn guy to weed whack the hill while he was here mowing. Now, this is not a huge piece of property. We're probably talking a 10' x 12' slope and he has done this a couple times a year for the past several. My husband asked him to do it this week. The next time I went out and saw it, he had trimmed the grassy area above it and had not touched the area that was getting to be overgrown. Did he not look?
So, this morning, after a few days of getting angry and tied up in knots every time I was in the driveway, I went on a weeding rampage. I crawled and scooted myself all over that hillside and got it to be looking presentable. God love my husband, he didn't say a word, just kept coming and emptying my weed bucket. He even took me out for an early dinner once I finished. I think he did it to keep me from going into another frenzy.
Now, after this long winded story of my stubbornness and not so much ability to accept that which I cannot do, I will get to the point. I get so frustrated and angry that it actually worsens my FTD symptoms. I had a lot of trouble walking from the car to the restaurant and through to our table. I had trouble ordering and making requests to the waitress. I know it will be a few days now until my FTD symptoms revert back to how they were, if they fully do, before my rampage.
Those of us with FTD pay a huge price for pushing ourselves to try and be like we used to be before FTD. The price is both physical, with worsening symptoms, and emotional when realizing all over again that we have limitations and can no longer do what we want.
One good thing this week... My sister is always offering to help and I am always refusing. I am supposed to be the strong one who does things for the rest of the family, at least in my mind. This week, while we went to an out of town doctor's appointment, she came and scrubbed the outside of all the gutters around the house. This was pretty much an all day task and one that we could not do. When she was finished and was packing up to go, she looked me in the eyes and said "Thank you for allowing me to help you."
I am tearing up just typing these words. It probably won't make much of a dent in my resistance to accepting her help, but "Wow," maybe I am just a tad too stubborn. Maybe if it happens another 50 times?
I get angry and frustrated because I have difficulty communicating through speech. I get angry and frustrated by not being able to walk well. I get angry and frustrated because I can no longer satisfy my incessant need for independence. I get angry and frustrated when I have to ask someone else to do just about anything for me. I guess that goes hand-in-hand with my need to be independent and to do it all my way and by myself.
A couple weeks ago, I wrote my blog entry about finally accepting that I can not do it all myself anymore. I was diagnosed back in 2010. So it took me seven years to finally admit it, not to bad for me. I have broken down and hired someone to clean my house, do the yard work and the landscaping work (trimming, weeding, mulching). Now, I admit, I am quite picky. I want everything done the way I want it and when I want it done.
The house cleaner came the first time a week and a half ago. The best way I can sum it up is that she did an adequate job. I accepted that, touched up a couple things she missed and made a note of what to explain further to her next time. To begin with, I was really proud of myself for accepting that I needed help with it and really proud that I was not critical of what she did. It helps that she is a super sweet older lady.
I have been hiring a friend for several years now to come trim all the shrubbery, kill the weeds and spread a lot of mulch. It's kind of funny, actually, that we pay him to spread a ton of mulch (not literally a ton, just seems like it) then turn around and have our yard guy do a fall clean up before winter. He comes with a really strong blower to drive all the fallen leaves into the woods. Unfortunately, he also sends the mulch right along with them. See, I can accept some things! Back to the friend, it's been a month and he has not come to do the work. In his defense, it seems to be raining five days out of seven and he works long hours at his real job. Despite that, it was really getting to me that our property was looking a little ratty.
I came up with a compromise. I had already pulled weeds and trimmed in the back of the house that I see all the time from the family room and deck. That helped sooth me for a while. Then it started bothering me how ratty the property at the end of the driveway looked to anyone driving in. So I asked the lawn guy to weed whack the hill while he was here mowing. Now, this is not a huge piece of property. We're probably talking a 10' x 12' slope and he has done this a couple times a year for the past several. My husband asked him to do it this week. The next time I went out and saw it, he had trimmed the grassy area above it and had not touched the area that was getting to be overgrown. Did he not look?
So, this morning, after a few days of getting angry and tied up in knots every time I was in the driveway, I went on a weeding rampage. I crawled and scooted myself all over that hillside and got it to be looking presentable. God love my husband, he didn't say a word, just kept coming and emptying my weed bucket. He even took me out for an early dinner once I finished. I think he did it to keep me from going into another frenzy.
Now, after this long winded story of my stubbornness and not so much ability to accept that which I cannot do, I will get to the point. I get so frustrated and angry that it actually worsens my FTD symptoms. I had a lot of trouble walking from the car to the restaurant and through to our table. I had trouble ordering and making requests to the waitress. I know it will be a few days now until my FTD symptoms revert back to how they were, if they fully do, before my rampage.
Those of us with FTD pay a huge price for pushing ourselves to try and be like we used to be before FTD. The price is both physical, with worsening symptoms, and emotional when realizing all over again that we have limitations and can no longer do what we want.
One good thing this week... My sister is always offering to help and I am always refusing. I am supposed to be the strong one who does things for the rest of the family, at least in my mind. This week, while we went to an out of town doctor's appointment, she came and scrubbed the outside of all the gutters around the house. This was pretty much an all day task and one that we could not do. When she was finished and was packing up to go, she looked me in the eyes and said "Thank you for allowing me to help you."
I am tearing up just typing these words. It probably won't make much of a dent in my resistance to accepting her help, but "Wow," maybe I am just a tad too stubborn. Maybe if it happens another 50 times?
Saturday, June 17, 2017
I Need an FTD Filter
One of the problems with FTD is that I cannot figure things out anymore. When a person without FTD wants to solve a problem, usually they seek more information to do so. For me, and others with FTD, seeking out more information may actually make things worse. The AFTD has a webinar on its site right now about the 4 different types of bvFTD (behavioral variant) they have isolated. I finally sat down to listen to it. It started out fascinating me, but after less than10 minutes, I had to stop listening. As the speaker kept presenting more and more information on the study and its results, I could feel my brain becoming overloaded. I had developed a severe headache in my left temporal area. As each new piece of information was presented, the pain worsened significantly and the new info was not being absorbed. To put it simply, my brain could not handle any additional information and was at the point that my entire brain felt scrambled. Nothing made sense at all, not just the new information.
My mantra, as I have written many times, is "One Thing At A Time." I also stress how each "one thing" must be a short simple step, not a process. Trying to assimilate this new knowledge was too much. After giving up, I thought that if perhaps it had just been broken down into small key points, I might have been able to grasp the info. I needed a filter to block out the unimportant stuff and just let me hear the important part.
This past week, something happened that, to me, seemed to parallel this thinking.
My daughter and I have been badgering my husband for at least five years to get his hearing checked. This past year, it has become significantly worse. I will repeat things several times. By the fourth or fifth time, I am practically yelling it. His response is always "You don't have to yell!" It has been horribly frustrating and it didn't make sense to me. To me, it made sense that if I said it louder, he would hear it and understand. Often, when I say something, he will pick out a word that rhymes or sounds similar to one I have said and often make up a sentence to go along with the word. While it can be amusing at times, it is almost beyond frustrating.
The good news is that this past week he finally saw an ENT doctor and had his hearing tested. Low and behold, severe hearing loss in both ears, most likely from being next to and inside of race cars for over 40 years with no hearing protection. It doesn't matter why, it only matters that it can be corrected.
The most interesting part to me is when the doctor was explaining that while volume is an issue, his biggest problem is clarity. The doctor explained how that can be corrected by hearing aids now just as volume can. It truly fascinated me how the ear, and the hearing aids, can work that way. To keep it simple, the hearing aids filter out the bad stuff and clarify the good stuff. The doctor was extremely patient with me while explaining it and didn't react like he thought I was stupid for asking the same questions repeatedly. By me needing it to be explained several times, it enabled my husband to thoroughly hear it. Obviously, I still didn't understand it very well or I could have explained it more effectively here.
The best news is that he is scheduled for a hearing aid evaluation and trial period in another 10 days. Hallelujah, there is hope!
I know that if his hearing can be clarified, it will immensely help with our ability to communicate. With FTD, frustrations quickly lead to blow ups. While I am having to repeat things over and over, I do snap at him. After three or four times, I often begin to forget what I was talking about anyway and decide it isn't important enough to continue to try to repeat it again. He does not want me to give up because he truly wants to know what I have to say. Quick path to a blow up every time.
Communication between the person with FTD and the care partner is critical. We both must know what is happening with the other and keep on top of what the other needs. When the communication is jumbled, it creates many problems. Hopefully, for us, the hearing aid will be an aid to our communications.
If only there was a filter or aid for those of us with FTD, our lives might be a lot easier. We could filter out the distractions and distracting noises that overwhelm us and filter out the information we do not need. Now, that would be awesome!
My mantra, as I have written many times, is "One Thing At A Time." I also stress how each "one thing" must be a short simple step, not a process. Trying to assimilate this new knowledge was too much. After giving up, I thought that if perhaps it had just been broken down into small key points, I might have been able to grasp the info. I needed a filter to block out the unimportant stuff and just let me hear the important part.
This past week, something happened that, to me, seemed to parallel this thinking.
My daughter and I have been badgering my husband for at least five years to get his hearing checked. This past year, it has become significantly worse. I will repeat things several times. By the fourth or fifth time, I am practically yelling it. His response is always "You don't have to yell!" It has been horribly frustrating and it didn't make sense to me. To me, it made sense that if I said it louder, he would hear it and understand. Often, when I say something, he will pick out a word that rhymes or sounds similar to one I have said and often make up a sentence to go along with the word. While it can be amusing at times, it is almost beyond frustrating.
The good news is that this past week he finally saw an ENT doctor and had his hearing tested. Low and behold, severe hearing loss in both ears, most likely from being next to and inside of race cars for over 40 years with no hearing protection. It doesn't matter why, it only matters that it can be corrected.
The most interesting part to me is when the doctor was explaining that while volume is an issue, his biggest problem is clarity. The doctor explained how that can be corrected by hearing aids now just as volume can. It truly fascinated me how the ear, and the hearing aids, can work that way. To keep it simple, the hearing aids filter out the bad stuff and clarify the good stuff. The doctor was extremely patient with me while explaining it and didn't react like he thought I was stupid for asking the same questions repeatedly. By me needing it to be explained several times, it enabled my husband to thoroughly hear it. Obviously, I still didn't understand it very well or I could have explained it more effectively here.
The best news is that he is scheduled for a hearing aid evaluation and trial period in another 10 days. Hallelujah, there is hope!
I know that if his hearing can be clarified, it will immensely help with our ability to communicate. With FTD, frustrations quickly lead to blow ups. While I am having to repeat things over and over, I do snap at him. After three or four times, I often begin to forget what I was talking about anyway and decide it isn't important enough to continue to try to repeat it again. He does not want me to give up because he truly wants to know what I have to say. Quick path to a blow up every time.
Communication between the person with FTD and the care partner is critical. We both must know what is happening with the other and keep on top of what the other needs. When the communication is jumbled, it creates many problems. Hopefully, for us, the hearing aid will be an aid to our communications.
If only there was a filter or aid for those of us with FTD, our lives might be a lot easier. We could filter out the distractions and distracting noises that overwhelm us and filter out the information we do not need. Now, that would be awesome!
Saturday, June 10, 2017
Okay, I Cannot Do It All
I have finally accepted that I cannot do it all. I have hired someone to come in and give my house a good cleaning once a month. I figure I can keep up with it in between with quick dustings. She is coming for the first time this week so now I have to work on accepting that no one else will do it the same way I do. I figure some of her ways will be not as good as mine but just as many will be better than how I do it.
This may seem like a trivial thing to be doing, but it is one of the most difficult things I have done since being diagnosed six or seven years ago. It is really tough for me to admit I need assistance. Admitting that seems to be like giving in to the disease, this disease I have been fighting tooth and nail. Even though I know I am being ridiculous, it's tough. I will have to stay out of her way, not to mention keeping my husband out of her way. I will admit, though, I already told them that no way will I make anyone clean my toilets. They found that quite funny and insisted they were used to it but I will be cleaning the toilets before she arrives just the same. I'm just not ready to take it that far.
Hopefully, taking this step will stop me from looking around and feeling helpless and worthless because I can't keep up with the house.
Next challenge is the yard. The friend who comes and trims my bushes and spreads mulch has committed to doing it, but is working long hours and has not made it yet. Every time I look out my sliding door to the deck and every time we pull into the driveway, I get extremely stressed that it hasn't been done yet. Yes, I could hire someone else, but he does it very well and very inexpensively.
I am dealing with the stress of this issue a different way. Every day for the past week, I went out and did a little trimming and weeding. It took me a full week because I can only manage an hour or so each day before my FTD body and brain give out. What I have done is trimming and weeding the area that I can see out my patio door to the deck and the area at the back of the driveway that we see when we pull in to it. I finished doing that yesterday so hopefully I can relax a little about that. I also keep up with my flower garden beside the deck so I can even go out onto the deck and relax for a while without stressing.
This leads me to another phenomenon. I am sensitive to most anything... laundry products, soaps, lotions, perfumes and on and on. Oh, and poison ivy, definitely poison ivy. So far this year I have avoided that. (Insert Knock on Wood here.) Mosquito bites have always been worse for me than most people. They stay puffed up, red and itchy for about a week. Now, as I have said before, FTD magnifies any problem or irritation for me. My brain reacts more strongly to distractions, irritants and anything that triggers a reaction in the brain. That is why I avoid crowds (meaning more than 2 or 3 people), loud noises, even action packed television shows.
I know all this, but I never thought about something as simple as mosquito bites. When I get them now, it is akin to a constant zapping of an electrical stimulation along with the itch. It is constant and my brain cannot ignore them and is in a constant agitated state. I hope this is an adequate definition of what it feels like. I have been driven several times to taking a mild sedative to calm down the nerves on my skin and in my brain. This is not something that would have occurred to me as a possibility and is new to me this year.
I accomplished something this week that really boosted my confidence in my ability to still do things. I saw a recipe online for Roasted Garlic Rosemary Artisan Bread. It had a lot of steps to the recipe but they were all simple ones. It is a no-knead bread which made it even easier. Even though it was a 24-hour process, it went very well and I got only one burn. That may be a record for the past couple years. It was also delicious. That first slice after it came out of the oven, slathered with butter, was scrumptious!
I will admit that I have not shared any with my husband. When I offered him a slice when it was fresh from the oven, he requested peanut butter and jelly on it. Did I mention it was roasted garlic/rosemary bread? So, baking that bread also offered some comic relief to the day! Oh, and please don't tell my husband I told you this part of the story. Hopefully when he reads this blog entry, he will get tired of it before the end...
This may seem like a trivial thing to be doing, but it is one of the most difficult things I have done since being diagnosed six or seven years ago. It is really tough for me to admit I need assistance. Admitting that seems to be like giving in to the disease, this disease I have been fighting tooth and nail. Even though I know I am being ridiculous, it's tough. I will have to stay out of her way, not to mention keeping my husband out of her way. I will admit, though, I already told them that no way will I make anyone clean my toilets. They found that quite funny and insisted they were used to it but I will be cleaning the toilets before she arrives just the same. I'm just not ready to take it that far.
Hopefully, taking this step will stop me from looking around and feeling helpless and worthless because I can't keep up with the house.
Next challenge is the yard. The friend who comes and trims my bushes and spreads mulch has committed to doing it, but is working long hours and has not made it yet. Every time I look out my sliding door to the deck and every time we pull into the driveway, I get extremely stressed that it hasn't been done yet. Yes, I could hire someone else, but he does it very well and very inexpensively.
I am dealing with the stress of this issue a different way. Every day for the past week, I went out and did a little trimming and weeding. It took me a full week because I can only manage an hour or so each day before my FTD body and brain give out. What I have done is trimming and weeding the area that I can see out my patio door to the deck and the area at the back of the driveway that we see when we pull in to it. I finished doing that yesterday so hopefully I can relax a little about that. I also keep up with my flower garden beside the deck so I can even go out onto the deck and relax for a while without stressing.
This leads me to another phenomenon. I am sensitive to most anything... laundry products, soaps, lotions, perfumes and on and on. Oh, and poison ivy, definitely poison ivy. So far this year I have avoided that. (Insert Knock on Wood here.) Mosquito bites have always been worse for me than most people. They stay puffed up, red and itchy for about a week. Now, as I have said before, FTD magnifies any problem or irritation for me. My brain reacts more strongly to distractions, irritants and anything that triggers a reaction in the brain. That is why I avoid crowds (meaning more than 2 or 3 people), loud noises, even action packed television shows.
I know all this, but I never thought about something as simple as mosquito bites. When I get them now, it is akin to a constant zapping of an electrical stimulation along with the itch. It is constant and my brain cannot ignore them and is in a constant agitated state. I hope this is an adequate definition of what it feels like. I have been driven several times to taking a mild sedative to calm down the nerves on my skin and in my brain. This is not something that would have occurred to me as a possibility and is new to me this year.
I accomplished something this week that really boosted my confidence in my ability to still do things. I saw a recipe online for Roasted Garlic Rosemary Artisan Bread. It had a lot of steps to the recipe but they were all simple ones. It is a no-knead bread which made it even easier. Even though it was a 24-hour process, it went very well and I got only one burn. That may be a record for the past couple years. It was also delicious. That first slice after it came out of the oven, slathered with butter, was scrumptious!
I will admit that I have not shared any with my husband. When I offered him a slice when it was fresh from the oven, he requested peanut butter and jelly on it. Did I mention it was roasted garlic/rosemary bread? So, baking that bread also offered some comic relief to the day! Oh, and please don't tell my husband I told you this part of the story. Hopefully when he reads this blog entry, he will get tired of it before the end...
Sunday, June 4, 2017
Catastrophic Reactions
Today, a friend posted something from ThePurpleSherpa.org which is an excellent resource for caregivers. I am often encouraged by their website because they often include descriptions of why we with FTD react the way we do. It is heartening to know that people do understand what we are dealing with and why we are the way we are.
What she posted today was "Catastrophic reactions are emotional reactions or outbursts that are out of proportion with the stimulus. They are common among people who have dementia and are usually a sign that the person is overwhelmed, frightened, unable to cope with a change. To avoid them, speak calmly, avoid giving too many choices and identify what triggers your loved one."
They get it. They really, really get it! This is something I repeatedly try to explain to my caregiving husband, my family and friends. I wish I could say that I never have reactions like this, but they are almost a daily occurrence. The most frequent cause for me is the one at a time principle that I am often preaching. If I am doing most anything at all, when you add something onto it, I go into overload. I will not respond properly to questions or understand what is being said. This has been getting progressively worse along with the disease itself. If I am trying to read, listening to music or most any thing that seems innocuous to observers, it is taking all of my concentration. If you break it down, not only am I doing the task I mention, but often also thinking about things. My reduced brain capacity is totally occupied because that is what it takes to do what I am doing. Trying to ask even a simple question takes the risk of me exploding.
As this quote says, it is because it is overwhelming, plain and simple. It can cause me to become frustrated or angry (at the world, usually not at the person asking). Part of the reason is that I know that I should be able to deal with it and cannot. Most often the frustration and anger is at myself and at the disease. It is important for everyone around me to know that when I do explode, it is not necessarily directed at them. It is just that the one more little thing being presented to me is the proverbial straw that broke the camel's back. While the one interrupting me understands this in theory, it is difficult to remain calm when I am yelling, slamming things or worse.
It was a such coincidence that my friend posted this today because it is related to what I was going to write about today. I was planning on using this past week as a perfect example of me not being able to deal with more than one thing.
Three weeks ago, I had a medical test performed on me. That was a stress for that day, but the next 10 days waiting for the results were not because I knew it was a "just in case" test that was performed plus there was a very valid reason for the results taking so long. When I finally got the call with the results is when it started getting stressful. They wanted another test because something had shown up on the first go around. This was a little more than a week ago. They got me scheduled for the second test just two days after that call. I still wasn't concerned and was not feeling anxious except for the disruption to my schedule by the unexpected medical visits. Any disruption in routine can be frustrating.
Unfortunately, that second test was inconclusive and I was told the next step was a small surgical procedure. This particular testing is only done one day out of every two weeks, but they had room for me in the testing day coming up in five days. On that day, I was home within six hours of the time I reported to the hospital. It was just stressful enough that the rest of that day plus the following day, I felt confused and had the feeling that something was wrong. Fortunately, my husband did understand that all the times I blew up at him was me being overwhelmed. We have made an effort since then to not add anything to my schedule and not tried to add any activities here at home.
We still have two days to wait for the results so we will continue this relaxed schedule. My sister stepped up to the bat and took me in for the procedure because my husband was unable to do so. My wonderful friend also offered to take me to the appointment. It is awesome to have people to rely on. My sister also brought us a lot of food that we have supplemented with carry out food that my husband has gone out for so I was able to follow the 3 days of restrictions. Finally, today, I am cooking, but it is one of our favorite and easiest to prepare meals and one that is conducive to us doing it together. My husband has been perfectly following the advice given by ThePurpleSherpa.org even before I saw it. He has tried to keep our routine a little more relaxed than usual and has been understanding about the extra stress this has caused me.
It was such a coincidence that I saw this post shortly before I was going to write this. It made it a little long but, hopefully, made both the helpful advice and my actual events easier to understand. To the caregivers out there, please take this advice to heart. It is a necessary thing to understand if you want any calmness in your lives. It is also necessary for my husband and I to continue remembering as we go through the next few days.
What she posted today was "Catastrophic reactions are emotional reactions or outbursts that are out of proportion with the stimulus. They are common among people who have dementia and are usually a sign that the person is overwhelmed, frightened, unable to cope with a change. To avoid them, speak calmly, avoid giving too many choices and identify what triggers your loved one."
They get it. They really, really get it! This is something I repeatedly try to explain to my caregiving husband, my family and friends. I wish I could say that I never have reactions like this, but they are almost a daily occurrence. The most frequent cause for me is the one at a time principle that I am often preaching. If I am doing most anything at all, when you add something onto it, I go into overload. I will not respond properly to questions or understand what is being said. This has been getting progressively worse along with the disease itself. If I am trying to read, listening to music or most any thing that seems innocuous to observers, it is taking all of my concentration. If you break it down, not only am I doing the task I mention, but often also thinking about things. My reduced brain capacity is totally occupied because that is what it takes to do what I am doing. Trying to ask even a simple question takes the risk of me exploding.
As this quote says, it is because it is overwhelming, plain and simple. It can cause me to become frustrated or angry (at the world, usually not at the person asking). Part of the reason is that I know that I should be able to deal with it and cannot. Most often the frustration and anger is at myself and at the disease. It is important for everyone around me to know that when I do explode, it is not necessarily directed at them. It is just that the one more little thing being presented to me is the proverbial straw that broke the camel's back. While the one interrupting me understands this in theory, it is difficult to remain calm when I am yelling, slamming things or worse.
It was a such coincidence that my friend posted this today because it is related to what I was going to write about today. I was planning on using this past week as a perfect example of me not being able to deal with more than one thing.
Three weeks ago, I had a medical test performed on me. That was a stress for that day, but the next 10 days waiting for the results were not because I knew it was a "just in case" test that was performed plus there was a very valid reason for the results taking so long. When I finally got the call with the results is when it started getting stressful. They wanted another test because something had shown up on the first go around. This was a little more than a week ago. They got me scheduled for the second test just two days after that call. I still wasn't concerned and was not feeling anxious except for the disruption to my schedule by the unexpected medical visits. Any disruption in routine can be frustrating.
Unfortunately, that second test was inconclusive and I was told the next step was a small surgical procedure. This particular testing is only done one day out of every two weeks, but they had room for me in the testing day coming up in five days. On that day, I was home within six hours of the time I reported to the hospital. It was just stressful enough that the rest of that day plus the following day, I felt confused and had the feeling that something was wrong. Fortunately, my husband did understand that all the times I blew up at him was me being overwhelmed. We have made an effort since then to not add anything to my schedule and not tried to add any activities here at home.
We still have two days to wait for the results so we will continue this relaxed schedule. My sister stepped up to the bat and took me in for the procedure because my husband was unable to do so. My wonderful friend also offered to take me to the appointment. It is awesome to have people to rely on. My sister also brought us a lot of food that we have supplemented with carry out food that my husband has gone out for so I was able to follow the 3 days of restrictions. Finally, today, I am cooking, but it is one of our favorite and easiest to prepare meals and one that is conducive to us doing it together. My husband has been perfectly following the advice given by ThePurpleSherpa.org even before I saw it. He has tried to keep our routine a little more relaxed than usual and has been understanding about the extra stress this has caused me.
It was such a coincidence that I saw this post shortly before I was going to write this. It made it a little long but, hopefully, made both the helpful advice and my actual events easier to understand. To the caregivers out there, please take this advice to heart. It is a necessary thing to understand if you want any calmness in your lives. It is also necessary for my husband and I to continue remembering as we go through the next few days.
Saturday, May 27, 2017
I Wasn't Hiding a Thing
I promise to try to keep this as least a little upbeat.
I have been down in the dumps ever since returning from the conference and the extra few days playing tourist with my daughter. After a week or so, I realized it was due to the fact that I look forward to the conference for several months. Really, really look forward to it. Not only do I learn more about the disease, but I know I will be surrounded by people who all understand it. Adding in the mother/daughter time and it is as close to Nirvana as I seem to be able to reach with FTD.
I think it is pretty much normal to feel down after enjoying that time so much. The same thing happens to me for a week or two after Christmas. Same reasoning applies.
I did not realize just how miserable I was coming across until this morning. I truly believed I was doing a decent job of hiding it. A couple hours ago, I pulled a package of hotdogs out of the freezer. I was determined to have picnic food even though it is cold and rainy. Have to have picnic food for the Memorial Day holiday. Not sure how it relates to honoring all who sacrificed their lives to defend our country, but tradition it has become.
For some reason, the old (very old) jingle for Armour hotdogs popped into my mind and I started singing it. It is pretty scary when you realize all the non-politically correct it would be today. "Hot dogs, Armour hot dogs. What kind of kids eat Armour Hot Dogs? Fat kids, skinny kids, kids who climb on rocks. Tough kids, sissy kids, even kids with chicken post love hot dogs, Armour hot dogs, The dogs kids love to bite!"
See what I mean? No way it would play today! Back to my point, we did not have Armour hot dogs, just two different other brands. My husband and I cannot agree on the best hot dogs, so we have two brands when we have them. Personally, anyone who doesn't love Nathan's hotdogs doesn't have good taste, but I will leave that up to you.
The reason I have gone through this long hotdog story. When the song popped into my head, I had to sing it, with gusto! My husband looked at me like I was crazy. Well, there is that, but let's ignore that. He couldn't remember it and, I suspect, forgot that FTD has not affected my long term memory. After I had retreated back to my computer, he stuck his head in the door and said "It's good to hear you be upbeat, even if it was just for a hotdog jingle."
I thought I had been hiding how down I had been feeling. Virtual slap in the face, girl... you haven't hid it at all!
I have little reminder signs in a few strategic places in the house to remind me to smile and think of good things. I guess I need to start actually seeing the signs again. So, today, when I see the signs, I will think of the lunch out with my friend yesterday and the sinful dessert that I brought home and was able to make into 3 portions to spread out the yummy. It really was 4 portions, but I was extremely generous and let my husband have one. I had the last one as my lunch today. You would have been selfish too if you had tasted this mini caramel cake.
Staying upbeat is going to be difficult this week. After an MRI two weeks ago then an ultrasound yesterday, on Wednesday I must have a biopsy. Then I have to wait an entire week for the results. Mentally, I am not nervous and don't really care. What could be worse than FTD, right? Yet, that tiny little bit of fear keeps sneaking in once in a while.
The good news is, they are doing the procedure at 8 a.m. I don't wake up until noon, even if I am out of bed hours before then. I'm hoping that I will sleep right through it! I know I won't, but a girl can dream!
Now, I ask you all if you remembered the jingle? Guess what? If you did, you are really, really old, right along with me! So, sing along with me: "Hotdogs, Armour hotdogs..."
I have been down in the dumps ever since returning from the conference and the extra few days playing tourist with my daughter. After a week or so, I realized it was due to the fact that I look forward to the conference for several months. Really, really look forward to it. Not only do I learn more about the disease, but I know I will be surrounded by people who all understand it. Adding in the mother/daughter time and it is as close to Nirvana as I seem to be able to reach with FTD.
I think it is pretty much normal to feel down after enjoying that time so much. The same thing happens to me for a week or two after Christmas. Same reasoning applies.
I did not realize just how miserable I was coming across until this morning. I truly believed I was doing a decent job of hiding it. A couple hours ago, I pulled a package of hotdogs out of the freezer. I was determined to have picnic food even though it is cold and rainy. Have to have picnic food for the Memorial Day holiday. Not sure how it relates to honoring all who sacrificed their lives to defend our country, but tradition it has become.
For some reason, the old (very old) jingle for Armour hotdogs popped into my mind and I started singing it. It is pretty scary when you realize all the non-politically correct it would be today. "Hot dogs, Armour hot dogs. What kind of kids eat Armour Hot Dogs? Fat kids, skinny kids, kids who climb on rocks. Tough kids, sissy kids, even kids with chicken post love hot dogs, Armour hot dogs, The dogs kids love to bite!"
See what I mean? No way it would play today! Back to my point, we did not have Armour hot dogs, just two different other brands. My husband and I cannot agree on the best hot dogs, so we have two brands when we have them. Personally, anyone who doesn't love Nathan's hotdogs doesn't have good taste, but I will leave that up to you.
The reason I have gone through this long hotdog story. When the song popped into my head, I had to sing it, with gusto! My husband looked at me like I was crazy. Well, there is that, but let's ignore that. He couldn't remember it and, I suspect, forgot that FTD has not affected my long term memory. After I had retreated back to my computer, he stuck his head in the door and said "It's good to hear you be upbeat, even if it was just for a hotdog jingle."
I thought I had been hiding how down I had been feeling. Virtual slap in the face, girl... you haven't hid it at all!
I have little reminder signs in a few strategic places in the house to remind me to smile and think of good things. I guess I need to start actually seeing the signs again. So, today, when I see the signs, I will think of the lunch out with my friend yesterday and the sinful dessert that I brought home and was able to make into 3 portions to spread out the yummy. It really was 4 portions, but I was extremely generous and let my husband have one. I had the last one as my lunch today. You would have been selfish too if you had tasted this mini caramel cake.
Staying upbeat is going to be difficult this week. After an MRI two weeks ago then an ultrasound yesterday, on Wednesday I must have a biopsy. Then I have to wait an entire week for the results. Mentally, I am not nervous and don't really care. What could be worse than FTD, right? Yet, that tiny little bit of fear keeps sneaking in once in a while.
The good news is, they are doing the procedure at 8 a.m. I don't wake up until noon, even if I am out of bed hours before then. I'm hoping that I will sleep right through it! I know I won't, but a girl can dream!
Now, I ask you all if you remembered the jingle? Guess what? If you did, you are really, really old, right along with me! So, sing along with me: "Hotdogs, Armour hotdogs..."
Sunday, May 21, 2017
Not So Amusing or Inspiring Today
I normally don't post an entry more than once a week and certainly not two days in a row, but today I must.
After a few days of forcing myself to do too much work, my FTD mind and body are telling me to stop for a while. It did this by awakening me this morning with a really bad FTD headache. After reading as much of the Sunday paper as I could, I retreated to my room and started scrolling through Facebook. Usually, this is a good idea... to catch up with what friends are doing and maybe to laugh at some funny memes. Just doing this can sometimes ease the discomfort.
In hindsight, I now know that today was not the day to do this. The first thing that upset me was the post from one of my fellow graduates from high school. Yesterday, she had posted a tattoo that she had gifted herself to celebrate her 65th birthday. Today, she posted the results of one of those mind-numbing quizzes that told her, along with the rest of the world, that she still acted like she was 26. It then went on inviting me to take the quiz, asking "How old do you really act?" Reality hit me in the face because I know that since FTD hit, I act much older than my 63 years.
There is no reason for her to not post these things. She was proud of them and darned well should be. She is one of the most active new "senior" citizens that I have ever known. She volunteers, travels and is just an all around nice person. The problem was that, feeling as exhausted and unable to do anything today as I do, it hit me hard. Her posts made me feel like I was missing things that I wish I could do. I actually cried and had a little pity party until I realized how silly I was being. Now I am just happy for her, as I should be.
Just when I was feeling better, I came across a meme posted by a friend that read "God will always lead you to be where you need to be. In His time not yours. Just trust and believe." Okay, I believe in God and talk to him everyday. I refuse to believe that God has lead me to have this horrid disease. I refuse to believe that He deliberately steals more of my functioning abilities every day. I refuse to believe that He is deliberately leading me to a slow and painful death that will take months or even years to finally end my life. If it was God's will that I should suffer from this disease, should I believe that he has prevented all the top scientists and doctors from finding treatment or a cure?
Yes, I know I over reacted once again. I totally understand the beautiful words she was sharing, hoping to encourage everyone reading it. Unfortunately, though, I believe that if I am to literally believe these words, I just might start doubting my faith. I kicked myself in the butt again for twisting this beautiful sentiment into something disturbing. I realized, once again, it was the fact that my body was rebelling against me today that had skewed my reasoning.
Then, came the final blow and this one has no justification for it being posted. A friend had shared the post of a comedian. In the video, a woman in what appeared to be a power wheelchair needed to get up a level in a busy place. I am imagining it was an airport or shopping mall. She attempted to ride an escalator, in her wheelchair, to the next level. You can imagine the horror of what happened. She, almost immediately, tipped over. It appeared that she was unable to separate her from the wheelchair and was being hurt as she was being held down against the escalator by the chair. It was reassuring that others came to her aid. But... there was also a video running of a comedian. He just kept repeating that he would not comment on this, making it obvious how badly he would like to make fun of it but he was not going to do it. Wow, what a saint!
I cannot believe he posted this or that so many others have shared his post. Why do people not realize that those in wheelchairs are not necessarily burdened with "just" a physical impediment. I found it necessary to respond to this one. I wrote that I am also forced to use a cane or ride in a wheelchair. This is because my brain is unable to communicate with my legs when and how to move. FTD, right along with the walking issue, steals the ability to process circumstances and make proper decisions to stay safe.
I pray, to the God I still believe in, that I will never find myself in this woman's position. I also pray that if I do, that those witnessing the accident will see it as the dangerous result of a deteriorating brain, and not find it so amusing.
I will end my rant here. I usually like to conclude my blog entries with something amusing or at least light-hearted. Nothing to be found in this one provides me with anything for that today. Some times, the things people find hysterical or uplifting result in just the opposite.
After a few days of forcing myself to do too much work, my FTD mind and body are telling me to stop for a while. It did this by awakening me this morning with a really bad FTD headache. After reading as much of the Sunday paper as I could, I retreated to my room and started scrolling through Facebook. Usually, this is a good idea... to catch up with what friends are doing and maybe to laugh at some funny memes. Just doing this can sometimes ease the discomfort.
In hindsight, I now know that today was not the day to do this. The first thing that upset me was the post from one of my fellow graduates from high school. Yesterday, she had posted a tattoo that she had gifted herself to celebrate her 65th birthday. Today, she posted the results of one of those mind-numbing quizzes that told her, along with the rest of the world, that she still acted like she was 26. It then went on inviting me to take the quiz, asking "How old do you really act?" Reality hit me in the face because I know that since FTD hit, I act much older than my 63 years.
There is no reason for her to not post these things. She was proud of them and darned well should be. She is one of the most active new "senior" citizens that I have ever known. She volunteers, travels and is just an all around nice person. The problem was that, feeling as exhausted and unable to do anything today as I do, it hit me hard. Her posts made me feel like I was missing things that I wish I could do. I actually cried and had a little pity party until I realized how silly I was being. Now I am just happy for her, as I should be.
Just when I was feeling better, I came across a meme posted by a friend that read "God will always lead you to be where you need to be. In His time not yours. Just trust and believe." Okay, I believe in God and talk to him everyday. I refuse to believe that God has lead me to have this horrid disease. I refuse to believe that He deliberately steals more of my functioning abilities every day. I refuse to believe that He is deliberately leading me to a slow and painful death that will take months or even years to finally end my life. If it was God's will that I should suffer from this disease, should I believe that he has prevented all the top scientists and doctors from finding treatment or a cure?
Yes, I know I over reacted once again. I totally understand the beautiful words she was sharing, hoping to encourage everyone reading it. Unfortunately, though, I believe that if I am to literally believe these words, I just might start doubting my faith. I kicked myself in the butt again for twisting this beautiful sentiment into something disturbing. I realized, once again, it was the fact that my body was rebelling against me today that had skewed my reasoning.
Then, came the final blow and this one has no justification for it being posted. A friend had shared the post of a comedian. In the video, a woman in what appeared to be a power wheelchair needed to get up a level in a busy place. I am imagining it was an airport or shopping mall. She attempted to ride an escalator, in her wheelchair, to the next level. You can imagine the horror of what happened. She, almost immediately, tipped over. It appeared that she was unable to separate her from the wheelchair and was being hurt as she was being held down against the escalator by the chair. It was reassuring that others came to her aid. But... there was also a video running of a comedian. He just kept repeating that he would not comment on this, making it obvious how badly he would like to make fun of it but he was not going to do it. Wow, what a saint!
I cannot believe he posted this or that so many others have shared his post. Why do people not realize that those in wheelchairs are not necessarily burdened with "just" a physical impediment. I found it necessary to respond to this one. I wrote that I am also forced to use a cane or ride in a wheelchair. This is because my brain is unable to communicate with my legs when and how to move. FTD, right along with the walking issue, steals the ability to process circumstances and make proper decisions to stay safe.
I pray, to the God I still believe in, that I will never find myself in this woman's position. I also pray that if I do, that those witnessing the accident will see it as the dangerous result of a deteriorating brain, and not find it so amusing.
I will end my rant here. I usually like to conclude my blog entries with something amusing or at least light-hearted. Nothing to be found in this one provides me with anything for that today. Some times, the things people find hysterical or uplifting result in just the opposite.
Saturday, May 20, 2017
Unpredictable Weather, Unpredictable Brain
There is an old joke that if you are in Pennsylvania and you don't like the weather, just wait ten minutes. It is not quite that bad, but our weather can indeed be unpredictable. We had three days of unusual temperatures over 90 degrees this week. We are not used to August weather in May! Now, today, it is down into the 50's with lower humidity.
This week, my days with FTD were just as unpredictable as Pennsylvania weather. The first two days of the heat wave, I did not have any energy or ambition. My head hurt with its usual FTD headache and I wanted to just sit and do what a do a lot of days, accomplishing absolutely nothing. Well, if you consider sitting on the couch looking out at nothing as something, then I do accomplish something. For once, my brain told me that it was stupid to do that because I know that if I was able to get something done, even if it was a small thing, I would feel better. My head would still hurt, but since it wasn't as bad as they sometimes are, I decided I could do it.
The first day, I had my husband take me out to buy some herbs and flowers, along with some potting soil. When we got back, I went out to the deck and planted them all in planters and pleaded to the chipmunk gods that they would not eat them all this year. I hid the basil from them because they seem to eat that the quickest. For three years now, knock on wood, they have not found it growing on the front porch. It didn't take long, an hour and a half including the trip to get everything. That was a good day and the deck was starting to look better. It was a good choice of things to do, it just seemed right on a beautiful "summer" day.
The next day, my friend drug me to a meeting of our church's women's group. It was an interesting program and I got to see a lot of women I had not seen for a while. It also did my heart good that they seemed to be sincerely happy to see me! When she brought me home, I was worn out. Socializing can can be exhausting to someone with FTD, especially in crowded and/or noisy surroundings. I was happy that I had made it through and had a good time.
When I arrived, my husband was just going out to dig up a couple small bushes I wanted gone. I decided to go out and keep him company, but then started cleaning out all the dying daffodil and tulip leaves from the flower beds. I ended up with a barrel full of them, but it was a much easier task than it sounds because they snapped right off. The sun had gone under some clouds and a soft breeze was blowing which made it almost enjoyable. I was back inside in less than an hour.
By taking my own advice and accomplishing something both of those days did bring me out of my funk and, thankfully, my FTD headache was easing a bit, So I decided I could do something again on what was the third day of the heatwave. I usually keep a squeeze bottle of balsamic glaze in my refrigerator. It is simple to make. I just pour in a bunch of (yes, this is an acceptable exact measurement) balsamic vinegar and a bit of sugar or agave syrup into a saucepan and simmer it until it reduces by about a half. I usually test its readiness by putting a drop on the cool countertop to see if it spreads or remains a bead. My FTD brain told me that since I am having to wipe the counter so often, just put that drop into the palm of my hand. What made sense to my FTD brain was downright stupid. Who would put syrup that had been boiling for a couple hours onto their skin?
I survived the burn with just a tiny blister, the syrup was ready and I poured it into a squeeze bottle. FTD brain says, "Give it a shake." Not a good idea at all. The hot syrup softened the plastic enough that some splashed out from under the cap, all over the wall, counter, everything on the counter and my shirt. As soon as I got all that cleaned up, I shoved that bottle right into the frig to stay. Good news is that a bottle usually lasts me six months so I should be safe for a while.
I had a little lunch and still had some energy. I went out onto the deck, armed with cleaning supplies and tackled cleaning the deck furniture. It was going well, I was getting soaked but it felt good since it was so hot. I had quite a few pieces scrubbed and placed where I wanted them, then started to tackle a pair of chairs that were really dirty. The dirt resisted even the soapy scrub brush, so I decided to use some full-strength cleaner. It worked pretty well, but the old FTD brain did not stop to think that I should recap the bottle. I knocked over and spilled half a bottle of Mr. Clean. I should have hosed it off, I know, but I didn't and I quickly slipped and fell. I imagine that it would have looked like slapstick comedy if anyone had seen. I wasn't hurt, probably just had a few new bruises but that seems to be the case everyday.
After that, I decided I had better not try anything else. Plus, doing just these two tasks had me exhausted. Have I mentioned lately how much FTD sucks? I went back into the house, sat down and stared out the window. At least this time, I had clean furniture to look at! I should also thank God for my husband. Come dinnertime, he suggested the leftover, cold tortellini salad from the refrigerator so I was safe from any more burns.
Today, our weather has changed again. The temperature is in the low 50's and the humidity is down from what it was as well.
Just like the weather, FTD can be totally unpredictable. We can go along for months and then it will suddenly take a down turn. I can be speaking very clearly for an entire day, yet the next day not be able to get words out without getting stuck on the first syllable until my brain realizes what is happening and I stop and start over. I can have good mobility for days, then all of a sudden my limbs stop getting the messages from my brain and I will end up standing with one foot up in the air until I focus hard or take my hand and give the leg a push. Some days, I can have a positive frame of mind and get some things done. Other days, it is back to the sofa and staring out the window. Unpredictable indeed!
This week, my days with FTD were just as unpredictable as Pennsylvania weather. The first two days of the heat wave, I did not have any energy or ambition. My head hurt with its usual FTD headache and I wanted to just sit and do what a do a lot of days, accomplishing absolutely nothing. Well, if you consider sitting on the couch looking out at nothing as something, then I do accomplish something. For once, my brain told me that it was stupid to do that because I know that if I was able to get something done, even if it was a small thing, I would feel better. My head would still hurt, but since it wasn't as bad as they sometimes are, I decided I could do it.
The first day, I had my husband take me out to buy some herbs and flowers, along with some potting soil. When we got back, I went out to the deck and planted them all in planters and pleaded to the chipmunk gods that they would not eat them all this year. I hid the basil from them because they seem to eat that the quickest. For three years now, knock on wood, they have not found it growing on the front porch. It didn't take long, an hour and a half including the trip to get everything. That was a good day and the deck was starting to look better. It was a good choice of things to do, it just seemed right on a beautiful "summer" day.
The next day, my friend drug me to a meeting of our church's women's group. It was an interesting program and I got to see a lot of women I had not seen for a while. It also did my heart good that they seemed to be sincerely happy to see me! When she brought me home, I was worn out. Socializing can can be exhausting to someone with FTD, especially in crowded and/or noisy surroundings. I was happy that I had made it through and had a good time.
When I arrived, my husband was just going out to dig up a couple small bushes I wanted gone. I decided to go out and keep him company, but then started cleaning out all the dying daffodil and tulip leaves from the flower beds. I ended up with a barrel full of them, but it was a much easier task than it sounds because they snapped right off. The sun had gone under some clouds and a soft breeze was blowing which made it almost enjoyable. I was back inside in less than an hour.
By taking my own advice and accomplishing something both of those days did bring me out of my funk and, thankfully, my FTD headache was easing a bit, So I decided I could do something again on what was the third day of the heatwave. I usually keep a squeeze bottle of balsamic glaze in my refrigerator. It is simple to make. I just pour in a bunch of (yes, this is an acceptable exact measurement) balsamic vinegar and a bit of sugar or agave syrup into a saucepan and simmer it until it reduces by about a half. I usually test its readiness by putting a drop on the cool countertop to see if it spreads or remains a bead. My FTD brain told me that since I am having to wipe the counter so often, just put that drop into the palm of my hand. What made sense to my FTD brain was downright stupid. Who would put syrup that had been boiling for a couple hours onto their skin?
I survived the burn with just a tiny blister, the syrup was ready and I poured it into a squeeze bottle. FTD brain says, "Give it a shake." Not a good idea at all. The hot syrup softened the plastic enough that some splashed out from under the cap, all over the wall, counter, everything on the counter and my shirt. As soon as I got all that cleaned up, I shoved that bottle right into the frig to stay. Good news is that a bottle usually lasts me six months so I should be safe for a while.
I had a little lunch and still had some energy. I went out onto the deck, armed with cleaning supplies and tackled cleaning the deck furniture. It was going well, I was getting soaked but it felt good since it was so hot. I had quite a few pieces scrubbed and placed where I wanted them, then started to tackle a pair of chairs that were really dirty. The dirt resisted even the soapy scrub brush, so I decided to use some full-strength cleaner. It worked pretty well, but the old FTD brain did not stop to think that I should recap the bottle. I knocked over and spilled half a bottle of Mr. Clean. I should have hosed it off, I know, but I didn't and I quickly slipped and fell. I imagine that it would have looked like slapstick comedy if anyone had seen. I wasn't hurt, probably just had a few new bruises but that seems to be the case everyday.
After that, I decided I had better not try anything else. Plus, doing just these two tasks had me exhausted. Have I mentioned lately how much FTD sucks? I went back into the house, sat down and stared out the window. At least this time, I had clean furniture to look at! I should also thank God for my husband. Come dinnertime, he suggested the leftover, cold tortellini salad from the refrigerator so I was safe from any more burns.
Today, our weather has changed again. The temperature is in the low 50's and the humidity is down from what it was as well.
Just like the weather, FTD can be totally unpredictable. We can go along for months and then it will suddenly take a down turn. I can be speaking very clearly for an entire day, yet the next day not be able to get words out without getting stuck on the first syllable until my brain realizes what is happening and I stop and start over. I can have good mobility for days, then all of a sudden my limbs stop getting the messages from my brain and I will end up standing with one foot up in the air until I focus hard or take my hand and give the leg a push. Some days, I can have a positive frame of mind and get some things done. Other days, it is back to the sofa and staring out the window. Unpredictable indeed!
Saturday, May 13, 2017
Back to Reality
Life can be demoralizing sometimes. When you have been looking forward to something for a long time and it is over in one day, it can leave an empty space inside you. Take Christmas for example. We spend weeks preparing for the holiday. We decorate, we shop, we wrap, we bake and on and on. Then it is over, all those preparations and anticipation, all gone in one day.
It was like that this week. The annual AFTD Education Conference that I have been looking forward to for so long happened this past Friday. We actually started on Thursday night with a casual dinner for those of us with FTD and our caregivers. This night is so much fun. Get a bunch of us together when we don't have to worry about being judged by anyone and we really let our hair down. I started of by falling while trying to get into the door of the pub. That would not have been so bad, but once I got up and tried to navigate the low step again, I fell just like I did the first time! Now, that did become a bit embarrassing as a customer and an employee tried to come to my rescue. We didn't let it stop us. I was at the head of a group of about eight or ten of us. My daughter just grabbed my arm and told me to slow down and focus. We both focused and watched me lift and move my foot and I was in.
It got worse, once I was through the door, I asked, I think three times. how we get to the 2nd floor. Again, I hear, "Mom, we've got it." Duh, stairs or elevator. Go figure! The good part, no one laughed at me. Well, I was laughing at myself and my daughter was trying desperately to hold it in!
This wonderful dinner and chance to visit with so many of our FTD friends started the event off perfectly. The actual conference the next day was extremely well organized and informative. My friend from our online support group gave a wonderful welcoming speech to get things going. There was a lot of good news on things being done to help advance research into FTD and on things to assist those of us with the disease.
My daughter and I were one of three pairs of FTD'ers and their care partner. We rocked it! The session went very smoothly and was extremely well received.
Soon, the conference was over. I had learned a lot and met a lot of new friends. Yes, my daughter and I stayed a couple more days to see the sights and enjoy each other's company. But... the conference was over. This really hit as soon as my flight home was over. Just like my example of Christmas, it was quite a let down. I was back home to the same routine of every day life with FTD. No more being surrounded by people who truly understand what this life is like and by those who know much more about who generously shared their knowledge.
I was back to the people who don't understand or just don't care to understand. A couple days after returning, I went to our local hospital to have an MRI performed. This was for another part of my body, not my brain. I had been "pre-admitted" so all the questions had been asked and answered. Just as I gowned up, a young man steps up to the dressing room and starts asking me all the same questions. Obviously, he has been over the list many, many times. He was asking all the questions rapid-fire. I put my hand up and explained yet again, that I have dementia. I told him he needed to slow down and ask me one question at a time. He then started reading the questions at a very loud volume, but just as quickly. I stopped him again and said "I have dementia, I am not deaf!" He responded in anger and tried to tell me that was his normal way of talking. We eventually got through all the questions and he turned and started talking to one of the other techs... you guessed it, in a voice that was in a very normal tone and volume.
It is getting more and more difficult to put up with people like that. Especially with him being in the medical field, he should be able to understand. When I first asked him to slow down, I was very calm and polite. The second time, not so calm but still polite. If he continued to be the tech to work with me, I can bet that I would not have been so polite anymore. Ah.... life in the real world of living with FTD.
But, there is good news! Next year's conference is a month earlier, in March, in Chicago. I only have eleven months to wait!!! I must take a second here to thank the AFTD for all the work organizing and putting on this conference. I learned a lot and had a really good time!
It was like that this week. The annual AFTD Education Conference that I have been looking forward to for so long happened this past Friday. We actually started on Thursday night with a casual dinner for those of us with FTD and our caregivers. This night is so much fun. Get a bunch of us together when we don't have to worry about being judged by anyone and we really let our hair down. I started of by falling while trying to get into the door of the pub. That would not have been so bad, but once I got up and tried to navigate the low step again, I fell just like I did the first time! Now, that did become a bit embarrassing as a customer and an employee tried to come to my rescue. We didn't let it stop us. I was at the head of a group of about eight or ten of us. My daughter just grabbed my arm and told me to slow down and focus. We both focused and watched me lift and move my foot and I was in.
It got worse, once I was through the door, I asked, I think three times. how we get to the 2nd floor. Again, I hear, "Mom, we've got it." Duh, stairs or elevator. Go figure! The good part, no one laughed at me. Well, I was laughing at myself and my daughter was trying desperately to hold it in!
This wonderful dinner and chance to visit with so many of our FTD friends started the event off perfectly. The actual conference the next day was extremely well organized and informative. My friend from our online support group gave a wonderful welcoming speech to get things going. There was a lot of good news on things being done to help advance research into FTD and on things to assist those of us with the disease.
My daughter and I were one of three pairs of FTD'ers and their care partner. We rocked it! The session went very smoothly and was extremely well received.
Soon, the conference was over. I had learned a lot and met a lot of new friends. Yes, my daughter and I stayed a couple more days to see the sights and enjoy each other's company. But... the conference was over. This really hit as soon as my flight home was over. Just like my example of Christmas, it was quite a let down. I was back home to the same routine of every day life with FTD. No more being surrounded by people who truly understand what this life is like and by those who know much more about who generously shared their knowledge.
I was back to the people who don't understand or just don't care to understand. A couple days after returning, I went to our local hospital to have an MRI performed. This was for another part of my body, not my brain. I had been "pre-admitted" so all the questions had been asked and answered. Just as I gowned up, a young man steps up to the dressing room and starts asking me all the same questions. Obviously, he has been over the list many, many times. He was asking all the questions rapid-fire. I put my hand up and explained yet again, that I have dementia. I told him he needed to slow down and ask me one question at a time. He then started reading the questions at a very loud volume, but just as quickly. I stopped him again and said "I have dementia, I am not deaf!" He responded in anger and tried to tell me that was his normal way of talking. We eventually got through all the questions and he turned and started talking to one of the other techs... you guessed it, in a voice that was in a very normal tone and volume.
It is getting more and more difficult to put up with people like that. Especially with him being in the medical field, he should be able to understand. When I first asked him to slow down, I was very calm and polite. The second time, not so calm but still polite. If he continued to be the tech to work with me, I can bet that I would not have been so polite anymore. Ah.... life in the real world of living with FTD.
But, there is good news! Next year's conference is a month earlier, in March, in Chicago. I only have eleven months to wait!!! I must take a second here to thank the AFTD for all the work organizing and putting on this conference. I learned a lot and had a really good time!
Saturday, April 29, 2017
Communicating
Communication is one of the most important things in life. How would we learn anything? No communication would mean no books, no computers, no phones, no hearing, no speaking, no writing letters. You've got it, it's a pretty simple concept to grasp, but it would not be a simple concept to live without.
Communication with FTD can be difficult. Aphasia is a symptom of several types of FTD. Aphasia steals the ability to understand words, but usually still allows at least close to normal speech. Dysarthria is another language disorder that impairs or takes away the ability to speak properly. This can include anything from slurring to no verbalization at all. There are other forms of FTD whose primary symptoms are not speech related. However, all forms of FTD can lead to language and comprehension difficulties and make communication extremely difficult.
I do have some speech issues. I stutter quite a bit. I often get stuck on the first syllable of what I am trying to say. If you are old enough to remember records, it is like when the needle would get stuck on the record. I realize it is happening, but have difficulty stopping. When I do stop, I can pause, change the first word and get the thought out. Irritating and puts people off, but not serious.
It seems that many, if not all, with FTD eventually lose abilities to communicate, even if their primary diagnosis was not that of Aphasia. This makes communication between one with FTD and their care partner difficult.
These speech issues are not the only barrier to communication. Some of us, myself includes, attempt to cover up the symptoms of the disease. I cannot speak for others here, but for myself, I think it is an intense desire to be viewed as normal as possible. Another issue, for me, is the inability to clearly explain what the disease does to me and the limitations that it puts on me.
I keep telling others, especially my husband, that I can no longer do the things I used to be able to do. I will try to explain that I can not do the household chores that I used to. It bothers me that my house is not as clean as I like and as I used to keep it. My husband, being a man, does not understand this. Yes, I know some men are just as serious about keeping things neat and clean, but not mine. The other problem with this is that he has no clue as to how much energy it actually takes to clean a house. Plus, this exhaustion, particularly the mental exhaustion is extremely difficult for me to explain.
Yesterday, I gave my bathroom a good cleaning and dry mopped the wooden floors in the hallway and a couple rooms. I was exhausted. The physical exhaustion is not the worst part. It is the mental exhaustion. Figuring out how to clean everything, even trying to remember what products to use and where they are located, is exhausting. I discovered I was out of the cleaning product I usually use to clean our bathrooms. It took me at least 20 minutes of staring at my cleaning supplies to decide what I could substitute. Mental exhaustion is even more debilitating that physical exhaustion, at least to me.
When it came to dinnertime, the last thing I wanted was to attempt to cook something. Instead of admitting that this little bit of cleaning wore me out and I didn't trust myself to cook and to make it edible, I simply said I didn't feel like cooking. I suggested several carry out options, but my husband balked at them. Being the stubborn cuss that I am, I said "Fine, I'll figure out something." I made Philly cheesesteak sandwiches, something I often make. Not too difficult and not too much mess, but certainly more than I wanted to deal with. I substituted flatbread for the rolls and it ended up tough. It was obvious that he was not thrilled with the meal. I have always taken much pride in my cooking talents. Cooking and baking were two of my favorite things pre-FTD.
His displeasure hurt angered me something fierce, but I kept it in. I even apologized for the fact that he did not seem to enjoy the meal. Great way to communicate, right? I let it stew inside me for hours. I could not sleep. I finally got up at 3:30 a.m. and wrote him a note explaining how it had made me feel. If I had tried to explain this to him verbally, it would have been a disaster. When I am upset, I stutter even more. I would not have gotten my thoughts out properly. Yet it was important that I got them out. It was an opportunity to provide him an example of what I mean when I say that I just cannot do it all anymore.
My psychologist is always working with me to improve communication, but I keep falling back into my old habits of not communicating. This morning, when I walked into the kitchen for coffee, I was greeted with a huge apology. Later, I was cleaning the kitchen floor and when I was more than 3/4's done, he asked if he could help. Wait for it... I actually got the word "no" out, then stopped and said, "But if you would run the vacuum in the family room and the bedrooms, that would be awesome." He did it, no grumbling and suggested that I ask him more often. It's a step in the right direction. I was so proud of myself for communicating my need and admitting I need help. I was very appreciative that he communicated his willingness to help. My instinct, though, is to wonder how long it will last. I am doubtful, but maybe it will, if I can learn to say what I need.
In the meantime, I am still looking to hire someone to clean my house. He has physical limitations as well and I think it would take a huge load off both of us. Hopefully, I can communicate to him how important I think this option is and... I hope I can communicate with the cleaner what I need.
Communication with FTD can be difficult. Aphasia is a symptom of several types of FTD. Aphasia steals the ability to understand words, but usually still allows at least close to normal speech. Dysarthria is another language disorder that impairs or takes away the ability to speak properly. This can include anything from slurring to no verbalization at all. There are other forms of FTD whose primary symptoms are not speech related. However, all forms of FTD can lead to language and comprehension difficulties and make communication extremely difficult.
I do have some speech issues. I stutter quite a bit. I often get stuck on the first syllable of what I am trying to say. If you are old enough to remember records, it is like when the needle would get stuck on the record. I realize it is happening, but have difficulty stopping. When I do stop, I can pause, change the first word and get the thought out. Irritating and puts people off, but not serious.
It seems that many, if not all, with FTD eventually lose abilities to communicate, even if their primary diagnosis was not that of Aphasia. This makes communication between one with FTD and their care partner difficult.
These speech issues are not the only barrier to communication. Some of us, myself includes, attempt to cover up the symptoms of the disease. I cannot speak for others here, but for myself, I think it is an intense desire to be viewed as normal as possible. Another issue, for me, is the inability to clearly explain what the disease does to me and the limitations that it puts on me.
I keep telling others, especially my husband, that I can no longer do the things I used to be able to do. I will try to explain that I can not do the household chores that I used to. It bothers me that my house is not as clean as I like and as I used to keep it. My husband, being a man, does not understand this. Yes, I know some men are just as serious about keeping things neat and clean, but not mine. The other problem with this is that he has no clue as to how much energy it actually takes to clean a house. Plus, this exhaustion, particularly the mental exhaustion is extremely difficult for me to explain.
Yesterday, I gave my bathroom a good cleaning and dry mopped the wooden floors in the hallway and a couple rooms. I was exhausted. The physical exhaustion is not the worst part. It is the mental exhaustion. Figuring out how to clean everything, even trying to remember what products to use and where they are located, is exhausting. I discovered I was out of the cleaning product I usually use to clean our bathrooms. It took me at least 20 minutes of staring at my cleaning supplies to decide what I could substitute. Mental exhaustion is even more debilitating that physical exhaustion, at least to me.
When it came to dinnertime, the last thing I wanted was to attempt to cook something. Instead of admitting that this little bit of cleaning wore me out and I didn't trust myself to cook and to make it edible, I simply said I didn't feel like cooking. I suggested several carry out options, but my husband balked at them. Being the stubborn cuss that I am, I said "Fine, I'll figure out something." I made Philly cheesesteak sandwiches, something I often make. Not too difficult and not too much mess, but certainly more than I wanted to deal with. I substituted flatbread for the rolls and it ended up tough. It was obvious that he was not thrilled with the meal. I have always taken much pride in my cooking talents. Cooking and baking were two of my favorite things pre-FTD.
His displeasure hurt angered me something fierce, but I kept it in. I even apologized for the fact that he did not seem to enjoy the meal. Great way to communicate, right? I let it stew inside me for hours. I could not sleep. I finally got up at 3:30 a.m. and wrote him a note explaining how it had made me feel. If I had tried to explain this to him verbally, it would have been a disaster. When I am upset, I stutter even more. I would not have gotten my thoughts out properly. Yet it was important that I got them out. It was an opportunity to provide him an example of what I mean when I say that I just cannot do it all anymore.
My psychologist is always working with me to improve communication, but I keep falling back into my old habits of not communicating. This morning, when I walked into the kitchen for coffee, I was greeted with a huge apology. Later, I was cleaning the kitchen floor and when I was more than 3/4's done, he asked if he could help. Wait for it... I actually got the word "no" out, then stopped and said, "But if you would run the vacuum in the family room and the bedrooms, that would be awesome." He did it, no grumbling and suggested that I ask him more often. It's a step in the right direction. I was so proud of myself for communicating my need and admitting I need help. I was very appreciative that he communicated his willingness to help. My instinct, though, is to wonder how long it will last. I am doubtful, but maybe it will, if I can learn to say what I need.
In the meantime, I am still looking to hire someone to clean my house. He has physical limitations as well and I think it would take a huge load off both of us. Hopefully, I can communicate to him how important I think this option is and... I hope I can communicate with the cleaner what I need.
Saturday, April 22, 2017
Something To Look Forward To
I have mentioned the AFTD before, but just in case you missed it, it is the Association for Fronto Temporal Degeneration. I have also mentioned that their annual education conference is coming up. Right now, it is 12 days away. Okay, it is actually 13 days away. The difference is that the online support group for those of us with FTD happens the evening before and it's only 12 days till that.
The get together is just for those of us with FTD and the caregiver that has accompanied us. Someone asked me a couple days ago how can I enjoy something like that. After all, it is in a pub/restaurant, is most likely crowded and noisy with lots of commotion. Often, when faced with similar circumstances, I become extremely stressed and need to leave. Good question! The fact that it is one of the rare instances during the year that I consume alcohol, that definitely might explain part of it. I think the primary reason is that we, like everyone else, can be in an "up" state. This is probably excitement, adrenaline or whatever you want to call it. Think about it, when you are relaxed and having fun, isn't it easier to keep going?
The other day a few of us with FTD were video chatting and we all said pretty much the same thing. We go to conference and have a great time, make it through a couple very active days as well as the travel days. Then, we crash. I have the week after the conference blocked out for recovery time. Also, the AFTD provides us with a "Quiet Room" where we can go and recharge ourselves or calm ourselves as necessary. No activites, just quietness, in that room. Just like in our everyday life, we do get sensory overload which triggers so many of the bad aspects of FTD such as agitation, cognitive decline, anger and the list continues on and on. By giving us a place where we can go off and be by ourselves, we can make it through the day. Since it is held in a hotel conference center, most of us can go back to our rooms for a bit if necessary as well. I know last year, my daughter and I took our lunches back to our room so I could decompress for an hour.
It is not just because we look forward to the conference so much, it is the joy we find in being surrounded by people with the same disease, the same symptoms and the same frustrations. We don't feel like we have to pretend, we can let out hair down and not worry about what the others are going to think about us because we all understand. If we are stumbling around after having an alcoholic drink, we don't have to worry about others thinking we are drunk, we know it is the FTD. If we are speaking to someone and start stuttering or can't think of words, we know we won't be judged. We share information. There are questions anywhere from symptoms to help with getting Social Security Disability approved.
This conference is also for professionals, in fact in the beginning years of this conference, those with FTD were not invited. So, I'm sure you can understand that there is a lot of information presented on everything from the latest research to care decisions, ways to communicate and so much more. Those of us with FTD are also welcome to attend those sessions as well.
One of the sessions this year is a panel discussion with three pairs of someone with FTD along with their primary care partner. I am so honored that my daughter and I have been asked to be part of this panel. If you regularly read my blog, you know how important it is to me to share any and all information that I have in the hope that it just might help someone else. As I say repeatedly, I have experienced dementia from both sides... as a care partner and with FTD. I don't have any more information than the next person, but it does make it a bit easier for me to see the frustrations that both sides are experiencing. I know I will also learn from hearing the stories of the other pairs.
Throughout the conference day, there are break out sessions to provide everyone choices to sit in on the subjects that interest them most. There are also break out sessions for those of us with FTD to cover subjects that are more interesting to us. The nice part, for me, is that it is only us. You have to have FTD to join in these sessions. Again, no threat of judgement.
I will admit, that despite all the information we will hear and share, the part of the conference I look most forward to is the camaraderie. I look forward to meeting, face to face, those I talk with online. I look forward to all the hugs, all the laughter and all the understanding that we share. This will be only the second conference I have attended. Others have attended many more than that, have more knowledge than I do and know more of the people. That does not matter though, we all are on common ground. It is the only place I have found where I feel totally comfortable to let my hair down and have a good time.
For instance, last year, at the reception following the conference, I spilled a full cup of coffee all over the buffet table. It happened because I was trying to fix my cup of coffee and hang on to my cane at the same time. I was mortified until I realized people were laughing with me and several told me about similar experiences. They didn't care one bit that I am so clumsy that I spill things, because they do too!
As I said, 12 days and counting!
The get together is just for those of us with FTD and the caregiver that has accompanied us. Someone asked me a couple days ago how can I enjoy something like that. After all, it is in a pub/restaurant, is most likely crowded and noisy with lots of commotion. Often, when faced with similar circumstances, I become extremely stressed and need to leave. Good question! The fact that it is one of the rare instances during the year that I consume alcohol, that definitely might explain part of it. I think the primary reason is that we, like everyone else, can be in an "up" state. This is probably excitement, adrenaline or whatever you want to call it. Think about it, when you are relaxed and having fun, isn't it easier to keep going?
The other day a few of us with FTD were video chatting and we all said pretty much the same thing. We go to conference and have a great time, make it through a couple very active days as well as the travel days. Then, we crash. I have the week after the conference blocked out for recovery time. Also, the AFTD provides us with a "Quiet Room" where we can go and recharge ourselves or calm ourselves as necessary. No activites, just quietness, in that room. Just like in our everyday life, we do get sensory overload which triggers so many of the bad aspects of FTD such as agitation, cognitive decline, anger and the list continues on and on. By giving us a place where we can go off and be by ourselves, we can make it through the day. Since it is held in a hotel conference center, most of us can go back to our rooms for a bit if necessary as well. I know last year, my daughter and I took our lunches back to our room so I could decompress for an hour.
It is not just because we look forward to the conference so much, it is the joy we find in being surrounded by people with the same disease, the same symptoms and the same frustrations. We don't feel like we have to pretend, we can let out hair down and not worry about what the others are going to think about us because we all understand. If we are stumbling around after having an alcoholic drink, we don't have to worry about others thinking we are drunk, we know it is the FTD. If we are speaking to someone and start stuttering or can't think of words, we know we won't be judged. We share information. There are questions anywhere from symptoms to help with getting Social Security Disability approved.
This conference is also for professionals, in fact in the beginning years of this conference, those with FTD were not invited. So, I'm sure you can understand that there is a lot of information presented on everything from the latest research to care decisions, ways to communicate and so much more. Those of us with FTD are also welcome to attend those sessions as well.
One of the sessions this year is a panel discussion with three pairs of someone with FTD along with their primary care partner. I am so honored that my daughter and I have been asked to be part of this panel. If you regularly read my blog, you know how important it is to me to share any and all information that I have in the hope that it just might help someone else. As I say repeatedly, I have experienced dementia from both sides... as a care partner and with FTD. I don't have any more information than the next person, but it does make it a bit easier for me to see the frustrations that both sides are experiencing. I know I will also learn from hearing the stories of the other pairs.
Throughout the conference day, there are break out sessions to provide everyone choices to sit in on the subjects that interest them most. There are also break out sessions for those of us with FTD to cover subjects that are more interesting to us. The nice part, for me, is that it is only us. You have to have FTD to join in these sessions. Again, no threat of judgement.
I will admit, that despite all the information we will hear and share, the part of the conference I look most forward to is the camaraderie. I look forward to meeting, face to face, those I talk with online. I look forward to all the hugs, all the laughter and all the understanding that we share. This will be only the second conference I have attended. Others have attended many more than that, have more knowledge than I do and know more of the people. That does not matter though, we all are on common ground. It is the only place I have found where I feel totally comfortable to let my hair down and have a good time.
For instance, last year, at the reception following the conference, I spilled a full cup of coffee all over the buffet table. It happened because I was trying to fix my cup of coffee and hang on to my cane at the same time. I was mortified until I realized people were laughing with me and several told me about similar experiences. They didn't care one bit that I am so clumsy that I spill things, because they do too!
As I said, 12 days and counting!
Friday, April 14, 2017
It Doesn't Take Much to Become Too Much
I usually take time each day to visit the online support groups that are for both caregivers and those with FTD. There is one complaints and/or questions that are posted by caregivers way too often. This is the complaint that the loved one they are caring for "just wants to sleep all the time." That one, or "just wants to sit and do nothing" all the time. I cringe every time I read these types of questions. No matter how much I, and others with FTD, try, we cannot convince them that it is not that they "want" to sleep all the time or "want" to sit and do nothing. It is more like they "need" to sleep all the time and "cannot" be doing things. The loved one is not being lazy or uncooperative just to irritate the caregiver/s, I assure you.
I can really only speak for myself, though I see others with FTD saying the same thing. There are days that we cannot seem to get enough sleep, or that we have no motivation or energy to do anything. These things can be made worse by their surroundings or the previous day's activities or just about anything that requires brain power. That includes everything!
This past Sunday was a "down" day for me. I played on the computer, wrote a blog entry and just goofed off all day. The dinner I fixed was super easy. It was a good day to recharge myself. Unfortunately, every week, Monday always comes next. I really wish we could change it around once in a while. Monday is our grocery shopping day. We found out from the store manager that it is their slowest day, so that is when we shop. I make the grocery list on Sunday, just to soften the load on Monday.
This past Monday was no exception. I was already feeling stressed that morning, so I actually took a .5mg Ativan. Shopping actually did go a little bit better than usual, so when we got home and got everything put away, my husband and were still speaking to each other and I hadn't locked myself away in my quiet room. So, he suggested we make a run to Sam's Club. We only needed six things so it shouldn't be too bad. Wishful thinking!
It was a fairly quick trip through the store. The downfalls were the noises of the forklifts running and beeping, people diving in front of me with their carts, just too many stimuli. Plus, who told them it was okay to move things around to different locations? Sure wasn't me, I don't do change! But we survived and made it home just fine.
The problem was that I was totally exhausted, both physically and emotionally. My brain had to work itself much too hard by the end of that second shopping trip. The next day, Tuesday was spent trying to figure out where my husband had lost his ring of store discount cards. I don't know if this exists everywhere, but here in PA, every store has a discount program for you to join and you need to have a card or key tag to get the discounts. We were trying to figure out where he was the last time he remembered using it and it had been five days. He did the running around trying to hit all the stores he had visited since then, but the ordeal taxed my brain and again left me exhausted.
Wednesday, a friend took me to lunch. It was a gorgeous day, so we went to a park to walk off the lunch. It was fun, two "old" ladies walking along an uneven path with their canes. It was quite nice, truly. Thursday, is our usual "appointment day." I went to the doctor's office for a shot and to the chiropractor, then we stopped at our favorite diner-style restaurant for lunch. When we got home, I realized I did not have my cane. Plus, a package we were to leave at the chiropractor's office was still in the car. So we retraced all our stops again. I had left my cane hanging on the counter while paying our lunch tab and they had recognized it as mine, so it was easy to get it back. Then we had to stop for gas and go to the ATM for some cash.
None of these things, by themselves, are too much for my FTD-raddled brain to handle. Start bundling together like we did, and my brain becomes a disaster. My head was spinning, I couldn't focus on anything. I couldn't think about dinner. I ate half a piece of pie we had brought home from our lunch and a cup of tea. I was in bed by 7 p.m. I needed peace, quiet and darkness to survive.
I am still feeling the effects of the brain overload today. I slept almost 12 hours, but my brain is still in what I call it's "spin cycle." That is what it feels like to me when it becomes overloaded. The brain is spinning, trying to figure things out... what to do, how to do it, trying to not scream. I tried to do the puzzles I normally do in the newspaper, but I just sat there and stared at them. I just couldn't do them.
So, I am in my quiet room and this is where I shall stay as much as I can today. I am giving myself the day off tomorrow as well. That is the only way for me to get re-centered and my brain to get back to where it can function up to its ability.
This is what I want those caregivers to try to understand. I am fortunate that my husband finally understand this concept and can tell when I need down time. It's not that I don't want to do some things today, it's that I can't. It wasn't that I didn't want to watch the baseball game with him last night, it's that I couldn't. A friend called today. It wasn't that I didn't want to talk to her, it was that I couldn't I had trouble understanding what she was telling me or how I should be responding.
Usually my weeks are not as hectic as this one became, thankfully! Those of us with FTD can only do what we can and we must remember to not push ourselves to the point of breaking down. This is true for the caregivers as well, but if they could try to understand that we do what we can, it might make it easier for them to deal with the exhausting days.
I can really only speak for myself, though I see others with FTD saying the same thing. There are days that we cannot seem to get enough sleep, or that we have no motivation or energy to do anything. These things can be made worse by their surroundings or the previous day's activities or just about anything that requires brain power. That includes everything!
This past Sunday was a "down" day for me. I played on the computer, wrote a blog entry and just goofed off all day. The dinner I fixed was super easy. It was a good day to recharge myself. Unfortunately, every week, Monday always comes next. I really wish we could change it around once in a while. Monday is our grocery shopping day. We found out from the store manager that it is their slowest day, so that is when we shop. I make the grocery list on Sunday, just to soften the load on Monday.
This past Monday was no exception. I was already feeling stressed that morning, so I actually took a .5mg Ativan. Shopping actually did go a little bit better than usual, so when we got home and got everything put away, my husband and were still speaking to each other and I hadn't locked myself away in my quiet room. So, he suggested we make a run to Sam's Club. We only needed six things so it shouldn't be too bad. Wishful thinking!
It was a fairly quick trip through the store. The downfalls were the noises of the forklifts running and beeping, people diving in front of me with their carts, just too many stimuli. Plus, who told them it was okay to move things around to different locations? Sure wasn't me, I don't do change! But we survived and made it home just fine.
The problem was that I was totally exhausted, both physically and emotionally. My brain had to work itself much too hard by the end of that second shopping trip. The next day, Tuesday was spent trying to figure out where my husband had lost his ring of store discount cards. I don't know if this exists everywhere, but here in PA, every store has a discount program for you to join and you need to have a card or key tag to get the discounts. We were trying to figure out where he was the last time he remembered using it and it had been five days. He did the running around trying to hit all the stores he had visited since then, but the ordeal taxed my brain and again left me exhausted.
Wednesday, a friend took me to lunch. It was a gorgeous day, so we went to a park to walk off the lunch. It was fun, two "old" ladies walking along an uneven path with their canes. It was quite nice, truly. Thursday, is our usual "appointment day." I went to the doctor's office for a shot and to the chiropractor, then we stopped at our favorite diner-style restaurant for lunch. When we got home, I realized I did not have my cane. Plus, a package we were to leave at the chiropractor's office was still in the car. So we retraced all our stops again. I had left my cane hanging on the counter while paying our lunch tab and they had recognized it as mine, so it was easy to get it back. Then we had to stop for gas and go to the ATM for some cash.
None of these things, by themselves, are too much for my FTD-raddled brain to handle. Start bundling together like we did, and my brain becomes a disaster. My head was spinning, I couldn't focus on anything. I couldn't think about dinner. I ate half a piece of pie we had brought home from our lunch and a cup of tea. I was in bed by 7 p.m. I needed peace, quiet and darkness to survive.
I am still feeling the effects of the brain overload today. I slept almost 12 hours, but my brain is still in what I call it's "spin cycle." That is what it feels like to me when it becomes overloaded. The brain is spinning, trying to figure things out... what to do, how to do it, trying to not scream. I tried to do the puzzles I normally do in the newspaper, but I just sat there and stared at them. I just couldn't do them.
So, I am in my quiet room and this is where I shall stay as much as I can today. I am giving myself the day off tomorrow as well. That is the only way for me to get re-centered and my brain to get back to where it can function up to its ability.
This is what I want those caregivers to try to understand. I am fortunate that my husband finally understand this concept and can tell when I need down time. It's not that I don't want to do some things today, it's that I can't. It wasn't that I didn't want to watch the baseball game with him last night, it's that I couldn't. A friend called today. It wasn't that I didn't want to talk to her, it was that I couldn't I had trouble understanding what she was telling me or how I should be responding.
Usually my weeks are not as hectic as this one became, thankfully! Those of us with FTD can only do what we can and we must remember to not push ourselves to the point of breaking down. This is true for the caregivers as well, but if they could try to understand that we do what we can, it might make it easier for them to deal with the exhausting days.
Sunday, April 9, 2017
Clinging to the Lifeline of the AFTD
I had already written an entire blog entry. When I finished and read over it, I realized it was all about me and my feelings. I was whining because someone had questioned my motives for what I do and hurt my feelings. My feelings don't matter, it is all about educating people about the disease and its ramifications and, hopefully, helping someone better cope with it. So I erased the whole thing and started over.
While dealing with this disease, I have met a lot of people, in person and online. It is awesome to have gotten to know so many other people who are dealing with FTD, those with the disease, as well as those caring for someone who has it. I have to remind myself that 99% of the people I encounter are totally supportive of one another, including me. It is these friends, most of whom I have met through online support groups, who have become a lifeline for me. After my diagnosis, I was feeling lost and hopeless until I found these groups and met these people. It is through many of their examples that I started to advocate for the disease.
The term "lifeline" is defined as a rope used to rescue someone who has fallen from a ship into the water or used to tie the sailors to the ship during rough seas. I often talk about my lifelines and find the term to be perfect. Without any of them, I would still be floundering around in the rough waters of FTD. I have often talked about having four of them: my daughter, my husband, my therapist and my online support groups. They are all equally important. Without any of them, I would still be wallowing in self pity and anger over being diagnosed with FTD. I think there should be a fifth lifeline, one that I often rely on, yet did not realize how important they are to me.
I am talking about the AFTD, The Association for Frontotemporal Degeneration. I learned about this organization when I first decided to learn about the disease and to not sit around and feel sorry for myself. Through them, I found links to much information about the disease and these links led to even more. It was through their online support group that I was invited to join a couple more. Without them, I would not have the online support from all these friends I rely on for advice, understanding, commiseration and laughter. I would also not have found a lot of the information that I have shared with my family to help them better understand what effect this disease has on me. I'll even be honest, they would not understand why I am sometimes royally difficult to deal with.
This organization puts in a lot of effort toward fundraising and supporting research from those funds. They also have a great system of outreach to help educate everyone about FTD and all the subgroups that make up FTD. One of the ways they do this is by holding an annual conference on FTD to educate professionals. A few years ago, they started including those of us with the disease and our caregivers.
I attended my first conference last year after much encouragement from my support group. This conference was just amazing! To be able to meet the AFTD staff and get to know their organization better was quite helpful. The conference sessions were quite informative and there was much printed information that could be obtained. The best part of the conference was definitely being together with so many people who are also dealing with the disease. We were able to compare notes, swap stories, share coping mechanisms and get to personally meet many members of the support groups. I was able to relax, let my hair down, and have fun. I knew these would be non-judgmental people who would not judge me if I said or did the wrong thing. I had not had so much fun since I had received my diagnosis. That my daughter attended with me made it perfect.
Do I sound excited about the AFTD conference? Oh, yeah! This year's conference is 3 weeks and 4 days away. I won't start counting in days until it reaches the 3-week point. Can you even begin to imagine party time with a whole bunch of FTD'ers? Believe me, it is amazingly fun.
This year, not only are we attending, but my daughter and I are participating in the program. We have been invited to be part of a panel discussion with 3 pairs of FTD'ers and their caregivers. What an honor and opportunity to share! Hopefully it is a day when I can speak well and don't keep stuttering, but I will have my daughter next to me to remind to pause and start over. In addition, these people know about FTD. If I have a problem speaking, they will understand why.
3 weeks, 4 days and counting!!! Look out Baltimore, we're coming!!!
While dealing with this disease, I have met a lot of people, in person and online. It is awesome to have gotten to know so many other people who are dealing with FTD, those with the disease, as well as those caring for someone who has it. I have to remind myself that 99% of the people I encounter are totally supportive of one another, including me. It is these friends, most of whom I have met through online support groups, who have become a lifeline for me. After my diagnosis, I was feeling lost and hopeless until I found these groups and met these people. It is through many of their examples that I started to advocate for the disease.
The term "lifeline" is defined as a rope used to rescue someone who has fallen from a ship into the water or used to tie the sailors to the ship during rough seas. I often talk about my lifelines and find the term to be perfect. Without any of them, I would still be floundering around in the rough waters of FTD. I have often talked about having four of them: my daughter, my husband, my therapist and my online support groups. They are all equally important. Without any of them, I would still be wallowing in self pity and anger over being diagnosed with FTD. I think there should be a fifth lifeline, one that I often rely on, yet did not realize how important they are to me.
I am talking about the AFTD, The Association for Frontotemporal Degeneration. I learned about this organization when I first decided to learn about the disease and to not sit around and feel sorry for myself. Through them, I found links to much information about the disease and these links led to even more. It was through their online support group that I was invited to join a couple more. Without them, I would not have the online support from all these friends I rely on for advice, understanding, commiseration and laughter. I would also not have found a lot of the information that I have shared with my family to help them better understand what effect this disease has on me. I'll even be honest, they would not understand why I am sometimes royally difficult to deal with.
This organization puts in a lot of effort toward fundraising and supporting research from those funds. They also have a great system of outreach to help educate everyone about FTD and all the subgroups that make up FTD. One of the ways they do this is by holding an annual conference on FTD to educate professionals. A few years ago, they started including those of us with the disease and our caregivers.
I attended my first conference last year after much encouragement from my support group. This conference was just amazing! To be able to meet the AFTD staff and get to know their organization better was quite helpful. The conference sessions were quite informative and there was much printed information that could be obtained. The best part of the conference was definitely being together with so many people who are also dealing with the disease. We were able to compare notes, swap stories, share coping mechanisms and get to personally meet many members of the support groups. I was able to relax, let my hair down, and have fun. I knew these would be non-judgmental people who would not judge me if I said or did the wrong thing. I had not had so much fun since I had received my diagnosis. That my daughter attended with me made it perfect.
Do I sound excited about the AFTD conference? Oh, yeah! This year's conference is 3 weeks and 4 days away. I won't start counting in days until it reaches the 3-week point. Can you even begin to imagine party time with a whole bunch of FTD'ers? Believe me, it is amazingly fun.
This year, not only are we attending, but my daughter and I are participating in the program. We have been invited to be part of a panel discussion with 3 pairs of FTD'ers and their caregivers. What an honor and opportunity to share! Hopefully it is a day when I can speak well and don't keep stuttering, but I will have my daughter next to me to remind to pause and start over. In addition, these people know about FTD. If I have a problem speaking, they will understand why.
3 weeks, 4 days and counting!!! Look out Baltimore, we're coming!!!
Sunday, April 2, 2017
...so I keep on going!
Today, I received a compliment that "made my heart proud". The words came from someone who is very dear to me who is also dealing with a fatal disease. She said to me, "I keep hoping to die, but then I would miss you, so I keep on going." I suspect that to some people this comment would not be taken as much of a complement, nor that it is a good thing. I disagree.
The way I took it was that I am still making a difference in her life. Since most of us cannot or do not make the decision as to when we die, providing even a small reason to make her feel like there is still a little worth living for, is a good thing in my mind. Neither of us can drive anymore, so we do not get together nearly as often as we would like. I wish she lived next door so we could spend time together every day. We settle for phone calls. She says that I can still make her laugh. I love hearing her laugh!
Neither one of us gives the other those false platitudes of "You are looking better," or "I would never know you were sick." We also would never ask the stupid questions of "Are you feeling better?" or "Have 'they' been able to get rid of it yet?"
People mean well when they say these things, I am sure. However, these words are hurtful and/or discouraging. We have mirrors, we know what we look like. We know the disease has aged us very rapidly. Some days I look in the mirror and it seems as if I aged a whole year overnight. Just yesterday, I was looking in the mirror and was thinking about the annual Association for FTD conference coming up in 4 weeks and 4 days. (Yes, I am counting that closely!) I had just come across a picture of me at the conference last year and I realized that I look ten years older. I am not digging for complements, it is reality. Kind of sad, but I have two choices. I could think that "Gee, I really look bad." or "I don't look too bad for someone dealing with a fatal illness!" Guess which one I choose!
There are better questions to ask someone dealing with a fatal disease. Many are just a word or two different than the bad examples: "You look good today" or simply "I am glad to see you." Instead of the stupid questions you could say "Are you having a good day today?" or a very sincere "Is there something I could do for you?" What I wouldn't give for someone to offer to wash my windows or pull some weeds. Sadly, I would most likely answer the offer to help with an emphatic "No!" simply because I am stubborn. don't want anyone to see my dirty house or to do yard work that I, myself, hate to do. Even though I would decline, I would really appreciate that someone cared enough to offer.
What would be better is if someone just showed up one day, armed with some gloves and supplies, and said that I should find someone to take me to lunch because they are going to do (insert helpful chore here). I would be embarrassed most likely, but how can you politely refuse? I am not writing this to make anyone feel guilty enough to do this and I hope no one take it that way. I am fortunate that between my husband and me, we do keep the house clean enough, laundry done and meals prepared. It is only the bigger projects that fall by the wayside.
My friend's husband was just telling me this morning that both lights in his kitchen burned out last week, so he had to climb the ladder and change the bulbs. It scared the bejeebers out of me as he should not be on a ladder. I asked if there wasn't someone they could call to do that. He hem-hawed around, my friend said yes there is but he won't ask. I pictured him trying to get up the ladder while leaning on his cane and started giggling. I told him "You are such a man!" He admitted that asking for help would have made him feel useless. Useless? He spends several days a week driving her to treatments and/or doctor visits, does the cooking,plus keeps up with as much around the house as he is able. They are a tad smarter than I am because they do have someone come in to clean their home and have someone to do most of the yardwork.
In the meantime, she and I compare notes on how compensate in order to do things and what things we can still do to make us feel useful and our brains stimulated. She and I keep each other going and when one of us is feeling down, the other can usually brighten our spirits.
If you reread the first paragraph, it could also make a good argument for our country to allow assisted suicide. When faced with a fatal or debilitating illness, the time does often come when you know it is time to end your own suffering. That, however, is an extremely controversial subject and I do not care to get into the debate in this forum.
On a final note, I am reading a book, "What If It's Not Alzheimer's? A Caregiver's Guide to Dementia, Third Edition" and is very informational so far. It will take me quite a while to read it since any new information takes a long time for my brain to process. I have heard a lot of good comments about it. I have only read the first chapter and already have a better understanding of the brain. I'll keep you posted.
The way I took it was that I am still making a difference in her life. Since most of us cannot or do not make the decision as to when we die, providing even a small reason to make her feel like there is still a little worth living for, is a good thing in my mind. Neither of us can drive anymore, so we do not get together nearly as often as we would like. I wish she lived next door so we could spend time together every day. We settle for phone calls. She says that I can still make her laugh. I love hearing her laugh!
Neither one of us gives the other those false platitudes of "You are looking better," or "I would never know you were sick." We also would never ask the stupid questions of "Are you feeling better?" or "Have 'they' been able to get rid of it yet?"
People mean well when they say these things, I am sure. However, these words are hurtful and/or discouraging. We have mirrors, we know what we look like. We know the disease has aged us very rapidly. Some days I look in the mirror and it seems as if I aged a whole year overnight. Just yesterday, I was looking in the mirror and was thinking about the annual Association for FTD conference coming up in 4 weeks and 4 days. (Yes, I am counting that closely!) I had just come across a picture of me at the conference last year and I realized that I look ten years older. I am not digging for complements, it is reality. Kind of sad, but I have two choices. I could think that "Gee, I really look bad." or "I don't look too bad for someone dealing with a fatal illness!" Guess which one I choose!
There are better questions to ask someone dealing with a fatal disease. Many are just a word or two different than the bad examples: "You look good today" or simply "I am glad to see you." Instead of the stupid questions you could say "Are you having a good day today?" or a very sincere "Is there something I could do for you?" What I wouldn't give for someone to offer to wash my windows or pull some weeds. Sadly, I would most likely answer the offer to help with an emphatic "No!" simply because I am stubborn. don't want anyone to see my dirty house or to do yard work that I, myself, hate to do. Even though I would decline, I would really appreciate that someone cared enough to offer.
What would be better is if someone just showed up one day, armed with some gloves and supplies, and said that I should find someone to take me to lunch because they are going to do (insert helpful chore here). I would be embarrassed most likely, but how can you politely refuse? I am not writing this to make anyone feel guilty enough to do this and I hope no one take it that way. I am fortunate that between my husband and me, we do keep the house clean enough, laundry done and meals prepared. It is only the bigger projects that fall by the wayside.
My friend's husband was just telling me this morning that both lights in his kitchen burned out last week, so he had to climb the ladder and change the bulbs. It scared the bejeebers out of me as he should not be on a ladder. I asked if there wasn't someone they could call to do that. He hem-hawed around, my friend said yes there is but he won't ask. I pictured him trying to get up the ladder while leaning on his cane and started giggling. I told him "You are such a man!" He admitted that asking for help would have made him feel useless. Useless? He spends several days a week driving her to treatments and/or doctor visits, does the cooking,plus keeps up with as much around the house as he is able. They are a tad smarter than I am because they do have someone come in to clean their home and have someone to do most of the yardwork.
In the meantime, she and I compare notes on how compensate in order to do things and what things we can still do to make us feel useful and our brains stimulated. She and I keep each other going and when one of us is feeling down, the other can usually brighten our spirits.
If you reread the first paragraph, it could also make a good argument for our country to allow assisted suicide. When faced with a fatal or debilitating illness, the time does often come when you know it is time to end your own suffering. That, however, is an extremely controversial subject and I do not care to get into the debate in this forum.
On a final note, I am reading a book, "What If It's Not Alzheimer's? A Caregiver's Guide to Dementia, Third Edition" and is very informational so far. It will take me quite a while to read it since any new information takes a long time for my brain to process. I have heard a lot of good comments about it. I have only read the first chapter and already have a better understanding of the brain. I'll keep you posted.
Sunday, March 26, 2017
FTD = Frustrating Terminal Disease
I do not understand my brain at all. This past week, I learned how to video chat and participated in two successful Zoom video chats. Now I might even join my support group's weekly chats. Of course I will have to get up early, do my hair and makeup and put on something pretty... nothing vain about me!
I would be really happy about learning something new, except that this past week I also started struggling with the TV remote control and some things on the computer. My brain retains useless knowledge, yet it can't retain how to use the remote? But then again, by next week I may not be able to remember how to do the Zoom chats either. Have I said lately how much I hate this disease?
I can stand at the stove and create a really delicious meal, but I can't figure out how to set the timer on the microwave to know when the meal is ready to come out of the oven. I think I have explained before that since FTD, I have been able to create really great meals, but I do it by taste. I cannot follow recipes much at all.
Now, I wonder if my brain compensated somehow or made a new pathway so that I could create the food by taste. Was it that, or is it just that since I am no longer able to work and am home most of the time, that I do it well now simply because I have the time? It does get a little frustrating when I am thinking of what to cook and I think "Oooh, that chicken I made last week was awesome, maybe I could make that again. Oops, I wonder what I put in it or what it tasted like?"
I guess I shouldn't be too hard on myself for not figuring it out. If anyone could, we might have a cure or treatment by now.
Another thing that has boggled my mind for quite a while is why do they continue to prescribe the drugs that delay the progression of Alzheimer's Disease for those with FTD when they know that they do not work for FTD? Where I live is not exactly a hub of medical research, far from it, but we do have some good physicians. It upset me tremendously when my husband told me that, a few months ago at a local caregivers' conference, the preeminent psychiatrist in this area spoke to them. He actually stood there and said "We know the Alzheimer's drugs don't work for FTD, but we use them anyway."
I know I mentioned that in a blog back when it occurred, but there is a reason I am repeating the story. Today, I was chatting online with someone who is a care partner with someone with FTD. The person with FTD was prescribed the Alzheimer's medications and they really hated the side effects and did not feel they were doing any good. They did some research, found out they were contra-indicated for FTD and demanded that they be discontinued. After stopping, there was no progression of symptoms and they were saving a whole lot of money.
I know for myself, when I was still on the Alzheimer's drugs, I would go into the Medicare "donut hole" in just three months each year, meaning we paid out-of-pocket for all my meds the remainder of the year. Fortunately, there are now generics so that, while they are still expensive, it is a little better. I was wondering out loud (or rather typing out loud if that is possible) why they insist on continuing to prescribe the drugs. The woman I was conversing with said something like "Because the doctors are pressured so much by the pharmaceutical companies." Now that was an interesting thought and a quite upsetting one if there is any truth to it.
If I had to guess, I would lean toward thinking that yes, it could be true in many cases. I hope, though, that the rest of the cases are because, first of all, so many doctors have no clue about anything related to FTD. They think "dementia" and think if the drugs work for one disease that causes dementia, it must work for all of them. The other scenario I thought of was that the strong desire they have to help their patients might just lead them to trying the drugs because there are no alternatives and they are truly hoping that the drugs just might work.
Bottom line is that life with FTD is frustrating. We never know when we will lose the ability to do something we always did without thinking. That includes everything from the remote control to the ability to walk properly. A thought just occurred to me: FTD = Frustrating Terminal Disease. That says it all.
I would be really happy about learning something new, except that this past week I also started struggling with the TV remote control and some things on the computer. My brain retains useless knowledge, yet it can't retain how to use the remote? But then again, by next week I may not be able to remember how to do the Zoom chats either. Have I said lately how much I hate this disease?
I can stand at the stove and create a really delicious meal, but I can't figure out how to set the timer on the microwave to know when the meal is ready to come out of the oven. I think I have explained before that since FTD, I have been able to create really great meals, but I do it by taste. I cannot follow recipes much at all.
Now, I wonder if my brain compensated somehow or made a new pathway so that I could create the food by taste. Was it that, or is it just that since I am no longer able to work and am home most of the time, that I do it well now simply because I have the time? It does get a little frustrating when I am thinking of what to cook and I think "Oooh, that chicken I made last week was awesome, maybe I could make that again. Oops, I wonder what I put in it or what it tasted like?"
I guess I shouldn't be too hard on myself for not figuring it out. If anyone could, we might have a cure or treatment by now.
Another thing that has boggled my mind for quite a while is why do they continue to prescribe the drugs that delay the progression of Alzheimer's Disease for those with FTD when they know that they do not work for FTD? Where I live is not exactly a hub of medical research, far from it, but we do have some good physicians. It upset me tremendously when my husband told me that, a few months ago at a local caregivers' conference, the preeminent psychiatrist in this area spoke to them. He actually stood there and said "We know the Alzheimer's drugs don't work for FTD, but we use them anyway."
I know I mentioned that in a blog back when it occurred, but there is a reason I am repeating the story. Today, I was chatting online with someone who is a care partner with someone with FTD. The person with FTD was prescribed the Alzheimer's medications and they really hated the side effects and did not feel they were doing any good. They did some research, found out they were contra-indicated for FTD and demanded that they be discontinued. After stopping, there was no progression of symptoms and they were saving a whole lot of money.
I know for myself, when I was still on the Alzheimer's drugs, I would go into the Medicare "donut hole" in just three months each year, meaning we paid out-of-pocket for all my meds the remainder of the year. Fortunately, there are now generics so that, while they are still expensive, it is a little better. I was wondering out loud (or rather typing out loud if that is possible) why they insist on continuing to prescribe the drugs. The woman I was conversing with said something like "Because the doctors are pressured so much by the pharmaceutical companies." Now that was an interesting thought and a quite upsetting one if there is any truth to it.
If I had to guess, I would lean toward thinking that yes, it could be true in many cases. I hope, though, that the rest of the cases are because, first of all, so many doctors have no clue about anything related to FTD. They think "dementia" and think if the drugs work for one disease that causes dementia, it must work for all of them. The other scenario I thought of was that the strong desire they have to help their patients might just lead them to trying the drugs because there are no alternatives and they are truly hoping that the drugs just might work.
Bottom line is that life with FTD is frustrating. We never know when we will lose the ability to do something we always did without thinking. That includes everything from the remote control to the ability to walk properly. A thought just occurred to me: FTD = Frustrating Terminal Disease. That says it all.
Sunday, March 19, 2017
Finding Some of the Old Me
https://www.theaftd.org/wp-content/uploads/2016/12/CindyODell-CopingWithFTD-Dec2016.pdf
This link is to the booklet that I have mentioned before. Late last year, I actually had the entire document as a blog entry. I keep getting comments from people who say it has helped them which thrills me that I can contribute in some way. Because of that, I decided I would include the link to the document the way it was published by the AFTD. It is merely common sense approaches to the myriad of problems FTD brings to us. I have been both caregiver and, now, one with FTD myself. It gives me two ways to view things. If you haven't already seen it, please check it out to see if it can help you at all.
This week, I joined the 21st century. I now have an e tablet. It is pretty amazing and does a whole lot more than my old Nook does. The only problem, now that I own it, is trying to figure out how it works. I just finished downloading the owner's guide from the company's website. 78 pages!!! No wonder I could not instantly figure it out.
I bought my tablet from a young woman I have become to consider a friend. She is an example of how some of my empathy came through even though it had been missing to a huge extent since early in my disease process. I still don't have the compassion that I used to have and I don't cry at much. Many of us with FTD are reluctant to attend funerals because we know that we might slip out of the proper demeanor. Not only would we not appear sympathetic or empathetic, but it is in the realm of possibility that we could break out in laughter.
Back to my friend. She has had way too many bad times in her life for such a young woman. When I first met her and her husband at the time, I immediately sensed an abusive relationship. Fortunately, she realized she did not deserve being treated that way and she broke free. She now has a new husband and seems much happier. That, in turn, makes me happy as well. The two of them, along with their two children, delivered the tablet to me Friday evening. Our husbands started talking cars, so we had lots of time to catch up and I was able to get to know the kids. I mention her personal story, not just because I admire her for getting out of an abusive relationship, but because it was my empathy toward her that has drawn us together and allowed us to keep up a relationship for a year and a half. Hopefully that will continue for a long time.
We sat and talked, her two children talked and bounced around the room as kids do. Usually, that much activity would have caused me to freak out and either start screaming or run away. I believe my empathy toward her was so strong that I could handle the commotion. I have, before FTD, tried to help abused women in any way I could. It was our common abuse experiences that drew us together.
I am thrilled that my lack of empathy still allowed for us to keep in touch and to get to know each other better. It is heart warming to know that while I tend, since FTD, to be cold and uncaring, enough of the old me still exists in my brain and can find its way past that empathy barrier. No, I am not suggesting that the disease has reversed itself. I know that there is still not much hope for it in my lifetime. It is simply that I am overjoyed that there are still bits of the "real me" with me.
While I was struggling with figuring out this tablet all day yesterday, I realized that if I had asked her 9-year-old son to help, he would have had it whipped into shape in a matter of minutes. Meanwhile, I just printed out a 73-page owner's guide. I hope I can report next week that I figure some of it out. Otherwise, when I see my daughter in May, I will have to beg her to help.
Now, for an update. The Association for FTD conducts a fundraiser during February, its "With Love" campaign. When I read about it in their newsletter, I thought "Hey, I can do this!" because they do all the work, I just needed to contact people. I set my goal at raising $4000 and thanks to the generosity of my family and friends, we did it! Even better, the entire campaign met its entire goal and raised the most money yet. So, to those of my friends and family who read this, I say a huge "THANK YOU!" If I offended any of you with my begging and pleading, I am sorry. But, guess what, you'll hear the same begging and pleading next year! Thanks again!
This link is to the booklet that I have mentioned before. Late last year, I actually had the entire document as a blog entry. I keep getting comments from people who say it has helped them which thrills me that I can contribute in some way. Because of that, I decided I would include the link to the document the way it was published by the AFTD. It is merely common sense approaches to the myriad of problems FTD brings to us. I have been both caregiver and, now, one with FTD myself. It gives me two ways to view things. If you haven't already seen it, please check it out to see if it can help you at all.
This week, I joined the 21st century. I now have an e tablet. It is pretty amazing and does a whole lot more than my old Nook does. The only problem, now that I own it, is trying to figure out how it works. I just finished downloading the owner's guide from the company's website. 78 pages!!! No wonder I could not instantly figure it out.
I bought my tablet from a young woman I have become to consider a friend. She is an example of how some of my empathy came through even though it had been missing to a huge extent since early in my disease process. I still don't have the compassion that I used to have and I don't cry at much. Many of us with FTD are reluctant to attend funerals because we know that we might slip out of the proper demeanor. Not only would we not appear sympathetic or empathetic, but it is in the realm of possibility that we could break out in laughter.
Back to my friend. She has had way too many bad times in her life for such a young woman. When I first met her and her husband at the time, I immediately sensed an abusive relationship. Fortunately, she realized she did not deserve being treated that way and she broke free. She now has a new husband and seems much happier. That, in turn, makes me happy as well. The two of them, along with their two children, delivered the tablet to me Friday evening. Our husbands started talking cars, so we had lots of time to catch up and I was able to get to know the kids. I mention her personal story, not just because I admire her for getting out of an abusive relationship, but because it was my empathy toward her that has drawn us together and allowed us to keep up a relationship for a year and a half. Hopefully that will continue for a long time.
We sat and talked, her two children talked and bounced around the room as kids do. Usually, that much activity would have caused me to freak out and either start screaming or run away. I believe my empathy toward her was so strong that I could handle the commotion. I have, before FTD, tried to help abused women in any way I could. It was our common abuse experiences that drew us together.
I am thrilled that my lack of empathy still allowed for us to keep in touch and to get to know each other better. It is heart warming to know that while I tend, since FTD, to be cold and uncaring, enough of the old me still exists in my brain and can find its way past that empathy barrier. No, I am not suggesting that the disease has reversed itself. I know that there is still not much hope for it in my lifetime. It is simply that I am overjoyed that there are still bits of the "real me" with me.
While I was struggling with figuring out this tablet all day yesterday, I realized that if I had asked her 9-year-old son to help, he would have had it whipped into shape in a matter of minutes. Meanwhile, I just printed out a 73-page owner's guide. I hope I can report next week that I figure some of it out. Otherwise, when I see my daughter in May, I will have to beg her to help.
Now, for an update. The Association for FTD conducts a fundraiser during February, its "With Love" campaign. When I read about it in their newsletter, I thought "Hey, I can do this!" because they do all the work, I just needed to contact people. I set my goal at raising $4000 and thanks to the generosity of my family and friends, we did it! Even better, the entire campaign met its entire goal and raised the most money yet. So, to those of my friends and family who read this, I say a huge "THANK YOU!" If I offended any of you with my begging and pleading, I am sorry. But, guess what, you'll hear the same begging and pleading next year! Thanks again!
Sunday, March 12, 2017
Caregivers Rock (Most of the Time)
I admire every caregiver out there, especially those who are care partners to those with dementia. Of course I most closely relate to those dealing with FTD. I have been in their shoes. I have been in the caregiver role with family members who had FTD before me. Don't ask me which is more difficult. They are both horrible in their own ways.
My husband is my full-time caregiver. My daughter is my rock and keeps me sane. She knows me so well and is able to keep me on an even keel. She does not live with us and I think that is what makes her such a good care partner. We talk at length almost every day. We have done that since she first moved out of state somewhere around ten years ago. The interesting part of this is that when she first moved, it was me needing to stay in touch to make sure she was okay. Now, it is pretty much the opposite. She calls me to make sure that I am okay.
Because she does not see me, in person, more than a few times a year, she is the one that picks up on the differences in me from the prior visits. My husband, who see me constantly, does not always observe the changes because they can develop slowly. She is the one who will tell me when it is time to see the doctor. She and I have an awesome mother/daughter relationship, always have, always will. She is the one who calms me down when I am upset with my FTD symptoms, limitations and frustrations.
She is the one who can translate things between my husband and me. He and I do not always understand each other or speak the same language. He also is not quick to pick up when there are new things I need him to do for me. Of course, I am stubborn enough that I forget to ask him to do these things. She can be blunt and in my face about what I need to do and that I need to allow others to help me. I love this kid and could not survive this FTD journey without her!
Wow! I started this blog entry to talk about caregivers in general. I didn't see it leading into realizing how much I have come to depend on my daughter. It warms my heart that she is always there for me. It breaks my heart that our roles are needing to reverse.
What I started out wanting to talk about was sometimes needing to avoid caregivers. I visit an online support group for both caregivers and those with FTD. There are support groups for each of us alone but sometimes it is quite helpful for exchanges between both sides. When I read the concerns from the caregivers, it helps me realize what my husband is going through. Likewise, many times I am able to give caregivers an outlook from the other side. Having been on both sides, sometimes I am able to give a different prospective.
The bad part about frequenting the site that includes us both is that there is, naturally, a lot of complaining and venting by the caregivers. That is totally understandable and is a healthy thing for them to do. It is vital to be able to bounce things off others in the same boat and often times, it is only those people who can understand what you are going through. For someone with FTD, a lot of those things are downright difficult to hear. After hearing enough about situations involving people with FTD more advanced than my own, it can become quite depressing. To read things that makes it obvious how much the caregiver is resenting, sometimes almost hating, their loved one is heartbreaking. After enough, it leaves me feeling hopeless and depressed.
When this happens, I have to remind myself that I don't have to visit the site every day. I have had to avoid the joint site for as long as a month at a time. I am not blaming the caregivers. Like I said, they need outlets like this, just I rely so much on the online support group for only those with the disease that I visit most often. They have become my family and friends. I often refer to them as my lifeline. There are quite a few on the joint site that I feel I have a relationship with, but it can never be the same.
This week, I have reached that point that tells me to stay off the joint site for a while. When I start feeling like my life is hopeless and sometimes not worth living, I know this is what I need to do. Even though the caregivers come to feel the same way at times, it isn't the same. It seems to work the same way for the caregivers as they are often not receptive to the point of view from people with the disease. When you are not sleeping or having time or energy to live a life of your own, you don't want to hear why or what their loved one is feeling. Fortunately, they have closed support groups that are only for the caregivers as well.
I have, literally, forced my husband to join a local caregivers support group. It is not focused on FTD, but all dementias. Since so many of the frustrations are the same, it should help him. I have to keep reminding him, though, that the group is about him and his frustrations, not about me. It is a safe place where he can vent his feelings. Unfortunately, he is usually the only man attending. No surprise there, most men don't like to share feelings. A friend of ours goes to the monthly meetings with him so he won't feel so alone and she plans on doing this until he becomes comfortable with the group. I wish more men attended as I am sure the male perspective can be quite different.
It is tempting to ask my friend what he has talked about, but I resist. She wouldn't tell me anyway. Now, that is a good friend!
My husband is my full-time caregiver. My daughter is my rock and keeps me sane. She knows me so well and is able to keep me on an even keel. She does not live with us and I think that is what makes her such a good care partner. We talk at length almost every day. We have done that since she first moved out of state somewhere around ten years ago. The interesting part of this is that when she first moved, it was me needing to stay in touch to make sure she was okay. Now, it is pretty much the opposite. She calls me to make sure that I am okay.
Because she does not see me, in person, more than a few times a year, she is the one that picks up on the differences in me from the prior visits. My husband, who see me constantly, does not always observe the changes because they can develop slowly. She is the one who will tell me when it is time to see the doctor. She and I have an awesome mother/daughter relationship, always have, always will. She is the one who calms me down when I am upset with my FTD symptoms, limitations and frustrations.
She is the one who can translate things between my husband and me. He and I do not always understand each other or speak the same language. He also is not quick to pick up when there are new things I need him to do for me. Of course, I am stubborn enough that I forget to ask him to do these things. She can be blunt and in my face about what I need to do and that I need to allow others to help me. I love this kid and could not survive this FTD journey without her!
Wow! I started this blog entry to talk about caregivers in general. I didn't see it leading into realizing how much I have come to depend on my daughter. It warms my heart that she is always there for me. It breaks my heart that our roles are needing to reverse.
What I started out wanting to talk about was sometimes needing to avoid caregivers. I visit an online support group for both caregivers and those with FTD. There are support groups for each of us alone but sometimes it is quite helpful for exchanges between both sides. When I read the concerns from the caregivers, it helps me realize what my husband is going through. Likewise, many times I am able to give caregivers an outlook from the other side. Having been on both sides, sometimes I am able to give a different prospective.
The bad part about frequenting the site that includes us both is that there is, naturally, a lot of complaining and venting by the caregivers. That is totally understandable and is a healthy thing for them to do. It is vital to be able to bounce things off others in the same boat and often times, it is only those people who can understand what you are going through. For someone with FTD, a lot of those things are downright difficult to hear. After hearing enough about situations involving people with FTD more advanced than my own, it can become quite depressing. To read things that makes it obvious how much the caregiver is resenting, sometimes almost hating, their loved one is heartbreaking. After enough, it leaves me feeling hopeless and depressed.
When this happens, I have to remind myself that I don't have to visit the site every day. I have had to avoid the joint site for as long as a month at a time. I am not blaming the caregivers. Like I said, they need outlets like this, just I rely so much on the online support group for only those with the disease that I visit most often. They have become my family and friends. I often refer to them as my lifeline. There are quite a few on the joint site that I feel I have a relationship with, but it can never be the same.
This week, I have reached that point that tells me to stay off the joint site for a while. When I start feeling like my life is hopeless and sometimes not worth living, I know this is what I need to do. Even though the caregivers come to feel the same way at times, it isn't the same. It seems to work the same way for the caregivers as they are often not receptive to the point of view from people with the disease. When you are not sleeping or having time or energy to live a life of your own, you don't want to hear why or what their loved one is feeling. Fortunately, they have closed support groups that are only for the caregivers as well.
I have, literally, forced my husband to join a local caregivers support group. It is not focused on FTD, but all dementias. Since so many of the frustrations are the same, it should help him. I have to keep reminding him, though, that the group is about him and his frustrations, not about me. It is a safe place where he can vent his feelings. Unfortunately, he is usually the only man attending. No surprise there, most men don't like to share feelings. A friend of ours goes to the monthly meetings with him so he won't feel so alone and she plans on doing this until he becomes comfortable with the group. I wish more men attended as I am sure the male perspective can be quite different.
It is tempting to ask my friend what he has talked about, but I resist. She wouldn't tell me anyway. Now, that is a good friend!
Sunday, March 5, 2017
Brain Strain is a Pain
I swear there is a phenomena with FTD that causes all other illnesses to be worse. I doubt there is any scientific validity to this, but I have experienced it many times. I get a cold, it develops into bronchitis or pneumonia. I have a gout attack, it immobilizes me. I have a headache, it stays for days and feels like the worst migraine ever.
Wait, that last one is true. FTD headaches are the absolute worst and this comes from someone who has suffered from migraines her entire life. I have experienced gout pain for years as well. Those have always been controlled by diet and eating dried cherries which can act as an anti-inflammatory, so no problem. Since FTD, even though my diet is much healthier than it was while I was still employed, I get horrendous gout attacks. Attacks so bad that I had to use crutches and a wheelchair. By the way, I can also attest that it is difficult for someone with FTD to understand the workings of crutches.
The gout attacks have become frequent and increasingly severe. I also, months ago, experienced a kidney stone that, when analyzed, was caused by excess uric acid. After that really severe case of gout, I agreed to go on uric acid reducing medication. According to my lab reports, it has been effective. According to my foot, not so much.
My theory is fairly simple but is not founded on any medical evidence or research that I have read or heard. I believe that the stress of coping with FTD is an enormous burden on the human body as well as the brain. Because of this constant strain on the brain, I believe there is not enough energy left to fight off these irritating illnesses. The immune system is just over-taxed and can't keep up.
I have steps that I take to help my body deal with the reduced ability to fight things off. I get my vaccines for flu, shingles and pneumonia. I know there is a huge debate out there about the safety of those vaccines. For me, weighing the assistance to fight these diseases far outweighs the perceived risks of the disease. They stopped using live virus for flu vaccines years ago, so you cannot develop the flu from the vaccine. One word of extreme caution: This is not true of the NASAL vaccine. It IS made from live viruses and should never be taken by the elderly or those with compromised immune systems.
I avoid going out in crowds. I have learned when the grocery store is the least crowded and do my shopping during that time. I avoid movie theatres, malls and any place with large crowds of people. Unfortunately, this includes church as well. I have found that people think they must go to church, even if they are not feeling well. We go to restaurants during off-peak hours. You get the concept, I am sure.
I take echinacea and vitamin C (I use Ester-C, but there are many other brands.) every time I get home from a crowd, a doctor's office or from being exposed to anyone who displays any sign of possible illness. You sniffle in front of me, I take them both to boost my immune system. I am also one of those irritating shoppers who stands at the cart area of the store and clean my cart. Let me apologize here to all the people whose lives I have slowed by 30 seconds. I try to get out of the main traffic patterns, but sometimes you can't. Some times I apologize but, I admit it, most times I do not. I figure if someone gets that angry and upset from losing less than a minute out of their lives, they aren't going to appreciate my apology anyway.
I was prompted to write on this subject today because of something I am experiencing right now. For about 12 years now, I have had macular degeneration in my left eye. It was caused by an unusual disease, histoplasmosis, that in rare cases can spread to the eyes. (Yes, I do seem to be the queen of rare diseases.) Because of this, I have very little vision in my left eye. Yesterday, I realized I am showing the signs of macular degeneration in my remaining good eye. I was never very frightened when this happened in my left eye, probably because I still had one good eye remaining, but I am now!
Now that I am seeing symptoms of macular degeneration in my right eye, I am very frightened. Reading is a cherished enjoyment since FTD has stolen so many others. I have been extremely lucky to still be able to read and understand books. As I have explained many time before, the books cannot be complicated, but reading is still one of my favorite things to do. The thought of losing that ability is downright terrifying to me. There is also the fear of not being able to do much of anything. I also know my husband will dress me funny. This has been a standing family joke for years since he has no fashion sense at all.
To tie this into the beginning of this diatribe... Dealing with the stress and fear of the black spot in the middle of my vision is adding to the strain of FTD. Since discovering the problem, I am stumbling more, stuttering more and my thinking is much fuzzier than usual. It makes sense to me somehow. My brain is trying to deal with the stress and the fear from the eye issue which takes away from its ability to cope with my FTD symptoms.
I guess this all makes me think of that little childhood ditty of "The head bone's connected to the neck bone, neck bone's connected to the back bone.... them crazy bones." Let's start a new one, "The brain is connected to my worry bones, the brain is connected to my gouty bones, the brain is connected to my.... that crazy brain." Nah, doesn't have the same ring to it. I don't think it will catch on, but it does explain some things.
Wait, that last one is true. FTD headaches are the absolute worst and this comes from someone who has suffered from migraines her entire life. I have experienced gout pain for years as well. Those have always been controlled by diet and eating dried cherries which can act as an anti-inflammatory, so no problem. Since FTD, even though my diet is much healthier than it was while I was still employed, I get horrendous gout attacks. Attacks so bad that I had to use crutches and a wheelchair. By the way, I can also attest that it is difficult for someone with FTD to understand the workings of crutches.
The gout attacks have become frequent and increasingly severe. I also, months ago, experienced a kidney stone that, when analyzed, was caused by excess uric acid. After that really severe case of gout, I agreed to go on uric acid reducing medication. According to my lab reports, it has been effective. According to my foot, not so much.
My theory is fairly simple but is not founded on any medical evidence or research that I have read or heard. I believe that the stress of coping with FTD is an enormous burden on the human body as well as the brain. Because of this constant strain on the brain, I believe there is not enough energy left to fight off these irritating illnesses. The immune system is just over-taxed and can't keep up.
I have steps that I take to help my body deal with the reduced ability to fight things off. I get my vaccines for flu, shingles and pneumonia. I know there is a huge debate out there about the safety of those vaccines. For me, weighing the assistance to fight these diseases far outweighs the perceived risks of the disease. They stopped using live virus for flu vaccines years ago, so you cannot develop the flu from the vaccine. One word of extreme caution: This is not true of the NASAL vaccine. It IS made from live viruses and should never be taken by the elderly or those with compromised immune systems.
I avoid going out in crowds. I have learned when the grocery store is the least crowded and do my shopping during that time. I avoid movie theatres, malls and any place with large crowds of people. Unfortunately, this includes church as well. I have found that people think they must go to church, even if they are not feeling well. We go to restaurants during off-peak hours. You get the concept, I am sure.
I take echinacea and vitamin C (I use Ester-C, but there are many other brands.) every time I get home from a crowd, a doctor's office or from being exposed to anyone who displays any sign of possible illness. You sniffle in front of me, I take them both to boost my immune system. I am also one of those irritating shoppers who stands at the cart area of the store and clean my cart. Let me apologize here to all the people whose lives I have slowed by 30 seconds. I try to get out of the main traffic patterns, but sometimes you can't. Some times I apologize but, I admit it, most times I do not. I figure if someone gets that angry and upset from losing less than a minute out of their lives, they aren't going to appreciate my apology anyway.
I was prompted to write on this subject today because of something I am experiencing right now. For about 12 years now, I have had macular degeneration in my left eye. It was caused by an unusual disease, histoplasmosis, that in rare cases can spread to the eyes. (Yes, I do seem to be the queen of rare diseases.) Because of this, I have very little vision in my left eye. Yesterday, I realized I am showing the signs of macular degeneration in my remaining good eye. I was never very frightened when this happened in my left eye, probably because I still had one good eye remaining, but I am now!
Now that I am seeing symptoms of macular degeneration in my right eye, I am very frightened. Reading is a cherished enjoyment since FTD has stolen so many others. I have been extremely lucky to still be able to read and understand books. As I have explained many time before, the books cannot be complicated, but reading is still one of my favorite things to do. The thought of losing that ability is downright terrifying to me. There is also the fear of not being able to do much of anything. I also know my husband will dress me funny. This has been a standing family joke for years since he has no fashion sense at all.
To tie this into the beginning of this diatribe... Dealing with the stress and fear of the black spot in the middle of my vision is adding to the strain of FTD. Since discovering the problem, I am stumbling more, stuttering more and my thinking is much fuzzier than usual. It makes sense to me somehow. My brain is trying to deal with the stress and the fear from the eye issue which takes away from its ability to cope with my FTD symptoms.
I guess this all makes me think of that little childhood ditty of "The head bone's connected to the neck bone, neck bone's connected to the back bone.... them crazy bones." Let's start a new one, "The brain is connected to my worry bones, the brain is connected to my gouty bones, the brain is connected to my.... that crazy brain." Nah, doesn't have the same ring to it. I don't think it will catch on, but it does explain some things.
Sunday, February 26, 2017
Snowy Days and Sundays...
Forget the song about rainy days and Mondays. Today I am thinking snowy days and Sundays. But I refuse to let them get me down.
Today, once again, I witnessed a caregiver complaining about their family member craving sweets. She also said she makes sure there are no sweets in the house. I strongly disagree with this tactic. FTD brings so many frustrations and so much discomfort with it that I cannot see intentionally adding to it.
For most people, FTD brings along with it, an intense need for sweets and carbs. I say intense need, because it is beyond a craving in my opinion. You cannot control the desire and need for sweets without causing a lot of discomfort. One theory behind this is that we crave these high calorie foods, and pack on weight, because we will need the extra weight later on in the disease. Eh, maybe, I guess.
I have hung onto a piece of paper with this info on it for a few months. I apologize that I cannot give the source:
"Neuroscientists have shown, using fMRI to scan the brain‘s activity in real-time, that sugar leads to dopamine release in the nucleus accumbens – an area associated with motivation, novelty, and reward. This is the same brain region implicated in response to cocaine and heroin."
Perhaps this information explains why the craving is so extreme and craving sweets is a whole lot better than craving drugs. The sugar also gives an instant bit of energy. Those with FTD lose so much energy and long for the days, pre-FTD, when we actually had energy to do things. Also, we feel downright crappy quite often. If the sugar consumed does trigger motivation, enjoyment (novelty) and a feeling of pleasure (reward), it makes sense to me that this creates a feeling of need.
One thing I remember learning years ago is that hunger for food and hunger from sex come from the same area of the brain. We already realize that FTD often brings out an increased interest in sex. From these two facts, it is pretty easy to conclude that it is our brain that is screaming for the treats.
What I try to do, and have suggested often to others, is to try to make sure the sweets I am eating have at least a modicum of nutritional value. I love Quaker Dipps. They are granola type bars coated in chocolate and a couple of the flavors, caramel nut and peanut butter, taste like a good candy bar to me. I realize the nutritional value is small, but there are some oats in there and a tiny bit of nuts. A small amount is better than none. I try to eat dark chocolate when I am craving chocolate.
I also try to make my own snacks as often as I have a clear-headed day with a little extra energy. I make a few different kinds of cookies that are mostly ground oats. I have also had some success with sneaking in a little powdered dry milk without ruining the recipe results, the same with peanut butter or adding some nuts or dried fruit. I use natural peanut butter instead of the more processed kinds.
Many people use low fat yogurt as a sweet snack, but I am not a yogurt lover. I barely tolerate it. I do like cottage cheese with some canned fruit over it. Even some peanut butter and crackers will do it for me sometimes.
I try to make sure my sweets have some nutritional value. Other times, the need is so strong, I will eat anything to satisfy the need.
I strongly believe that the caregivers who think, by depriving the sweets and carbs, that they are helping and doing good for their loved one, are wrong. Being deprived of the sweets and carbs that we crave increases our frustration, irritability and stress. It takes away one of our last sources of pleasure. I think it comes close to cruel and unusual punishment.
One final point, one that is totally "in your face," FTD is going to kill us. We don't have much life expectancy left. The pleasures we still have in our lives are few. Why should we be denied one of the very few things that give us pleasure?
Okay, I am done with this rant. Time to go have a sweet carb or two, then settle in with a glass of wine and watch it snow!
Today, once again, I witnessed a caregiver complaining about their family member craving sweets. She also said she makes sure there are no sweets in the house. I strongly disagree with this tactic. FTD brings so many frustrations and so much discomfort with it that I cannot see intentionally adding to it.
For most people, FTD brings along with it, an intense need for sweets and carbs. I say intense need, because it is beyond a craving in my opinion. You cannot control the desire and need for sweets without causing a lot of discomfort. One theory behind this is that we crave these high calorie foods, and pack on weight, because we will need the extra weight later on in the disease. Eh, maybe, I guess.
I have hung onto a piece of paper with this info on it for a few months. I apologize that I cannot give the source:
"Neuroscientists have shown, using fMRI to scan the brain‘s activity in real-time, that sugar leads to dopamine release in the nucleus accumbens – an area associated with motivation, novelty, and reward. This is the same brain region implicated in response to cocaine and heroin."
Perhaps this information explains why the craving is so extreme and craving sweets is a whole lot better than craving drugs. The sugar also gives an instant bit of energy. Those with FTD lose so much energy and long for the days, pre-FTD, when we actually had energy to do things. Also, we feel downright crappy quite often. If the sugar consumed does trigger motivation, enjoyment (novelty) and a feeling of pleasure (reward), it makes sense to me that this creates a feeling of need.
One thing I remember learning years ago is that hunger for food and hunger from sex come from the same area of the brain. We already realize that FTD often brings out an increased interest in sex. From these two facts, it is pretty easy to conclude that it is our brain that is screaming for the treats.
What I try to do, and have suggested often to others, is to try to make sure the sweets I am eating have at least a modicum of nutritional value. I love Quaker Dipps. They are granola type bars coated in chocolate and a couple of the flavors, caramel nut and peanut butter, taste like a good candy bar to me. I realize the nutritional value is small, but there are some oats in there and a tiny bit of nuts. A small amount is better than none. I try to eat dark chocolate when I am craving chocolate.
I also try to make my own snacks as often as I have a clear-headed day with a little extra energy. I make a few different kinds of cookies that are mostly ground oats. I have also had some success with sneaking in a little powdered dry milk without ruining the recipe results, the same with peanut butter or adding some nuts or dried fruit. I use natural peanut butter instead of the more processed kinds.
Many people use low fat yogurt as a sweet snack, but I am not a yogurt lover. I barely tolerate it. I do like cottage cheese with some canned fruit over it. Even some peanut butter and crackers will do it for me sometimes.
I try to make sure my sweets have some nutritional value. Other times, the need is so strong, I will eat anything to satisfy the need.
I strongly believe that the caregivers who think, by depriving the sweets and carbs, that they are helping and doing good for their loved one, are wrong. Being deprived of the sweets and carbs that we crave increases our frustration, irritability and stress. It takes away one of our last sources of pleasure. I think it comes close to cruel and unusual punishment.
One final point, one that is totally "in your face," FTD is going to kill us. We don't have much life expectancy left. The pleasures we still have in our lives are few. Why should we be denied one of the very few things that give us pleasure?
Okay, I am done with this rant. Time to go have a sweet carb or two, then settle in with a glass of wine and watch it snow!
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