I have decided that FTD is a lonely disease. So few people understand it. Certainly, as I have said enough times already, that even the doctors don't understand it. Those who do are few and far between. That rules out talking to most doctors. Plus with today's state of medicine, the docs don't have time to sit and talk anymore.
Family and friends say they understand. They should as I have explained the disease often enough and handed them enough literature to paper a small room, maybe even a large room. I know they get tired of hearing me talk about it and the frustrations involved with it. They listen and agree and sympathize. Even though it may sound demanding and selfish, I want their empathy, not sympathy.
Family and friends understand the facts of the disease and the concept of the symptoms. They certainly understand how my having the disease affects them. This includes the things that they now have to do because I no longer can. For instance, we needed to purchase a new washer a few years ago and I still cannot figure out how to operate it properly. My husband now does the laundry. I kept the home running smoothly. When there were problems or issues that cropped up, I got on the phone and resolved them. I even did simple home repairs. I did the grocery shopping by rote, didn't need to think about it. I just grabbed the list and went. Now, the grocery store is my least favorite place to go with too much noise, confusion and too many choices. So they understand that either they need to do the grocery shopping or give me a day to go through the ad and make the list, then a different day to do the shopping. Of course, someone must go with me as well.
So they understand the disease and how it is affecting them, but they cannot really understand how it affects me. They think that when I start to fall apart, if they say something or hold my hand, I should immediately get "over it" and calm down. I only wish it was that easy. It is this gap in their understanding that makes me feel lonely, that no one understands me so why bother trying to talk about it.
There is an online support group for those of us with a diagnosis of FTD. It helps, we exchange information and beg for suggestions and understanding when we are having problems. Even there, though, there is only so much it can help. I can't post all my everyday frustrations. They would get tired of reading about my problems which seem trivial to so many other things being posted, even to me. While this support group is a tremendous help, it doesn't really help the everyday loneliness.
I see a wonderful and supportive psychologist who helps me immensely. She specializes in dementia cases, so she understands me pretty well. Talking to her helps with the big things I am trying to work through, but there is only so much talking we can do since I only get to see her for one hour per month.
I was prompted to write about this loneliness because for the past three days, I have constantly felt close to tears. It feels like if I could just have a good cry, I could get it out and feel better. Unfortunately FTD and I don't do well expressing emotions, including being able to cry. There are a couple stressful situations happening in my life right now that are most likely contributing to this feeling of needing to cry. They are not even close to being tragedies or threatening to my well being. When they combine with the everyday frustrations of dealing with FTD, however, I don't stand much of a chance of feeling normal.
I don't have any answers or suggestions for you today, except maybe to the caregivers, friends and family. Try to stop and think about how the things that your loved one is doing that have you frustrated and try to think how they must be feeling before you react. Perhaps take some time to sit with them later, during a quiet time, and ask them about any frustrations they are having and if there is anything you can do to help.
Thursday, March 31, 2016
Sunday, March 20, 2016
Routine please
Yesterday morning, while still lying in bed and convincing myself to get out of it, I heard a very loud bang. Even with FTD, I immediately knew what it was. A transformer had blown on the power pole a block away. This happens way too often, especially in the summer when the electric demand is high. Obviously, there is something wrong in the lines somewhere, but all they do is replace the parts on the pole and wait for it to happen again. What is the saying? Something like "Idiocy is doing the same thing over and over and expecting different results."
This time of year, it is not a horrible inconvenience to be without power for a few hours because it is not too cold outside and who won't accept a reason to not have to cook? I did all the right things. I turned up the ringer on the landline phone that does not need electricity... the one kids today would probably call an antique. I say it's not an antique unless you have to dial it! I put a note on the refrigerator so we wouldn't accidentally open it and let warm air in. I even dug out an LED light that runs on batteries so I could easily read the paper. The worst part was not being able to make a cup of coffee!
The power was back on after only three hours or so, no big deal. It was daylight and 50 degrees outside. Still, I felt out of sorts all the rest of the day. It felt like wanting to crawl out of my own skin, anxiety and restlessness and a general feeling that something was wrong. It eventually drove me to bed early, just to try to relax and decompress.
With FTD, I need a routine. I was quite spontaneous prior to FTD, but no longer. I need to go to bed and get up around the same time each day. I want my coffee and newspaper as soon as I get up. On and on the day goes... right on schedule. It is soothing to me. If I am forced out of my routine, I get anxious. I finally figured out late last night that the loss of electricity had been enough to throw me off my routine.
This morning, when I awoke, I thought "Great, I can have a calm day today." I even remembered it was Sunday. What day of the week has been difficult for a while and is getting more so. I got up, got dressed, made my cup of coffee and sat down with the Sunday newspaper. I soon discovered several sections were missing. I tried to convince myself it was no big deal but it didn't work. I have my routine of how I go through the paper and that routine was messed up. Maybe it wouldn't have affected me as much if it hadn't been the day after another disrupted day.
I often advise caregivers to try to keep a routine. Also, try to prevent sudden loud noises. Loud music or a loud television affects my comfort level. Flashing or bright lights will destroy my day, give me a headache and increase my anxiety. After either one of these, I need to go into a quiet and dark room to regroup. If a trip out of the house is necessary, I want to know at least the day before so I can mentally prepare myself. If my routine is thrown off, I will most likely get a bad headache and become very aggravated and irritable... very unpleasant to be around.
So, here I sit at the computer, taking lots of breaks and sitting with my head in my hands trying to figure out what I am doing or what I am supposed to be doing. I have a strong feeling that I have forgotten something important. I am jumping at unexpected noises which just adds to the anxiety level. I sure hope tomorrow goes according to plan!
This time of year, it is not a horrible inconvenience to be without power for a few hours because it is not too cold outside and who won't accept a reason to not have to cook? I did all the right things. I turned up the ringer on the landline phone that does not need electricity... the one kids today would probably call an antique. I say it's not an antique unless you have to dial it! I put a note on the refrigerator so we wouldn't accidentally open it and let warm air in. I even dug out an LED light that runs on batteries so I could easily read the paper. The worst part was not being able to make a cup of coffee!
The power was back on after only three hours or so, no big deal. It was daylight and 50 degrees outside. Still, I felt out of sorts all the rest of the day. It felt like wanting to crawl out of my own skin, anxiety and restlessness and a general feeling that something was wrong. It eventually drove me to bed early, just to try to relax and decompress.
With FTD, I need a routine. I was quite spontaneous prior to FTD, but no longer. I need to go to bed and get up around the same time each day. I want my coffee and newspaper as soon as I get up. On and on the day goes... right on schedule. It is soothing to me. If I am forced out of my routine, I get anxious. I finally figured out late last night that the loss of electricity had been enough to throw me off my routine.
This morning, when I awoke, I thought "Great, I can have a calm day today." I even remembered it was Sunday. What day of the week has been difficult for a while and is getting more so. I got up, got dressed, made my cup of coffee and sat down with the Sunday newspaper. I soon discovered several sections were missing. I tried to convince myself it was no big deal but it didn't work. I have my routine of how I go through the paper and that routine was messed up. Maybe it wouldn't have affected me as much if it hadn't been the day after another disrupted day.
I often advise caregivers to try to keep a routine. Also, try to prevent sudden loud noises. Loud music or a loud television affects my comfort level. Flashing or bright lights will destroy my day, give me a headache and increase my anxiety. After either one of these, I need to go into a quiet and dark room to regroup. If a trip out of the house is necessary, I want to know at least the day before so I can mentally prepare myself. If my routine is thrown off, I will most likely get a bad headache and become very aggravated and irritable... very unpleasant to be around.
So, here I sit at the computer, taking lots of breaks and sitting with my head in my hands trying to figure out what I am doing or what I am supposed to be doing. I have a strong feeling that I have forgotten something important. I am jumping at unexpected noises which just adds to the anxiety level. I sure hope tomorrow goes according to plan!
Sunday, March 6, 2016
Primary Progressive Aphasia... another type of FTD
Primary Progressive Aphasia (PPA). Have you ever heard of it? Until I started learning about FTD, I never had.
What is it? It is, basically, a progressive decline in the ability to speak. Today, I learned that it takes 100 different muscles, located between the lungs and lips, in order to speak. Speech therapy helps some people a bit and there are some experimental treatments out there being tested. One of which is sending electrical stimulation to the affected area of the brain that controls speech.
In the meantime, those with PPA can cope somewhat with speech devices. Those with just PPA can often still read and comprehend words and the meanings of them. They can manage their own lives, finances, etc. This enables many to be able to use speech assisting program and devices currently available. The majority requires the one with PPA to type in the words and the device will speak for them. Not a true substitute for speaking on their own, but at least a way of communicating.
Most often, PPA is considered to be under the umbrella of FTD. Just like FTD, it is not very well known. Unfortunately, even by physicians. Again, like FTD, PPA is often diagnosed as Early Onset Alzheimer's. Never mind that the one with PPA can understand the words, they just can't speak them, and they often do not have memory issues.
There is a young woman in the online support group that I frequent who has PPA. Reading between the lines in what she posts, makes me realize that I cannot begin to imagine the frustrations of dealing with the disease. She amazes me, the way she keeps a positive attitude. Sometimes the frustrations get the best of her, but she is still there to brighten someone else's day.
I am writing about PPA today because our local paper actually contained a story about the disease today. Of course, FTD was never mentioned, as usual. It did a pretty good job of describing PPA and the frustrations of dealing with it, along with hopes of some newer ways of coping with it that are in the works. They did a much better job of describing PPA than I have. Mine is more simplistic. In other words, broken down to the point that it makes sense to me.
I am very grateful that the newspaper printed the story so that I could get a better idea of what some of my online friends in our support group are dealing with every day.
It's been a while, if ever, that I have written about the exact form of FTD that I have been diagnosed with up to this point. The form that I have is bvFTD with MND. MND is Motor Neuron Disease. The closest way to describe this is that it is quite similar to ALS (Lou Gehrig's Disease). In fact, I have also seem some experts include ALS under the FTD umbrella since they are so similar. For me, it is like my muscles don't get the message from my brain. I will be walking and suddenly I trip, and often fall, because part of my brain is thinking that I am walking while at the same time, the signal from my brain to my muscles doesn't get there so my leg doesn't actually move. The most frustrating part, at the moment, is swallowing. The muscles necessary to cause me to swallow don't get the message. Both are worse when I am stressed or tired.
The bvFTD is Behavior Variant Fronto Temporal Lobe Dementia/Disease. That is where all the dangerous parts of FTD come in to play. Specifically, a lack of impulse control, loss of verbal filters, hyper-sexuality, outbursts of frustration and anger, impulse buying, repetitive activities and the list can go on and on. It becomes dangerous when I know I want to go across the road to get to our mailbox, but my brain doesn't remind me to look both ways. I almost got flattened by a coal truck one day.
My point I rambling toward is that if you know of someone diagnosed with FTD, then you meet someone else with the diagnosis, and you think it can't be because the symptoms of the two are totally different. Yep, it can be. The members of my support group like to say, "If you have seen one case of FTD, you have seen one case of FTD." No two are the same. Add in to that mix the fact that most medical personnel have never even heard of FTD, how likely is it that, with all the sub-types, this will be remedied very soon. That is why, any time I have the opportunity to talk about FTD to raise awareness, I do. I have also learned to go into any new doctor's office armed with literature to educate them about FTD. Some just look at it and toss it away, others seem sincerely interested and discuss it at the next visit. We need more doctors like that.
What is it? It is, basically, a progressive decline in the ability to speak. Today, I learned that it takes 100 different muscles, located between the lungs and lips, in order to speak. Speech therapy helps some people a bit and there are some experimental treatments out there being tested. One of which is sending electrical stimulation to the affected area of the brain that controls speech.
In the meantime, those with PPA can cope somewhat with speech devices. Those with just PPA can often still read and comprehend words and the meanings of them. They can manage their own lives, finances, etc. This enables many to be able to use speech assisting program and devices currently available. The majority requires the one with PPA to type in the words and the device will speak for them. Not a true substitute for speaking on their own, but at least a way of communicating.
Most often, PPA is considered to be under the umbrella of FTD. Just like FTD, it is not very well known. Unfortunately, even by physicians. Again, like FTD, PPA is often diagnosed as Early Onset Alzheimer's. Never mind that the one with PPA can understand the words, they just can't speak them, and they often do not have memory issues.
There is a young woman in the online support group that I frequent who has PPA. Reading between the lines in what she posts, makes me realize that I cannot begin to imagine the frustrations of dealing with the disease. She amazes me, the way she keeps a positive attitude. Sometimes the frustrations get the best of her, but she is still there to brighten someone else's day.
I am writing about PPA today because our local paper actually contained a story about the disease today. Of course, FTD was never mentioned, as usual. It did a pretty good job of describing PPA and the frustrations of dealing with it, along with hopes of some newer ways of coping with it that are in the works. They did a much better job of describing PPA than I have. Mine is more simplistic. In other words, broken down to the point that it makes sense to me.
I am very grateful that the newspaper printed the story so that I could get a better idea of what some of my online friends in our support group are dealing with every day.
It's been a while, if ever, that I have written about the exact form of FTD that I have been diagnosed with up to this point. The form that I have is bvFTD with MND. MND is Motor Neuron Disease. The closest way to describe this is that it is quite similar to ALS (Lou Gehrig's Disease). In fact, I have also seem some experts include ALS under the FTD umbrella since they are so similar. For me, it is like my muscles don't get the message from my brain. I will be walking and suddenly I trip, and often fall, because part of my brain is thinking that I am walking while at the same time, the signal from my brain to my muscles doesn't get there so my leg doesn't actually move. The most frustrating part, at the moment, is swallowing. The muscles necessary to cause me to swallow don't get the message. Both are worse when I am stressed or tired.
The bvFTD is Behavior Variant Fronto Temporal Lobe Dementia/Disease. That is where all the dangerous parts of FTD come in to play. Specifically, a lack of impulse control, loss of verbal filters, hyper-sexuality, outbursts of frustration and anger, impulse buying, repetitive activities and the list can go on and on. It becomes dangerous when I know I want to go across the road to get to our mailbox, but my brain doesn't remind me to look both ways. I almost got flattened by a coal truck one day.
My point I rambling toward is that if you know of someone diagnosed with FTD, then you meet someone else with the diagnosis, and you think it can't be because the symptoms of the two are totally different. Yep, it can be. The members of my support group like to say, "If you have seen one case of FTD, you have seen one case of FTD." No two are the same. Add in to that mix the fact that most medical personnel have never even heard of FTD, how likely is it that, with all the sub-types, this will be remedied very soon. That is why, any time I have the opportunity to talk about FTD to raise awareness, I do. I have also learned to go into any new doctor's office armed with literature to educate them about FTD. Some just look at it and toss it away, others seem sincerely interested and discuss it at the next visit. We need more doctors like that.
Sunday, February 28, 2016
Rambling On...
About the best thing I can say about this past week is that the week is over.
Today I am physically and mentally exhausted. Night before last, I actually had 8 hours of continuous sleep. I felt so good when I woke up yesterday that I did some cleaning that I had been putting off because it took a lot of energy and effort to do it. I exhausted myself, but my brain still felt more alert than usual. So, what did I do? I tackled our tax return. Bear in mind, I used to prepare tax returns as part of my occupation and our tax return is pretty darned simple now that we are both retired. Plus, the software I use remembers all the stuff from the year before, so all I really have to do is plug in a few numbers. Nothing at all was different this year, just the numbers. Uh-huh.
When I was working, we would allow one hour to do a return. With ours being so straight forward, it wouldn't have taken me that long. Yesterday, I spent more time than that just organizing the statements I needed. It was three categories and not very many in either category, 2, 2 and 4. Over an hour to sort 8 pages of paper! I am amazed that I actually got the return done at all. I am not very confident that it was done correctly and I suspect this might be the last year I can do it. I was, however, very happy that I was able to do it one more time.
And, I ramble on...
I am tired of offending people. I am tired of people taking offense at what I say or do, especially when it is a person who knows I have FTD and actually knows enough about the disease to realize that I have no filter between brain and mouth. Also known is the fact that I have no impulse control. The two pretty much go hand in hand and makes me a time bomb waiting to happen every time I open my mouth.
I recognize the fact that knowing these things is not the same as truly realizing what it means. I also recognize that some of the things that I spew forth can be hurtful. I also realize how much it hurts to be lashed out at about things I have said a long time ago and that are no longer in my memory bank. Perhaps if I am saying something hurtful, it would help to ask if it is me talking or my FTD talking. I suspect, though, after enough times of that, I would lose control. I don't think there is a solution to this problem.
I push myself to remember to control the impulses, but with no impulse control, it's hard to control them. Yes, I know how stupid that sounds, but I am trying to say that I just can't help it. Another problem is that what I say is not always what I am thinking about in my head.
I have begun to call this problem "word soup." The words are in there, but they are so mixed up that it is hard to distinguish the difference. I remember being embarrassed quite a few years ago, at an amusement park, when I went to ask a friend where the merry-go-round was. Instead I asked where the motorcycle was. Not much of a shock that all I got were blank stares. This instance was long enough ago, I do not really think it had anything to do with FTD, but who knows since they just don't know enough about this disease.
Often now, I will say something. Then after I have said it, I will think to myself that it just didn't sound right but I can't figure out what I said or even what I meant. It is getting scary since I know this will only get worse as time goes on.
I have learned to appreciate one of the worsening symptoms. I read on my Nook so that I can enlarge the print which reduces the problem of the double vision. I will go through the library of the books stored in the device and will see a book and think I didn't read it. I will read it again. There is this niggling feeling that I read it before, but I can't remember it. I have only been using my nook for 3 or 4 years, so I should be able to remember. I used to be able to talk about a book I had read more than 20 years ago. I guess the bright side would be that I can save money on buying books if I keep rereading the same ones.
I keep trying to see the bright side!
Today I am physically and mentally exhausted. Night before last, I actually had 8 hours of continuous sleep. I felt so good when I woke up yesterday that I did some cleaning that I had been putting off because it took a lot of energy and effort to do it. I exhausted myself, but my brain still felt more alert than usual. So, what did I do? I tackled our tax return. Bear in mind, I used to prepare tax returns as part of my occupation and our tax return is pretty darned simple now that we are both retired. Plus, the software I use remembers all the stuff from the year before, so all I really have to do is plug in a few numbers. Nothing at all was different this year, just the numbers. Uh-huh.
When I was working, we would allow one hour to do a return. With ours being so straight forward, it wouldn't have taken me that long. Yesterday, I spent more time than that just organizing the statements I needed. It was three categories and not very many in either category, 2, 2 and 4. Over an hour to sort 8 pages of paper! I am amazed that I actually got the return done at all. I am not very confident that it was done correctly and I suspect this might be the last year I can do it. I was, however, very happy that I was able to do it one more time.
And, I ramble on...
I am tired of offending people. I am tired of people taking offense at what I say or do, especially when it is a person who knows I have FTD and actually knows enough about the disease to realize that I have no filter between brain and mouth. Also known is the fact that I have no impulse control. The two pretty much go hand in hand and makes me a time bomb waiting to happen every time I open my mouth.
I recognize the fact that knowing these things is not the same as truly realizing what it means. I also recognize that some of the things that I spew forth can be hurtful. I also realize how much it hurts to be lashed out at about things I have said a long time ago and that are no longer in my memory bank. Perhaps if I am saying something hurtful, it would help to ask if it is me talking or my FTD talking. I suspect, though, after enough times of that, I would lose control. I don't think there is a solution to this problem.
I push myself to remember to control the impulses, but with no impulse control, it's hard to control them. Yes, I know how stupid that sounds, but I am trying to say that I just can't help it. Another problem is that what I say is not always what I am thinking about in my head.
I have begun to call this problem "word soup." The words are in there, but they are so mixed up that it is hard to distinguish the difference. I remember being embarrassed quite a few years ago, at an amusement park, when I went to ask a friend where the merry-go-round was. Instead I asked where the motorcycle was. Not much of a shock that all I got were blank stares. This instance was long enough ago, I do not really think it had anything to do with FTD, but who knows since they just don't know enough about this disease.
Often now, I will say something. Then after I have said it, I will think to myself that it just didn't sound right but I can't figure out what I said or even what I meant. It is getting scary since I know this will only get worse as time goes on.
I have learned to appreciate one of the worsening symptoms. I read on my Nook so that I can enlarge the print which reduces the problem of the double vision. I will go through the library of the books stored in the device and will see a book and think I didn't read it. I will read it again. There is this niggling feeling that I read it before, but I can't remember it. I have only been using my nook for 3 or 4 years, so I should be able to remember. I used to be able to talk about a book I had read more than 20 years ago. I guess the bright side would be that I can save money on buying books if I keep rereading the same ones.
I keep trying to see the bright side!
Sunday, February 21, 2016
Not As Easy As It Used to Be
It is impossible to inform people often enough about the AFTD www.theaftd.org.
The AFTD (The Association fpr Frontotemporal Degeneration) does a lot of things for those with FTD, those who care for someone with it, or those whom just want to know more about it. In short, their mission is Research, Awareness, Support, Education and Advocacy.
To me, this is the first "go to" place when you or a loved one receives the dreaded diagnosis. It is also the place to go if you are having difficulty dealing with the disease.
One of the things the AFTD does is to organize and host an annual Education Conference. It is open to medical professionals, those who have FTD and their caretakers. You can read more about it by clicking on the link in the first paragraph.
This year, the conference is going to be held in Minneapolis, not close enough for a road trip, but only a 2-hour flight. Last year's flight to San Diego scared me too much to attempt. This year, though, I am going! My sister has agreed to accompany me, not only to keep me safe, but also to learn more about the disease. My husband, who refuses to fly anymore, gladly agreed to fund our trip. As much as I would like him to attend the conference, I am also sure that my sister will learn more than he would.
Even though it almost three months away, I am already getting excited. Many of the members of the online support group I visit daily will be there and I will be able to meet them, finally, in person. To meet them, as well as all the other people attending who have been diagnosed with FTD, is worth the trip in itself. Priceless, though, will be learning more about FTD and how to cope with it. I believe you can learn more from those who have FTD than any literature available. If they don't know it, they usually know when to direct you to find out. Of course, this is probably going to be the AFTD.
I am so excited that I insisted on making all the arrangements now! My husband left it to me to do rather than doing it for me because he felt certain I could handle it. He also knew that even if I didn't ask for help, he would know if I did, by how frustrated and angry I was acting.
A simple trip like this, back before FTD, I would arrange in an hour or so. Not anymore. This is my third day of dealing with it. I am proud of myself by the way I handled it. I spent the first day (when I say day, I'm talking about the 4-hour time span in the afternoon when I am more aware and with clearer thinking.) I did the actual online registration for the conference. So far, I only know of one mistake I made, but I am confident the AFTD will help me work through that. I also did some research on flights. We will have to take two flights each way... a local commuter jet that will get us to a major airport, then the flight to Minneapolis. I got as far as printing out lists of possible flights before my brain balked at doing anything more. Second day, I got back into the flights and actually made the reservations. I think I got everything right. I hope we don't get to the airport and find out we have to buy new tickets because I screwed something up! I was confident enough, that I went ahead and made the hotel reservation as well.
Today, the third day of preparation, I organized all my paperwork into a clear and workable order. I also contacted the hotel, via email, for information on getting from the airport to the hotel and back. I didn't want for us to have to rent a car and try to find our way around a new city. I would have been freaking out, and my poor sister would be trying to figure out the directions plus deal with me. Turns out there are plenty of shops and restaurants right across the road and the hotel shuttle van will transport us. Turns out that they do not offer a shuttle to/from the airport, but he gave me information on a private shuttle company that they recommend. I think I am going to go that way since it is half the cost of taking a cab.
Three days to do what I would have done in one hour... three days!!! Makes me feel a little pathetic, but much stronger is the feeling of pride I have from doing it! This should give you one idea of how FTD affects one's life.
Now all I have to worry about is if my luggage is too big or too heavy and what we can and cannot pack. Actually, I know at least my luggage is too big but don't know about my sister's. Then I need to figure out whether to buy a new bag or pay the fees to use one of the ones I have. Are you suspecting yet that I will obsessing for the next three months? Wish us all luck... me and both my caregivers, my sister and my husband. They will get sick and tired of hearing about it, I am sure!
The AFTD (The Association fpr Frontotemporal Degeneration) does a lot of things for those with FTD, those who care for someone with it, or those whom just want to know more about it. In short, their mission is Research, Awareness, Support, Education and Advocacy.
To me, this is the first "go to" place when you or a loved one receives the dreaded diagnosis. It is also the place to go if you are having difficulty dealing with the disease.
One of the things the AFTD does is to organize and host an annual Education Conference. It is open to medical professionals, those who have FTD and their caretakers. You can read more about it by clicking on the link in the first paragraph.
This year, the conference is going to be held in Minneapolis, not close enough for a road trip, but only a 2-hour flight. Last year's flight to San Diego scared me too much to attempt. This year, though, I am going! My sister has agreed to accompany me, not only to keep me safe, but also to learn more about the disease. My husband, who refuses to fly anymore, gladly agreed to fund our trip. As much as I would like him to attend the conference, I am also sure that my sister will learn more than he would.
Even though it almost three months away, I am already getting excited. Many of the members of the online support group I visit daily will be there and I will be able to meet them, finally, in person. To meet them, as well as all the other people attending who have been diagnosed with FTD, is worth the trip in itself. Priceless, though, will be learning more about FTD and how to cope with it. I believe you can learn more from those who have FTD than any literature available. If they don't know it, they usually know when to direct you to find out. Of course, this is probably going to be the AFTD.
I am so excited that I insisted on making all the arrangements now! My husband left it to me to do rather than doing it for me because he felt certain I could handle it. He also knew that even if I didn't ask for help, he would know if I did, by how frustrated and angry I was acting.
A simple trip like this, back before FTD, I would arrange in an hour or so. Not anymore. This is my third day of dealing with it. I am proud of myself by the way I handled it. I spent the first day (when I say day, I'm talking about the 4-hour time span in the afternoon when I am more aware and with clearer thinking.) I did the actual online registration for the conference. So far, I only know of one mistake I made, but I am confident the AFTD will help me work through that. I also did some research on flights. We will have to take two flights each way... a local commuter jet that will get us to a major airport, then the flight to Minneapolis. I got as far as printing out lists of possible flights before my brain balked at doing anything more. Second day, I got back into the flights and actually made the reservations. I think I got everything right. I hope we don't get to the airport and find out we have to buy new tickets because I screwed something up! I was confident enough, that I went ahead and made the hotel reservation as well.
Today, the third day of preparation, I organized all my paperwork into a clear and workable order. I also contacted the hotel, via email, for information on getting from the airport to the hotel and back. I didn't want for us to have to rent a car and try to find our way around a new city. I would have been freaking out, and my poor sister would be trying to figure out the directions plus deal with me. Turns out there are plenty of shops and restaurants right across the road and the hotel shuttle van will transport us. Turns out that they do not offer a shuttle to/from the airport, but he gave me information on a private shuttle company that they recommend. I think I am going to go that way since it is half the cost of taking a cab.
Three days to do what I would have done in one hour... three days!!! Makes me feel a little pathetic, but much stronger is the feeling of pride I have from doing it! This should give you one idea of how FTD affects one's life.
Now all I have to worry about is if my luggage is too big or too heavy and what we can and cannot pack. Actually, I know at least my luggage is too big but don't know about my sister's. Then I need to figure out whether to buy a new bag or pay the fees to use one of the ones I have. Are you suspecting yet that I will obsessing for the next three months? Wish us all luck... me and both my caregivers, my sister and my husband. They will get sick and tired of hearing about it, I am sure!
Sunday, February 14, 2016
Love, (Sweet?) Love
First of all, today is Valentine's Day, so I wish all who read this a very happy Valentine's Day. If you are reading this after today, then I truly hope it was a happy day for you.
Love... another of those topics that are difficult to talk about. I have mentioned it a few times here and there in other blog entries, but never dedicated an entire one to the subject.
There are so many different types of love... love for your spouse or sweetheart, love for your children, love for your friends and it goes on and on. What ruins any of those types of love? A spouse or sweetheart cheating or abusing, friends who repeatedly let you down when you need them or when they take advantage of you. Children? I am not sure the love for your child ever goes away. You may be extremely angry with them, disappointed by something they do or don't do, frustrated when they stray from the morals that you thought you had taught them... but love remains.
I will take a moment to brag a little. I have been married to the same wonderful man for 42 years now. I have a 35 year old daughter who is still the light of my life. Even when I go for six months, or even a year, without physically seeing her, that is a love that never dims. I have quite a few other family members with whom I feel a close relationship. Ones whom I know I can rely on. I am very lucky in the love department. I used to have a lot of close friends to count on and enjoy doing things together, but then FTD came along!
Ah, yes, wonderful FTD. Most of the time, the primary caregiver for those with FTD, as well as most other dementias, is the spouse or child. In most cases, it totally changes the relationship between the one with FTD and the caregiver/s. Take the spouse for instance. The two have walked side by side for years or decades. You have shared in all things pretty equally, gone through good times and bad times, relying on each other all along the way. Then, you start seeing strange things happening to your spouse, things that can't be explained away.
Quite often, in the early stages of FTD, some of the first signs are changes in personality. We lose our "filters" between brain and mouth. If we think it, we say it and, more often than not, see nothing wrong with what we said. We often become downright nasty, some become mean and abusive. At least in my case, I attribute a lot of my nastiness to the daily frustrations caused by FTD. Since the memory stays intact until later stages, I can remember all the things I used to be able to do that I can no longer do or at least not as well. How could this not be a strain on a spousal relationship? I find myself apologizing a lot. My husband and I work at it, talk about it and still take some time each day for hugs and comfort.
Speaking with caretakers, though, I have come to realize it becomes more and more difficult. As the spouse with FTD loses more and more abilities, the caregiver must take over. Things that used to be shared... finances, shopping, housework, sometimes child rearing, and so much more must now be done by the caretaking spouse. Odds are that the one with FTD can no longer work, so income becomes an issue. Sometimes they have to give up the home they have worked so hard to get, because they can no longer afford it. Then comes the stage when there are bathroom accidents to be cleaned up several times a day, as well as when self-feeding is no longer possible. How long can you maintain that love? The love definitely changes. I think the love is still there, or else you couldn't do all those things, but it is certainly not the intimate kind of love you had for so long.
A child being the primary caregiver, to me, just seems wrong. There are just somethings that a child should not have to do for a parent. I was a caregiver for a few family members with dementia, including my mother. It was heartbreaking, not only for me, but also for my mother. She didn't have much memory left, but when I was helping her shower, she knew this wasn't the way it was supposed to be. Once of the saddest moments of my life was the day I realized my mom had forgotten how to walk. Sometimes, though, it is only the child who is available to be the caretaker.
What I am trying to get across is that taking care of someone with dementia is not easy. It is an extremely difficult, frustrating and sometimes agonizing thing to have to do. My mother, after caring for her own mother with dementia in her home, made me promise that I would never, never, never move her into my home. While crying, she begged this of me and explained that she didn't want me to end up hating her. She obviously struggled with this while caring for her mom. Sad, isn't it?
Why am I going on and on about this, especially on Valentine's Day, a day devoted to love? I cannot imagine any act more full of love than being a caretaker for someone with dementia. To put up with the worries, the financial burden, the almost total loss of any "me" time? Now, that is love personified. That is why I constantly say, "GOD BLESS THE CAREGIVERS!"
Love... another of those topics that are difficult to talk about. I have mentioned it a few times here and there in other blog entries, but never dedicated an entire one to the subject.
There are so many different types of love... love for your spouse or sweetheart, love for your children, love for your friends and it goes on and on. What ruins any of those types of love? A spouse or sweetheart cheating or abusing, friends who repeatedly let you down when you need them or when they take advantage of you. Children? I am not sure the love for your child ever goes away. You may be extremely angry with them, disappointed by something they do or don't do, frustrated when they stray from the morals that you thought you had taught them... but love remains.
I will take a moment to brag a little. I have been married to the same wonderful man for 42 years now. I have a 35 year old daughter who is still the light of my life. Even when I go for six months, or even a year, without physically seeing her, that is a love that never dims. I have quite a few other family members with whom I feel a close relationship. Ones whom I know I can rely on. I am very lucky in the love department. I used to have a lot of close friends to count on and enjoy doing things together, but then FTD came along!
Ah, yes, wonderful FTD. Most of the time, the primary caregiver for those with FTD, as well as most other dementias, is the spouse or child. In most cases, it totally changes the relationship between the one with FTD and the caregiver/s. Take the spouse for instance. The two have walked side by side for years or decades. You have shared in all things pretty equally, gone through good times and bad times, relying on each other all along the way. Then, you start seeing strange things happening to your spouse, things that can't be explained away.
Quite often, in the early stages of FTD, some of the first signs are changes in personality. We lose our "filters" between brain and mouth. If we think it, we say it and, more often than not, see nothing wrong with what we said. We often become downright nasty, some become mean and abusive. At least in my case, I attribute a lot of my nastiness to the daily frustrations caused by FTD. Since the memory stays intact until later stages, I can remember all the things I used to be able to do that I can no longer do or at least not as well. How could this not be a strain on a spousal relationship? I find myself apologizing a lot. My husband and I work at it, talk about it and still take some time each day for hugs and comfort.
Speaking with caretakers, though, I have come to realize it becomes more and more difficult. As the spouse with FTD loses more and more abilities, the caregiver must take over. Things that used to be shared... finances, shopping, housework, sometimes child rearing, and so much more must now be done by the caretaking spouse. Odds are that the one with FTD can no longer work, so income becomes an issue. Sometimes they have to give up the home they have worked so hard to get, because they can no longer afford it. Then comes the stage when there are bathroom accidents to be cleaned up several times a day, as well as when self-feeding is no longer possible. How long can you maintain that love? The love definitely changes. I think the love is still there, or else you couldn't do all those things, but it is certainly not the intimate kind of love you had for so long.
A child being the primary caregiver, to me, just seems wrong. There are just somethings that a child should not have to do for a parent. I was a caregiver for a few family members with dementia, including my mother. It was heartbreaking, not only for me, but also for my mother. She didn't have much memory left, but when I was helping her shower, she knew this wasn't the way it was supposed to be. Once of the saddest moments of my life was the day I realized my mom had forgotten how to walk. Sometimes, though, it is only the child who is available to be the caretaker.
What I am trying to get across is that taking care of someone with dementia is not easy. It is an extremely difficult, frustrating and sometimes agonizing thing to have to do. My mother, after caring for her own mother with dementia in her home, made me promise that I would never, never, never move her into my home. While crying, she begged this of me and explained that she didn't want me to end up hating her. She obviously struggled with this while caring for her mom. Sad, isn't it?
Why am I going on and on about this, especially on Valentine's Day, a day devoted to love? I cannot imagine any act more full of love than being a caretaker for someone with dementia. To put up with the worries, the financial burden, the almost total loss of any "me" time? Now, that is love personified. That is why I constantly say, "GOD BLESS THE CAREGIVERS!"
Sunday, February 7, 2016
Just Pray Harder
I am finally going to tackle a subject that has been irritating me to no end. It is a challenge though. How do you talk about religion without offending anyone? I probably can't, so those of you who don't agree, please realize this will only express my feelings and I respect yours as well.
Recently, a friend who also has FTD was talking about an issue that has been with them for decades, but now with FTD, it is really bothering her. To put it behind her, she really feels she needs an apology from the one who wronged her. With the little I know of the problem, she certainly deserves one. I also am sure that she will never get one, which breaks my heart. She has been praying about it, but just can't seem to let it go.
I, also, had a violent act in my life that affected me greatly in the past. It has also been decades since this event and I had done a pretty good job of putting it behind me and rarely thought of it anymore. Then FTD hit!!! This event, along with a few other traumatic events, popped back into the forefront of my brain. I have tried praying, I have tried "giving it to God" to no avail. I can't say that I dwell on the subject, but I am back to the anger stage in trying to deal with it.
My friend and I have received the same advice from some others. We need to pray harder. We need to forgive. If we can't forgive, we aren't praying hard enough. Excuse me? How can anyone presume to know what conversations I have with God or how often I have those conversations? How can anyone, who has not been through the same kind of event, decide that they know how to deal with it? I know how to deal with it, I dealt with it many years ago, but now, thanks to FTD, I must deal with it again.
FTD is different from Alzheimer's in the fact that those with FTD tend to not lose their memory until the advanced stages. Those with Alzheimer's tend to lose their recent memory pretty early in the process. I have spent much time with Alzheimer's patients who are totally living in the past, buried in their memories. Because of this difference, it doesn't seem to make sense that past traumatic memories have resurfaced and just won't go back into the past where they belong. Then again, what does make sense about FTD?
For someone to be judgmental about this, and tell us that we need to forgive, let it go and pray more, in my mind is unconscionable. To begin with, I firmly believe that everyone has their own relationship with God and that no one should presume that they may pass judgement on mine. Also, when someone is struggling to deal with an issue like this, the last thing they need is to be judged by someone who knows nothing about the issue.
My faith brings me great comfort in dealing with FTD. It also brings me comfort in dealing with my past issues. That comfort comes from, through the help of God, being able to forgive myself and to rid myself of the unreasonable idea that it was my fault. I have also been able to forgive those who "trespassed against me." Unfortunately, with FTD, it comes down to the adage of "forgive but don't forget". It is stuck in my brain and won't move out. No amount of "praying harder" is going to make a difference. I don't believe you have to beg God. He knows what I truly need.
The hypocrites who think they can preach at me are useless to me. The people in my church, those who seem to think they know all about dementia and have decided (and made it clear to me) that there is nothing wrong with me because I don't have all the Alzheimer's symptoms, no longer have a place in my life. I forgive them, but I don't need to expose myself to that negativity. Positive things help me deal with FTD, not negative ones. The same goes for the people in my church who say they care about me, but when they think I cannot see, they roll their eyes or look at me with disdain.
These are the same people who ask why I don't attend church or the social functions of the church. The biggest reason I don't attend is the crowds. You put me with more than two or three people and I become extremely stressed and my symptoms worsen. For the past 3 or so years, I have been able to manage to attend a small group meeting within the church. However, after a few months of being totally ignored during the potluck dinner and the meeting, excluded from conversations and being looked at in a disdainful way (and, no, I don't imagine it), I can no longer handle the stress of that either. Like I said before, I need positive influences, not negative ones. What is interesting to me is that the so-called "pillars of the church" seem to be the worst offenders. I suspect they are also some of the ones who think I just need to pray harder...
Recently, a friend who also has FTD was talking about an issue that has been with them for decades, but now with FTD, it is really bothering her. To put it behind her, she really feels she needs an apology from the one who wronged her. With the little I know of the problem, she certainly deserves one. I also am sure that she will never get one, which breaks my heart. She has been praying about it, but just can't seem to let it go.
I, also, had a violent act in my life that affected me greatly in the past. It has also been decades since this event and I had done a pretty good job of putting it behind me and rarely thought of it anymore. Then FTD hit!!! This event, along with a few other traumatic events, popped back into the forefront of my brain. I have tried praying, I have tried "giving it to God" to no avail. I can't say that I dwell on the subject, but I am back to the anger stage in trying to deal with it.
My friend and I have received the same advice from some others. We need to pray harder. We need to forgive. If we can't forgive, we aren't praying hard enough. Excuse me? How can anyone presume to know what conversations I have with God or how often I have those conversations? How can anyone, who has not been through the same kind of event, decide that they know how to deal with it? I know how to deal with it, I dealt with it many years ago, but now, thanks to FTD, I must deal with it again.
FTD is different from Alzheimer's in the fact that those with FTD tend to not lose their memory until the advanced stages. Those with Alzheimer's tend to lose their recent memory pretty early in the process. I have spent much time with Alzheimer's patients who are totally living in the past, buried in their memories. Because of this difference, it doesn't seem to make sense that past traumatic memories have resurfaced and just won't go back into the past where they belong. Then again, what does make sense about FTD?
For someone to be judgmental about this, and tell us that we need to forgive, let it go and pray more, in my mind is unconscionable. To begin with, I firmly believe that everyone has their own relationship with God and that no one should presume that they may pass judgement on mine. Also, when someone is struggling to deal with an issue like this, the last thing they need is to be judged by someone who knows nothing about the issue.
My faith brings me great comfort in dealing with FTD. It also brings me comfort in dealing with my past issues. That comfort comes from, through the help of God, being able to forgive myself and to rid myself of the unreasonable idea that it was my fault. I have also been able to forgive those who "trespassed against me." Unfortunately, with FTD, it comes down to the adage of "forgive but don't forget". It is stuck in my brain and won't move out. No amount of "praying harder" is going to make a difference. I don't believe you have to beg God. He knows what I truly need.
The hypocrites who think they can preach at me are useless to me. The people in my church, those who seem to think they know all about dementia and have decided (and made it clear to me) that there is nothing wrong with me because I don't have all the Alzheimer's symptoms, no longer have a place in my life. I forgive them, but I don't need to expose myself to that negativity. Positive things help me deal with FTD, not negative ones. The same goes for the people in my church who say they care about me, but when they think I cannot see, they roll their eyes or look at me with disdain.
These are the same people who ask why I don't attend church or the social functions of the church. The biggest reason I don't attend is the crowds. You put me with more than two or three people and I become extremely stressed and my symptoms worsen. For the past 3 or so years, I have been able to manage to attend a small group meeting within the church. However, after a few months of being totally ignored during the potluck dinner and the meeting, excluded from conversations and being looked at in a disdainful way (and, no, I don't imagine it), I can no longer handle the stress of that either. Like I said before, I need positive influences, not negative ones. What is interesting to me is that the so-called "pillars of the church" seem to be the worst offenders. I suspect they are also some of the ones who think I just need to pray harder...
Sunday, January 31, 2016
Be Your Own Advocate
http://memory.ucsf.edu/ftd/overview/ftd/treatment/multiple/medications-avoid
I am leading off today with a website that lists drugs that are not good for those with FTD. Notice this statement in the lead-off paragraph:
"Cholinesterase inhibitors, such as donepezil (Aricept®), rivastigmine (Exelon®) and galantamine (Razadyne®), are prescribed for people with Alzheimer's disease. They seem to work by helping people to improve attention and working memory by increasing the amount of acetylcholine, a chemical in the brain. Unfortunately most people with frontotemporal dementia do not benefit from these medications and may even become more agitated when they are tried. Generally, cholinesterase inhibitors are not recommended for patients diagnosed with FTD."
I continue to be amazed and frustrated each time I learn that someone with FTD has been prescribed these drugs. I am pretty sure this issue relates to the problem that even physicians have no idea what FTD is! They hear "dementia" and automatically assume it is Alzheimer's or that it should be treated in the same way. It downright frightens me that there are so many with FTD who are being misdiagnosed or improperly treated.
I know I have written before about my own experience with these drugs. I was prescribed Aricept (later changed to Razadine due to horrible nightmares) and Namenda. The cost of the Namenda alone, would put me in the "donut hole" by the month of March, which meant I had to pay out of pocket for the remaining nine months. I was going broke by taking a drug that was doing no good. I weaned myself off both of the drugs and was amazed at how clearer my mind was. I describe it as "less fuzzy." I would never suggest that anyone removed themselves from the drugs on their own the way I did. It should always be discussed with a physician first to safely wean off any drug. I am very fortunate that I did not encounter a problem on my own, it was pretty darned stupid of me. I know better!
Right now, I am taking a prescription drug to, hopefully, allow me to pass a kidney stone. I am experiencing an absolutely horrible constant headache. Writing this blog entry is the first productive thing I have done in the five days I have been taking the drug. I immediately tried to find any research about the drug being harmful to those with FTD, but could not find anything. I did find that a severe headache is a fairly common side effect of the drug in general.
I would have quickly discontinued taking the drug, except that the other alternative was surgical removal under full anesthesia. While I have not found any research to confirm a link, I have read of specific instances where the person with FTD or the caregiver, observed a decline after being given anesthesia.
If this medication doesn't help me pass the stone on my own, I will insist on a sit-down conversation with the anesthesiologist prior to the day of surgery. I am thinking there should be alternative means of anesthesia available, such as a spinal block. I would, of course, not refuse anesthesia if faced with no alternative.
The first part of this entry was triggered by hearing, yesterday, of yet another person with a definitive diagnosis of FTD, not Alzheimer's, who was prescribed the drugs. The second part, at least with my recent experience, reminded me of how, when you have a diagnosis of FTD, you must work closely with all your doctors, not just your neurologist.
In my opinion, we, who have a diagnosis of FTD, and/or our caregivers have to self-educate ourselves. This means, not only to educate yourself on FTD, but to keep up-to-date on new findings. We must be our own advocate and not be afraid to ask questions from all physicians you encounter. Insist on answers, not accept that since they are doctors, they know everything about FTD or that they know more than you do.
We learned this lesson about 8 years ago when I was diagnosed with Hodgkin's Lymphoma. My husband became my advocate. He started keeping a binder of all medical reports, lab reports, medications etc. We avoided duplicate testing by the different doctors involved with my healthcare. He actually caught a severe deficiency that needed immediate attention. Ask questions!
I am leading off today with a website that lists drugs that are not good for those with FTD. Notice this statement in the lead-off paragraph:
"Cholinesterase inhibitors, such as donepezil (Aricept®), rivastigmine (Exelon®) and galantamine (Razadyne®), are prescribed for people with Alzheimer's disease. They seem to work by helping people to improve attention and working memory by increasing the amount of acetylcholine, a chemical in the brain. Unfortunately most people with frontotemporal dementia do not benefit from these medications and may even become more agitated when they are tried. Generally, cholinesterase inhibitors are not recommended for patients diagnosed with FTD."
I continue to be amazed and frustrated each time I learn that someone with FTD has been prescribed these drugs. I am pretty sure this issue relates to the problem that even physicians have no idea what FTD is! They hear "dementia" and automatically assume it is Alzheimer's or that it should be treated in the same way. It downright frightens me that there are so many with FTD who are being misdiagnosed or improperly treated.
I know I have written before about my own experience with these drugs. I was prescribed Aricept (later changed to Razadine due to horrible nightmares) and Namenda. The cost of the Namenda alone, would put me in the "donut hole" by the month of March, which meant I had to pay out of pocket for the remaining nine months. I was going broke by taking a drug that was doing no good. I weaned myself off both of the drugs and was amazed at how clearer my mind was. I describe it as "less fuzzy." I would never suggest that anyone removed themselves from the drugs on their own the way I did. It should always be discussed with a physician first to safely wean off any drug. I am very fortunate that I did not encounter a problem on my own, it was pretty darned stupid of me. I know better!
Right now, I am taking a prescription drug to, hopefully, allow me to pass a kidney stone. I am experiencing an absolutely horrible constant headache. Writing this blog entry is the first productive thing I have done in the five days I have been taking the drug. I immediately tried to find any research about the drug being harmful to those with FTD, but could not find anything. I did find that a severe headache is a fairly common side effect of the drug in general.
I would have quickly discontinued taking the drug, except that the other alternative was surgical removal under full anesthesia. While I have not found any research to confirm a link, I have read of specific instances where the person with FTD or the caregiver, observed a decline after being given anesthesia.
If this medication doesn't help me pass the stone on my own, I will insist on a sit-down conversation with the anesthesiologist prior to the day of surgery. I am thinking there should be alternative means of anesthesia available, such as a spinal block. I would, of course, not refuse anesthesia if faced with no alternative.
The first part of this entry was triggered by hearing, yesterday, of yet another person with a definitive diagnosis of FTD, not Alzheimer's, who was prescribed the drugs. The second part, at least with my recent experience, reminded me of how, when you have a diagnosis of FTD, you must work closely with all your doctors, not just your neurologist.
In my opinion, we, who have a diagnosis of FTD, and/or our caregivers have to self-educate ourselves. This means, not only to educate yourself on FTD, but to keep up-to-date on new findings. We must be our own advocate and not be afraid to ask questions from all physicians you encounter. Insist on answers, not accept that since they are doctors, they know everything about FTD or that they know more than you do.
We learned this lesson about 8 years ago when I was diagnosed with Hodgkin's Lymphoma. My husband became my advocate. He started keeping a binder of all medical reports, lab reports, medications etc. We avoided duplicate testing by the different doctors involved with my healthcare. He actually caught a severe deficiency that needed immediate attention. Ask questions!
Tuesday, January 12, 2016
No Apologies Needed
It has reached the point that when I hear someone tell me "You look really great," I feel like I should apologize for it. The reason is simple. I have been told so many times that I look really good so I must not actually have dementia. I get the same thing when someone realizes that I can usually still carry on an at least a semi-intelligent conversation or that I can read and write (type, no one could read my handwriting after about two words). So when someone says that I look really great, I actually hear that I really look good so I can't possibly have dementia.
My usual response is that yes, I am very fortunate and that I am thankful that I have FTD and not Alzheimer's. I no longer try to educate individuals about FTD unless they show a bit of interest in what it is and what I am dealing with. It is simply a waste of my time and energy. I wish I could say something like that I wish their ignorance of forms of dementia other than Alzheimer's would make it so. Neither FTD or Alzheimer's is better than the other. They are both terminal diseases that rob you of your abilities, both mental and physical, and memory. To simplify it, the biggest difference between any of the dementias is that the stages of loss come in different orders.
I find myself constantly apologizing for my dementia. I do this often when I am attempting to check out at a store or order food at a restaurant or when asking for instructions. I have to take things very slowly and one step at a time or I get very confused and agitated. When the person I am dealing with or those who are in line behind me start getting impatient, I immediately start apologizing. This happens often enough that it has become ingrained in me.
Maybe I should wear a shirt that says "I am not a liar, I really do have dementia."
What I should not have to explain or justify is that I probably do look pretty good. I have lost over 50 pounds in the last five years. I also had cataract surgery so I no longer must wear eyeglasses that were almost half an inch thick. I also take the time to apply a little makeup to make myself feel a little better about myself. I also often wear some colorful jewelry to brighten up my face. It brightens not only my face but also my spirits, just a bit, to know I look as good as possible.
I thank God every day that I can still read a book or write a blog. The doubters do not realize that I read books that I used to think were a waste of time, the light-hearted ones that you know how it's going to end after the first chapter. Well, at least I used to know. They don't know how many words I have to stop and look up because I forget what they mean. (Thankfully, my Nook allows me to click on the word and the definition comes up for me.) They have no clue as to how long it takes me to write a blog entry. They have no clue that my jacket is hanging open because I can no longer figure out how to use the zipper and refuse to ask someone to help me.
The doubters also don't stop and think that I speak a lot slower than I used to. I do this because the thoughts do not formulate as quickly as before. They don't realize that I have only stuttered or used incorrect words a few times during our conversation. That it is because I am having a few moments of clarity.
The one thing I absolutely refuse to apologize for is making my "friends" feel awkward to the point that they avoid me as much as possible, if not totally. Just about all of my "before FTD" friends are in this category. My "after FTD" friends are the real deal. They accept me as I am and are not embarrassed to be seen in public with me. While these friends are smaller in number, they are much better people in my book. I haven't had to apologize to a single one of them.
My usual response is that yes, I am very fortunate and that I am thankful that I have FTD and not Alzheimer's. I no longer try to educate individuals about FTD unless they show a bit of interest in what it is and what I am dealing with. It is simply a waste of my time and energy. I wish I could say something like that I wish their ignorance of forms of dementia other than Alzheimer's would make it so. Neither FTD or Alzheimer's is better than the other. They are both terminal diseases that rob you of your abilities, both mental and physical, and memory. To simplify it, the biggest difference between any of the dementias is that the stages of loss come in different orders.
I find myself constantly apologizing for my dementia. I do this often when I am attempting to check out at a store or order food at a restaurant or when asking for instructions. I have to take things very slowly and one step at a time or I get very confused and agitated. When the person I am dealing with or those who are in line behind me start getting impatient, I immediately start apologizing. This happens often enough that it has become ingrained in me.
Maybe I should wear a shirt that says "I am not a liar, I really do have dementia."
What I should not have to explain or justify is that I probably do look pretty good. I have lost over 50 pounds in the last five years. I also had cataract surgery so I no longer must wear eyeglasses that were almost half an inch thick. I also take the time to apply a little makeup to make myself feel a little better about myself. I also often wear some colorful jewelry to brighten up my face. It brightens not only my face but also my spirits, just a bit, to know I look as good as possible.
I thank God every day that I can still read a book or write a blog. The doubters do not realize that I read books that I used to think were a waste of time, the light-hearted ones that you know how it's going to end after the first chapter. Well, at least I used to know. They don't know how many words I have to stop and look up because I forget what they mean. (Thankfully, my Nook allows me to click on the word and the definition comes up for me.) They have no clue as to how long it takes me to write a blog entry. They have no clue that my jacket is hanging open because I can no longer figure out how to use the zipper and refuse to ask someone to help me.
The doubters also don't stop and think that I speak a lot slower than I used to. I do this because the thoughts do not formulate as quickly as before. They don't realize that I have only stuttered or used incorrect words a few times during our conversation. That it is because I am having a few moments of clarity.
The one thing I absolutely refuse to apologize for is making my "friends" feel awkward to the point that they avoid me as much as possible, if not totally. Just about all of my "before FTD" friends are in this category. My "after FTD" friends are the real deal. They accept me as I am and are not embarrassed to be seen in public with me. While these friends are smaller in number, they are much better people in my book. I haven't had to apologize to a single one of them.
Sunday, January 10, 2016
Speak Up for Yourself
There is something I need to talk about today and is geared to both those with FTD and those who are caring for someone who does. If my story begins to bore you, please at least read the final paragraph.
On Friday afternoon, I had the unfortunate experience of needing an immediate appointment with my doctor due to some pretty frightening symptoms. I am fortunate that my doctor knows me, knows my history and is one who truly cares about her patients. I know, this should be true of all doctors, but the reality of it is not.
It only took her a few minutes to suspect a kidney stone. I have no history of stones or kidney-related problems. She decided to immediately send me to the hospital's outpatient center for some blood work and a CT scan. She told me that on her order ahwwr, she had written that I should be held there until they called her with the results and she would speak with me then. Then she reminded me again because she knows of the problems I have with my FTD. I'll skip ahead and say that I did indeed have a kidney stone but it was not blocking anything, so I was sent home in the hope it would pass. Oh, and I am to call her Monday morning.
Backing up now. My husband had escorted me to the doctor, but we were expecting someone to deliver something to our home shortly after the appointment. I called my sister and she met us at the outpatient center (which is conveniently only a few blocks from her home) and was my patient escort and anxiety reducer for the next couple hours.
After being registered, I was almost immediately invited to the lab draw area. I insisted my sister accompany me and they allowed it even though there wasn't much room for her. I wasn't confused by the blood draw, but I also had a urine culture specimen to deliver to them because the courier had already left my doctor's office. I also had my purse, my coat and yet more paperwork. Having more than one thing to worry about confuses me and causes more anxiety, so I was really thankful to have her with me.
Next, we were off to radiology where we had to wait for our number to be called. When it was, all my patient information was verified again then we were taken to another waiting area. After a while, I was invited into another small office to review things. When my sister got up, we were told there wasn't enough room. I actually stood up for myself and am quite proud of myself!!! I told the clinician that I have FTD, a rarer form of dementia, get confused and must have her with me. Guess what? No problem. She had nowhere to sit, but she came along.
It turned out to be a very good thing. I was handed two bottles of that awful thick, horrid contrast crap to drink. I immediately got upset because I just cannot handle drinking that and usually throw it up as soon as I drink it. My sister calmed me down and explained that the doctor said I didn't need the contrast, that the stone would show up quite clearly on its own. When the staff person realized we were looking for a kidney stone, she finally informed me that I was allowed to refuse to drink it and that she would note that I had on my chart. With my anxiety level over this issue, I would have been a mess if my sister had not accompanied.
Next, you guessed it, off to another waiting area. This time, I knew she wouldn't be able to go into the CT area with me, but she took all my stuff so I had nothing to fuss over and made sure I thought I would be okay. It was fine. I have had many CT's, MRI's and PET scans in the past ten years, so I didn't freak out inside the machine .
I had told everyone I encountered, at least twice each, that I was not to be sent home. Between her order sheet and my constant haranguing, I was held in the waiting room again. I was warned that it would most likely be at least an hour before they would get back to me. Fifteen minutes later, I was called to a phone on the reception desk and my doctor was explaining everything to me. I was allowed to go home and am to call her on Monday morning and we will decide what direction to go if I didn't pass it over the weekend.
Bottom line on why I am sharing this probably very boring story: Never be reluctant to speak up for yourself in any medical situation. They will not think any less of you if you let them know your situation. In fact, you will probably get better care. Secondly, try to have someone with you who knows you well, knows your medical history and is not reluctant to speak up and truly be your representative.
On Friday afternoon, I had the unfortunate experience of needing an immediate appointment with my doctor due to some pretty frightening symptoms. I am fortunate that my doctor knows me, knows my history and is one who truly cares about her patients. I know, this should be true of all doctors, but the reality of it is not.
It only took her a few minutes to suspect a kidney stone. I have no history of stones or kidney-related problems. She decided to immediately send me to the hospital's outpatient center for some blood work and a CT scan. She told me that on her order ahwwr, she had written that I should be held there until they called her with the results and she would speak with me then. Then she reminded me again because she knows of the problems I have with my FTD. I'll skip ahead and say that I did indeed have a kidney stone but it was not blocking anything, so I was sent home in the hope it would pass. Oh, and I am to call her Monday morning.
Backing up now. My husband had escorted me to the doctor, but we were expecting someone to deliver something to our home shortly after the appointment. I called my sister and she met us at the outpatient center (which is conveniently only a few blocks from her home) and was my patient escort and anxiety reducer for the next couple hours.
After being registered, I was almost immediately invited to the lab draw area. I insisted my sister accompany me and they allowed it even though there wasn't much room for her. I wasn't confused by the blood draw, but I also had a urine culture specimen to deliver to them because the courier had already left my doctor's office. I also had my purse, my coat and yet more paperwork. Having more than one thing to worry about confuses me and causes more anxiety, so I was really thankful to have her with me.
Next, we were off to radiology where we had to wait for our number to be called. When it was, all my patient information was verified again then we were taken to another waiting area. After a while, I was invited into another small office to review things. When my sister got up, we were told there wasn't enough room. I actually stood up for myself and am quite proud of myself!!! I told the clinician that I have FTD, a rarer form of dementia, get confused and must have her with me. Guess what? No problem. She had nowhere to sit, but she came along.
It turned out to be a very good thing. I was handed two bottles of that awful thick, horrid contrast crap to drink. I immediately got upset because I just cannot handle drinking that and usually throw it up as soon as I drink it. My sister calmed me down and explained that the doctor said I didn't need the contrast, that the stone would show up quite clearly on its own. When the staff person realized we were looking for a kidney stone, she finally informed me that I was allowed to refuse to drink it and that she would note that I had on my chart. With my anxiety level over this issue, I would have been a mess if my sister had not accompanied.
Next, you guessed it, off to another waiting area. This time, I knew she wouldn't be able to go into the CT area with me, but she took all my stuff so I had nothing to fuss over and made sure I thought I would be okay. It was fine. I have had many CT's, MRI's and PET scans in the past ten years, so I didn't freak out inside the machine .
I had told everyone I encountered, at least twice each, that I was not to be sent home. Between her order sheet and my constant haranguing, I was held in the waiting room again. I was warned that it would most likely be at least an hour before they would get back to me. Fifteen minutes later, I was called to a phone on the reception desk and my doctor was explaining everything to me. I was allowed to go home and am to call her on Monday morning and we will decide what direction to go if I didn't pass it over the weekend.
Bottom line on why I am sharing this probably very boring story: Never be reluctant to speak up for yourself in any medical situation. They will not think any less of you if you let them know your situation. In fact, you will probably get better care. Secondly, try to have someone with you who knows you well, knows your medical history and is not reluctant to speak up and truly be your representative.
Sunday, January 3, 2016
I Can Still Be Me
I had such a wonderful time New Year's Eve. No, I wasn't exactly out partying until the wee hours of the morning. My husband and I did, however, meet for an early dinner with a couple whom we had not visited with in quite some time. It ended up being a late dinner too, we were there for over two hours, just chatting and getting caught up. They are both right around our daughter's age, so you might not pick this as a great friendship, but it is.
They have helped us out a few times when we needed muscle and brawn and we have helped them out a few times when they didn't need muscle or brawn. Perhaps we settled into being friends with them so easily because they filled part of the void created when our daughter moved out of state.
It doesn't matter why, all that matters is that we are solid friends. We don't see them as often as we used to for two reasons, the first being that they moved about 45 min. away and the second is that I am reluctant to socialize.
This reluctance to socialize boils down to things I have vented about many times on this blog. Primarily, it is because so many people don't want to be bothered with me anymore. I don't know if it is their fear that I might embarrass them in public (easily remedied by visiting me at home) or that it is difficult to carry on a conversation with me because of my speech difficulties. I truly do not know whatever else it could be. So, I am avoided by people I considered close friends. Some that hurt the worst was friends from church, several who have been downright rude to me. Somehow, I think we all expect our Christian friends to be a little more charitable with their patience and understanding. But I have gone off on this subject enough times and don't need to dwell on it now.
The four of us talked non-stop the whole time. In fact, I talked so much I only ate a quarter of my meal. When I had speech problems, they patiently waited, knowing I would get it out sooner rather than later. Yes, we discussed my FTD, but we talked about so many different topics. They have a lot of interesting things going on in their lives right now as well. It was just an awesome feeling to be accepted!
Why am I going on about this one evening? Simply because I was so comfortable. The restaurant was crowded and noisy and it did not bother me at all. It did help some that we got seated in a booth in a back corner of the restaurant where it was a little less hectic and noisy. The one thing, though, that helped the most was that I felt accepted for who I am, not rejected because of what disease I have. I cannot possible express how wonderful I felt during and after our visit. I felt like I was "me" for a couple hours.
To top it all off, they posted on Facebook about what a wonderful time they had as well. I think it would amaze some people how normal I can be if they just overlook the disease. I am still in there if they only take the time to look past the disease!
They have helped us out a few times when we needed muscle and brawn and we have helped them out a few times when they didn't need muscle or brawn. Perhaps we settled into being friends with them so easily because they filled part of the void created when our daughter moved out of state.
It doesn't matter why, all that matters is that we are solid friends. We don't see them as often as we used to for two reasons, the first being that they moved about 45 min. away and the second is that I am reluctant to socialize.
This reluctance to socialize boils down to things I have vented about many times on this blog. Primarily, it is because so many people don't want to be bothered with me anymore. I don't know if it is their fear that I might embarrass them in public (easily remedied by visiting me at home) or that it is difficult to carry on a conversation with me because of my speech difficulties. I truly do not know whatever else it could be. So, I am avoided by people I considered close friends. Some that hurt the worst was friends from church, several who have been downright rude to me. Somehow, I think we all expect our Christian friends to be a little more charitable with their patience and understanding. But I have gone off on this subject enough times and don't need to dwell on it now.
The four of us talked non-stop the whole time. In fact, I talked so much I only ate a quarter of my meal. When I had speech problems, they patiently waited, knowing I would get it out sooner rather than later. Yes, we discussed my FTD, but we talked about so many different topics. They have a lot of interesting things going on in their lives right now as well. It was just an awesome feeling to be accepted!
Why am I going on about this one evening? Simply because I was so comfortable. The restaurant was crowded and noisy and it did not bother me at all. It did help some that we got seated in a booth in a back corner of the restaurant where it was a little less hectic and noisy. The one thing, though, that helped the most was that I felt accepted for who I am, not rejected because of what disease I have. I cannot possible express how wonderful I felt during and after our visit. I felt like I was "me" for a couple hours.
To top it all off, they posted on Facebook about what a wonderful time they had as well. I think it would amaze some people how normal I can be if they just overlook the disease. I am still in there if they only take the time to look past the disease!
Wednesday, December 30, 2015
Totally Frustrated, Again
I must write a blog entry today to release some of my frustration. This one is to hopefully explain something more fully to the caretakers who might be reading this.
I constantly say "Please, one thing at a time!" and have mentioned that concept many times in my blog entries. It seems like such a simple request, yet I keep finding that caretakers cannot grasp the meaning behind the request. Not only do I witness this in my own home, but also read about the same problem on a couple of the online support groups' postings. It shows up often on the support groups that include caregivers more so than those with FTD.
I am guessing that it is the question about just what makes up that one thing. I think when I say "one thing" it is heard that I cannot, for example, jump rope and chew gum at the same time. Forget the gum! The problem, for me anyway, is figuring out how to turn the rope and move my feet at the same time, maybe even just how to use both arms to turn the rope.
It is also answering any question while I am doing something. If I am reading the directions on a package of food, if I am asked something like "What temperature does it say?" I am totally thrown off. Yes, I usually end up lashing out at the one asking the question. Am I angry with that person? Not really, but I am so very frustrated because I have to answer "I don't know yet" or answer the question and then start at the very beginning of reading the instructions again. Repeat something like this a few times and I am ready to throw the package at the person asking the questions.
Sometimes, I do literally throw something... usually in the trash. Again, it is not because I am truly angry. It is because I have reached the level of frustration that the only option I can see is to give up. I have lost all interest in the task I was attempting and no longer care if it gets done or not.
At that point, the person who helped bring me to that point says something like, "Please stop" or "don't be like that." Wrong response, no matter how you look at it. First, this is like reminding me that I failed and dismissing my anxiety and frustration. Secondly, I don't do it on purpose! It is the horrid disease preventing me from doing something that should, and used to, happen spontaneously, without even thinking about it. Instead of calming me down, this type of response just adds to the frustration level to the point that I feel depressed because I am so useless and because I irritate everyone.
Come to think of it, many of the issues that I experience or witness with others, are also the result of the caretaker not being able to understand what we are experiencing. For example, if I am pacing or wandering around like I am lost (some even leave the house and roam around outside which can be quite dangerous) or sleeping during the day, it is usually because I am so bored and frustrated that I cannot do anything. Most days, my choices come down to whether I should clean the house or read or sit and do nothing. Not much of a choice. At least I am still fortunate enough to be able to clean the house and read. But these options are nothing compared to the abilities I used to have, back when I felt I was actually contributing to society. Again, just that feeling of being useless and a burden to others.
It works the other way too. I have to constantly try to stop and think about the frustrations of the caregivers. This, though, is nearly impossible with an FTD mind, but I keep on trying.
Sunday, December 27, 2015
Too Much Christmas
Yikes! That is the best way to describe the past week. My blog entry last week was almost congratulating myself because I had finished the cookies and had all the preparations made in advance of the Christmas weekend. It is so easy to disillusion one's self.
It truly was awesome to have my daughter home for the entire week, but I had placed too much confidence in myself based on her being here. I could tell she felt pressured by everything I wanted her to do. She really enjoyed several visits with family and friends. What I didn't calculate into the formula was that this was her vacation. She had saved up her vacation days for this week long visit and expected to be able to relax.
I couldn't relax, though. I had my visions of how everything should be and what I should do to make it so. I tend to bury my head in the sand when it comes to admitting that FTD limits what I can and cannot do. By Christmas Eve, I had put so much pressure on myself, that I had a major breakdown. My daughter and I had driven (a 3-hour round trip) to visit some family she wanted to see while she was up here. That took a six-hour chunk of time out of all the preparations I needed to do for Christmas Eve dinner, Christmas brunch and Christmas dinner.
Don't get me wrong, I would not have given up that visit for anything. That chunk of time, however, had me working in a frenzy to get things done. My husband was napping and my daughter was tired from the trip and was also napping. I started the preparations. I made the egg casserole we always have Christmas morning because it needs to sit overnight before baking. I cleaned and de-stemmed three pounds of spinach, some for the casserole and the rest that was supposed to be for the spinach pie I was making for Christmas Eve dinner. Small tasks, such as scrubbing the potatoes for the next day, piled up and I was exhausted beyond being able to do another thing. I gave up making the spinach pie (but used the filling for Christmas dinner vegetable instead of what was going to make, so it didn't get wasted). I cleaned up as best I could in my exhausted state, then woke my husband from his nap and told him all the prep was done for Christmas and that I didn't give a hoot (actually I used a much nastier term) what they ate for dinner, and I went to bed. Fortunately we had dined out the night before for our wedding anniversary so they had some really nice leftovers to eat.
Several hours later, when I ventured out from my room, they both asked the logical question of "Why didn't you wake us up and ask for help?" Seems rather obvious, doesn't it. But I couldn't do it. I had always done it all and expected me to do it all myself.
In addition to the Christmas Eve meltdown, I learned the hard way that the evil symptoms of FTD seem to get much, much worse when under stress. I spent much of the week not being able to swallow most foods and spent much of the week trying to speak. In addition to the stuttering I have been doing for a few months now, I would end up stammering a single syllable in the middle of a sentence until I would stop trying to speak. Once I stopped, which was often difficult, and calmed myself down, it was enough better that I could get the thought out.
All the Christmas week commotion brought out that no matter how many times I tell my family members and friends that I can only focus on one thing at a time, they just don't "get" it. Something as simple as putting cookies on a plate is one thing. If I get asked if I want them to serve drinks, is another. Even when I would start stammering and stuttering, they didn't understand. One thing is a simple task, one step in a task or even trying to formulate an answer to a simple question is my one thing. It is not the time to ask me anything or suggest anything. I end up not being able to do either thing, my brain becomes a big tangle of thoughts and nothing at all makes sense
I did wise up a little bit. When Christmas dinner was done, I got up from the table and went into another room. They got the hint and all the clean up was done.
Bottom line, lesson learned. From now on, no holiday dinners or celebrations will be hosted by me. Please, someone remind me of that when Easter gets here!
One side note. My daughter brought her two cats along for the week. Once they got used to me and would snuggle with me, I realized how comforting a pet can be to someone with FTD. I think it would be important that someone else was willing and able to care for the pet, but the comfort of a pet could be a true gift. Of course, it seems selfish to ask your caretaker, who is already stretched too thin, to take on another onerous task!
Today, everyone has left and left a huge void. Even with all the crappy stuff, it was a wonderful holiday!
It truly was awesome to have my daughter home for the entire week, but I had placed too much confidence in myself based on her being here. I could tell she felt pressured by everything I wanted her to do. She really enjoyed several visits with family and friends. What I didn't calculate into the formula was that this was her vacation. She had saved up her vacation days for this week long visit and expected to be able to relax.
I couldn't relax, though. I had my visions of how everything should be and what I should do to make it so. I tend to bury my head in the sand when it comes to admitting that FTD limits what I can and cannot do. By Christmas Eve, I had put so much pressure on myself, that I had a major breakdown. My daughter and I had driven (a 3-hour round trip) to visit some family she wanted to see while she was up here. That took a six-hour chunk of time out of all the preparations I needed to do for Christmas Eve dinner, Christmas brunch and Christmas dinner.
Don't get me wrong, I would not have given up that visit for anything. That chunk of time, however, had me working in a frenzy to get things done. My husband was napping and my daughter was tired from the trip and was also napping. I started the preparations. I made the egg casserole we always have Christmas morning because it needs to sit overnight before baking. I cleaned and de-stemmed three pounds of spinach, some for the casserole and the rest that was supposed to be for the spinach pie I was making for Christmas Eve dinner. Small tasks, such as scrubbing the potatoes for the next day, piled up and I was exhausted beyond being able to do another thing. I gave up making the spinach pie (but used the filling for Christmas dinner vegetable instead of what was going to make, so it didn't get wasted). I cleaned up as best I could in my exhausted state, then woke my husband from his nap and told him all the prep was done for Christmas and that I didn't give a hoot (actually I used a much nastier term) what they ate for dinner, and I went to bed. Fortunately we had dined out the night before for our wedding anniversary so they had some really nice leftovers to eat.
Several hours later, when I ventured out from my room, they both asked the logical question of "Why didn't you wake us up and ask for help?" Seems rather obvious, doesn't it. But I couldn't do it. I had always done it all and expected me to do it all myself.
In addition to the Christmas Eve meltdown, I learned the hard way that the evil symptoms of FTD seem to get much, much worse when under stress. I spent much of the week not being able to swallow most foods and spent much of the week trying to speak. In addition to the stuttering I have been doing for a few months now, I would end up stammering a single syllable in the middle of a sentence until I would stop trying to speak. Once I stopped, which was often difficult, and calmed myself down, it was enough better that I could get the thought out.
All the Christmas week commotion brought out that no matter how many times I tell my family members and friends that I can only focus on one thing at a time, they just don't "get" it. Something as simple as putting cookies on a plate is one thing. If I get asked if I want them to serve drinks, is another. Even when I would start stammering and stuttering, they didn't understand. One thing is a simple task, one step in a task or even trying to formulate an answer to a simple question is my one thing. It is not the time to ask me anything or suggest anything. I end up not being able to do either thing, my brain becomes a big tangle of thoughts and nothing at all makes sense
I did wise up a little bit. When Christmas dinner was done, I got up from the table and went into another room. They got the hint and all the clean up was done.
Bottom line, lesson learned. From now on, no holiday dinners or celebrations will be hosted by me. Please, someone remind me of that when Easter gets here!
One side note. My daughter brought her two cats along for the week. Once they got used to me and would snuggle with me, I realized how comforting a pet can be to someone with FTD. I think it would be important that someone else was willing and able to care for the pet, but the comfort of a pet could be a true gift. Of course, it seems selfish to ask your caretaker, who is already stretched too thin, to take on another onerous task!
Today, everyone has left and left a huge void. Even with all the crappy stuff, it was a wonderful holiday!
Friday, December 18, 2015
Trying for the Perfect Holiday
So, here it is, one week until Christmas, just seven days to go. Christmas has been my favorite holiday ever since I left my childhood home. I would often spend two months getting ready for it to make it special for our family. Somehow, it would all come together with ease.
This year though, I struggled with baking cookies. Many people clamor for my cookies come Christmas time, and I have always tried to make everyone happy and made as many favorites as possible. I cut back this year, only baked 68 dozen and eliminated a couple of the really labor intensive ones. I just couldn't get into the groove of it this year. Used to be, I had a system going and cranked them out, enjoying myself the whole time. This year, it took twice as long, I made at least three times the mess.
The cookie baking during this Christmas season has been just too much stress and, yes, I do know I put it on myself. The cookie baking is very time consuming but I crank up the Christmas tunes and get into it. I enjoy the smiles on peoples faces when I deliver their cookies to them. I have learned, though, that the enjoyment is diminished by the exhaustion I am feeling. But the cookies are all in the freezer waiting to be put out onto trays. I delivered one tray yesterday and the rest of them will be delivered this coming week.
I did manage to do almost all the Christmas shopping online which helped a lot, but if I bought any of the wrong things, it is going to make it more inconvenient to return or exchange. I think it was a wise choice, even with that risk.
The best news in a long time: I am so very excited because my daughter and my grand"kitties" arrive tomorrow. They haven't been here for two years and they will be here for an entire 7 days, not even counting her travel days! That means lots of friends and family to visit. I have attempted to keep the schedule down to one event a day to help me stay calm. However, I have had to double up on a couple days. I know my daughter will be a big help at keeping me calm, she always has. She just seems to have an instinctual knowledge of when I need to get away for excitement or confusion, like loud noise or lots of people talking at the same time. She will protect me. Sitting here thinking about it, however, has me feeling quite anxious.
I have menus planned for most of the days so now I know I must make up a grocery list so I have everything on hand that I will need. I am determined to keep Christmas dinner simple, standing rib roast, twice baked potatoes, cauliflower casserole and rolls. That's it! Anyone wants something else, they are free to make it and bring it with them. Christmas brunch in the morning is another tradition with us, but Kris will help me with that. Plus, the mimosas we always have with brunch should help keep me at ease. As long as I don't have so many that I can't do the dinner!
All those issues aside, I am still sitting her feeling anxious. I read an article in a magazine today and from that, I kind of figured out what my problem is. I am so afraid that this will be either my last Christmas or at least the last one I can do for the family, Because of this fear, I want everything to be perfect for everyone, for my daughter, my husband, my sister and, yes, for myself. I feel like if I mess up the scheduled events and visits, I will ruin it for everyone. I feel like if the Christmas dinner isn't perfect, I will ruin it that way.
When I slip and say something to a family member, they say that they will do this or that. I cannot accept that though. In my mind, if I don't do it, it won't be perfect. If this is to be my last Christmas, or the last one I am capable of putting together, it MUST be perfect.
It will be perfect enough, I am sure. Let me take the time to wish you a very Merry Christmas and for my Jewish friends, I hope you had a wonderful Hanukah
This year though, I struggled with baking cookies. Many people clamor for my cookies come Christmas time, and I have always tried to make everyone happy and made as many favorites as possible. I cut back this year, only baked 68 dozen and eliminated a couple of the really labor intensive ones. I just couldn't get into the groove of it this year. Used to be, I had a system going and cranked them out, enjoying myself the whole time. This year, it took twice as long, I made at least three times the mess.
The cookie baking during this Christmas season has been just too much stress and, yes, I do know I put it on myself. The cookie baking is very time consuming but I crank up the Christmas tunes and get into it. I enjoy the smiles on peoples faces when I deliver their cookies to them. I have learned, though, that the enjoyment is diminished by the exhaustion I am feeling. But the cookies are all in the freezer waiting to be put out onto trays. I delivered one tray yesterday and the rest of them will be delivered this coming week.
I did manage to do almost all the Christmas shopping online which helped a lot, but if I bought any of the wrong things, it is going to make it more inconvenient to return or exchange. I think it was a wise choice, even with that risk.
The best news in a long time: I am so very excited because my daughter and my grand"kitties" arrive tomorrow. They haven't been here for two years and they will be here for an entire 7 days, not even counting her travel days! That means lots of friends and family to visit. I have attempted to keep the schedule down to one event a day to help me stay calm. However, I have had to double up on a couple days. I know my daughter will be a big help at keeping me calm, she always has. She just seems to have an instinctual knowledge of when I need to get away for excitement or confusion, like loud noise or lots of people talking at the same time. She will protect me. Sitting here thinking about it, however, has me feeling quite anxious.
I have menus planned for most of the days so now I know I must make up a grocery list so I have everything on hand that I will need. I am determined to keep Christmas dinner simple, standing rib roast, twice baked potatoes, cauliflower casserole and rolls. That's it! Anyone wants something else, they are free to make it and bring it with them. Christmas brunch in the morning is another tradition with us, but Kris will help me with that. Plus, the mimosas we always have with brunch should help keep me at ease. As long as I don't have so many that I can't do the dinner!
All those issues aside, I am still sitting her feeling anxious. I read an article in a magazine today and from that, I kind of figured out what my problem is. I am so afraid that this will be either my last Christmas or at least the last one I can do for the family, Because of this fear, I want everything to be perfect for everyone, for my daughter, my husband, my sister and, yes, for myself. I feel like if I mess up the scheduled events and visits, I will ruin it for everyone. I feel like if the Christmas dinner isn't perfect, I will ruin it that way.
When I slip and say something to a family member, they say that they will do this or that. I cannot accept that though. In my mind, if I don't do it, it won't be perfect. If this is to be my last Christmas, or the last one I am capable of putting together, it MUST be perfect.
It will be perfect enough, I am sure. Let me take the time to wish you a very Merry Christmas and for my Jewish friends, I hope you had a wonderful Hanukah
Sunday, December 6, 2015
Dealing with Mental Issues
I am so very thankful that I have a psychologist who helps me. Not only is she a psychologist, but she is one who specializes in dementia patients. No, I do not think that FTD is a mental health problem, but dealing with FTD can become a mental health issue.
I first sought out my psychologist when I was at an ultimate low and felt like I was at a breaking point. This was triggered by the frustration of being told by a prominent Alzheimer's research program that there was nothing wrong with me, not even MCI (Mild Cognitive Impairment). This was especially frustrating because one of their co-directors is the Neuro-Psychiatrist who first provided my diagnosis and had it confirmed by two SPECT scans, a year apart from each other.
I, of course, knew there was something wrong with my brain and was panicking that I would lose my Social Security Disability. It is only $800 per month and didn't come close to what I was making while I was working, but was certainly a big help to the budget.
I started calling around, especially to the largest psychiatric center in the area and they had no one who was familiar with FTD. They later, after I had also found her name, called me back with Dr. Spayd's phone number and recommended I call her. I was very fortunate that she did not have a waiting list at that time and got in to see her within two weeks. Good psychologists in this area are in high demand. I am now down to seeing her just once a month or more often if I have a crisis. Oh, and the report from the research center was incorrect.
I probably wrote about this in my blog when I first started it. What prompted me to write about this subject today, was a mini crisis. I immediately pulled out my calendar to make sure I was seeing her this week and I am scheduled for Wednesday. I think I can make it for three days.
It boggles my mind sometimes how I can be going along just fine, coping with everything that FTD throws in my face, then wham-o, something knocks me down. It is usually just something that seems so little and inconsequential, but when it gets piled on to everything else that someone with FTD deals with everyday, it becomes a crisis.
This is, of course, the holiday season which puts stress and strain on most everyone. As I wrote about last week, I thought I had everyone laid out in a way to limit the stress. I was setting smaller goals for each day to not only keep me from getting worn out physically, but mentally as well.
Today I had scheduled (well actually it was yesterday, but wasn't up to it and moved it to today) to wrap all the gifts. I have always disliked using gift bags for Christmas gifts, it just seemed to me that it made it look like I wasn't willing to make the effort to wrap the gifts. Plus wrapped ones look so pretty under the tree. I had finally convinced myself to at least use the bags for most gifts. When I mentioned to my daughter that most would be in bags, but everyone would have at least one or two wrapped ones. She, wise woman that she is, said "Why do you have to wrap any? Bags are fine!" So today, I spent about 2 1/2 hours working at it, and everything was packaged up looking pretty darned good, if I must say. I was feeling really good about it and about myself for accepting that I didn't have to do it all!
Then my husband comes up to me and asks if I didn't leave any paper and bows out for him. I explained, once again, that I was using gift bags and I did leave some out for him. He was adamant that he much preferred wrapping paper and bows because he was used to things being wrapped that way and thought it looked better. Gee, I wonder why I overreacted to that? Of course what I heard was that I was unable or too lazy to do things the "right" way. I doubt that he meant it like that at all, but, after feeling so good that the task was done and proud of myself for accepting the alternate way of doing it to make it easier, I sat for an hour with tears in my eyes, feeling like I was, once again, letting my family down.
I know the psychologist is going to tell me that this is his issue, not mine and that I am wise to cut back on the efforts needed for Christmas. I don't want to be exhausted once the holiday gets here. My remaining task is to start baking and freezing cookies. I make between 50 and 100 dozens of cookies each year to share with family and friends. Everyone looks forward to them and I view it as a gift of love. It does take a lot of effort, especially with FTD, which makes it difficult for me to follow a recipe, even ones that are very familiar to me. That is why I have done everything else early this year, so I would have the energy and time to do my baking.
I know that is what she is going to tell me, but I really need to hear it. That was why I was so relieved that I had an appointment in three days. I think, just maybe, I can keep from screaming at my husband and breaking down until then! I am so thankful that I found my psychologist and that her office is right here in our tiny little town. I don't think I would make it through this FTD battle without her. I think seeing a psychologist, especially one familiar with FTD, would benefit the one with FTD, as well as the caregivers. I don't think they should both see the same one though,
I first sought out my psychologist when I was at an ultimate low and felt like I was at a breaking point. This was triggered by the frustration of being told by a prominent Alzheimer's research program that there was nothing wrong with me, not even MCI (Mild Cognitive Impairment). This was especially frustrating because one of their co-directors is the Neuro-Psychiatrist who first provided my diagnosis and had it confirmed by two SPECT scans, a year apart from each other.
I, of course, knew there was something wrong with my brain and was panicking that I would lose my Social Security Disability. It is only $800 per month and didn't come close to what I was making while I was working, but was certainly a big help to the budget.
I started calling around, especially to the largest psychiatric center in the area and they had no one who was familiar with FTD. They later, after I had also found her name, called me back with Dr. Spayd's phone number and recommended I call her. I was very fortunate that she did not have a waiting list at that time and got in to see her within two weeks. Good psychologists in this area are in high demand. I am now down to seeing her just once a month or more often if I have a crisis. Oh, and the report from the research center was incorrect.
I probably wrote about this in my blog when I first started it. What prompted me to write about this subject today, was a mini crisis. I immediately pulled out my calendar to make sure I was seeing her this week and I am scheduled for Wednesday. I think I can make it for three days.
It boggles my mind sometimes how I can be going along just fine, coping with everything that FTD throws in my face, then wham-o, something knocks me down. It is usually just something that seems so little and inconsequential, but when it gets piled on to everything else that someone with FTD deals with everyday, it becomes a crisis.
This is, of course, the holiday season which puts stress and strain on most everyone. As I wrote about last week, I thought I had everyone laid out in a way to limit the stress. I was setting smaller goals for each day to not only keep me from getting worn out physically, but mentally as well.
Today I had scheduled (well actually it was yesterday, but wasn't up to it and moved it to today) to wrap all the gifts. I have always disliked using gift bags for Christmas gifts, it just seemed to me that it made it look like I wasn't willing to make the effort to wrap the gifts. Plus wrapped ones look so pretty under the tree. I had finally convinced myself to at least use the bags for most gifts. When I mentioned to my daughter that most would be in bags, but everyone would have at least one or two wrapped ones. She, wise woman that she is, said "Why do you have to wrap any? Bags are fine!" So today, I spent about 2 1/2 hours working at it, and everything was packaged up looking pretty darned good, if I must say. I was feeling really good about it and about myself for accepting that I didn't have to do it all!
Then my husband comes up to me and asks if I didn't leave any paper and bows out for him. I explained, once again, that I was using gift bags and I did leave some out for him. He was adamant that he much preferred wrapping paper and bows because he was used to things being wrapped that way and thought it looked better. Gee, I wonder why I overreacted to that? Of course what I heard was that I was unable or too lazy to do things the "right" way. I doubt that he meant it like that at all, but, after feeling so good that the task was done and proud of myself for accepting the alternate way of doing it to make it easier, I sat for an hour with tears in my eyes, feeling like I was, once again, letting my family down.
I know the psychologist is going to tell me that this is his issue, not mine and that I am wise to cut back on the efforts needed for Christmas. I don't want to be exhausted once the holiday gets here. My remaining task is to start baking and freezing cookies. I make between 50 and 100 dozens of cookies each year to share with family and friends. Everyone looks forward to them and I view it as a gift of love. It does take a lot of effort, especially with FTD, which makes it difficult for me to follow a recipe, even ones that are very familiar to me. That is why I have done everything else early this year, so I would have the energy and time to do my baking.
I know that is what she is going to tell me, but I really need to hear it. That was why I was so relieved that I had an appointment in three days. I think, just maybe, I can keep from screaming at my husband and breaking down until then! I am so thankful that I found my psychologist and that her office is right here in our tiny little town. I don't think I would make it through this FTD battle without her. I think seeing a psychologist, especially one familiar with FTD, would benefit the one with FTD, as well as the caregivers. I don't think they should both see the same one though,
Sunday, November 29, 2015
Choices
Much of our life comes down to choices. Where should we live, who should we marry, how many children should we have. Now these are certainly life changing choices. Sometimes, though, it is the smaller choices that give me the most trouble.
Since FTD, making choices is one of the most difficult things for me to do some days. Where would I like to go? What would I like to do? What shall I make for dinner. These choices are certainly not life altering, but definitely will make a difference in making my day to day life as comfortable and calm as possible.
I am finally learning to make some choices that I recognize just might make my life with FTD a little easier. For instance, decorating my home for all the holidays. Yes, I tend to get carried away and have multiple totes full of decorations for every holiday. This year, during Halloween season, I was busy and feeling down a lot of the days. My choice then was to not decorate the house. I put something up on the two exterior doors to great those who visited and pulled a my Halloween table runners out of the totes. That was it. Amazingly, the holiday still came and I was still ready for trick or treaters and the house still seemed somewhat seasonal.
Once I realized the world had indeed not come to an end, I did the same thing for Thanksgiving and just grabbed a few things out of the several totes for that holiday. Once I put the real turkey on the table, no one cared and I didn't feel like a total failure.
So, along comes the BIG one! I have at least six full size totes of decorations, plus one of lights and one extra large one of tree decorations and a second extra large one full of larger decorations for out on the porch. I am not even counting the one tote full of Christmas shirts and sweaters or box with the tree itself. (Yes, I use a fake tree. Helps, since I'm allergic to real ones.) There's also a wreath stored under the bed. I am sure you get the picture. Yes, I love holidays and making them special for my family and friends.
All this led up to a big choice. How much to decorate for Christmas? I asked my daughter if we needed the tree up. Her response was an immediate "Yes!" She will be arriving here on the 23rd, so she offered that we could decorate the tree on Christmas Eve. Uh, no. If I am going to put it up, I want to enjoy it for the whole month. So the tree stays. Determined to force myself to cut back, I only asked my husband to bring up the tree, the decorations, the decorations for the porch, my large nativity set and what I normally put on the mantle. That is only two of the regular sized totes, the rest are still in the garage. I made the choice and I stuck to it.
What amazes me is that the house still looks well decorated with only about half of my usual stuff. Plus, there is the added bonus of not having as many things for my grand"kitties" to knock down.
The other wise choice I made was to not try to do it all in one day. My husband helped me decorate the outside on Friday. Saturday, I put out most of the decorations, except my big nativity set which I set out on Sunday. Hmm... rather appropriate to do that on a Sunday. Plus I assembled the tree. Tomorrow, I will decorate the tree.
I have also convinced myself to use some gift bags instead of decoratively wrapping all the gifts. Most will go in bags, with a couple wrapped ones for each person. Today, when assembling the tree and putting the top decoration on, my husband was making "helpful" suggestions on what I could do to make it just a little better. I told him that it doesn't have to be 100% perfect, we can accept 80%. Then I realized, I needed to believe that too. I think I am well on my way to accepting that.
After all the decorating, will come the cookie baking. Nope, not cutting back on that. I get so much pleasure out of sharing my cookies with family and friends. I will stretch it out to more days, but not cut back. Fortunately, most of them freeze well, so I don't have to worry about making them too soon.
I think I have made a lot of good choices for the holidays. I am darned proud of myself... finally learning to respect the limitations that FTD puts on me. It is much easier to embrace them than it is to fight them!
Since FTD, making choices is one of the most difficult things for me to do some days. Where would I like to go? What would I like to do? What shall I make for dinner. These choices are certainly not life altering, but definitely will make a difference in making my day to day life as comfortable and calm as possible.
I am finally learning to make some choices that I recognize just might make my life with FTD a little easier. For instance, decorating my home for all the holidays. Yes, I tend to get carried away and have multiple totes full of decorations for every holiday. This year, during Halloween season, I was busy and feeling down a lot of the days. My choice then was to not decorate the house. I put something up on the two exterior doors to great those who visited and pulled a my Halloween table runners out of the totes. That was it. Amazingly, the holiday still came and I was still ready for trick or treaters and the house still seemed somewhat seasonal.
Once I realized the world had indeed not come to an end, I did the same thing for Thanksgiving and just grabbed a few things out of the several totes for that holiday. Once I put the real turkey on the table, no one cared and I didn't feel like a total failure.
So, along comes the BIG one! I have at least six full size totes of decorations, plus one of lights and one extra large one of tree decorations and a second extra large one full of larger decorations for out on the porch. I am not even counting the one tote full of Christmas shirts and sweaters or box with the tree itself. (Yes, I use a fake tree. Helps, since I'm allergic to real ones.) There's also a wreath stored under the bed. I am sure you get the picture. Yes, I love holidays and making them special for my family and friends.
All this led up to a big choice. How much to decorate for Christmas? I asked my daughter if we needed the tree up. Her response was an immediate "Yes!" She will be arriving here on the 23rd, so she offered that we could decorate the tree on Christmas Eve. Uh, no. If I am going to put it up, I want to enjoy it for the whole month. So the tree stays. Determined to force myself to cut back, I only asked my husband to bring up the tree, the decorations, the decorations for the porch, my large nativity set and what I normally put on the mantle. That is only two of the regular sized totes, the rest are still in the garage. I made the choice and I stuck to it.
What amazes me is that the house still looks well decorated with only about half of my usual stuff. Plus, there is the added bonus of not having as many things for my grand"kitties" to knock down.
The other wise choice I made was to not try to do it all in one day. My husband helped me decorate the outside on Friday. Saturday, I put out most of the decorations, except my big nativity set which I set out on Sunday. Hmm... rather appropriate to do that on a Sunday. Plus I assembled the tree. Tomorrow, I will decorate the tree.
I have also convinced myself to use some gift bags instead of decoratively wrapping all the gifts. Most will go in bags, with a couple wrapped ones for each person. Today, when assembling the tree and putting the top decoration on, my husband was making "helpful" suggestions on what I could do to make it just a little better. I told him that it doesn't have to be 100% perfect, we can accept 80%. Then I realized, I needed to believe that too. I think I am well on my way to accepting that.
After all the decorating, will come the cookie baking. Nope, not cutting back on that. I get so much pleasure out of sharing my cookies with family and friends. I will stretch it out to more days, but not cut back. Fortunately, most of them freeze well, so I don't have to worry about making them too soon.
I think I have made a lot of good choices for the holidays. I am darned proud of myself... finally learning to respect the limitations that FTD puts on me. It is much easier to embrace them than it is to fight them!
Sunday, November 22, 2015
Thanksgiving
I feel like writing something completely different this week. This is the week of the Thanksgiving holiday, time to be thankful. Of course I am thankful for all the usual things, my husband, my daughter, my sister, as well as all the rest of my family, including my step-family who are to me just family, no "step" about it! I am thankful for the roof over my head, my comfortable bed, that my house is warm and dry and that we never go hungry. I often went hungry as a child, so that one is much appreciated.
Sometimes, though, it is the unexpected things, the kindnesses of people I did not know well or the beauty I had never seen before that day. I'll start with that one. Yesterday, my husband was driving us to our local hardware store. The day was chilly, in the low 40's, but the sun was shining brightly and the sky was as blue as it gets. Add to that, the beauty of a couple white puffy clouds and some white intersecting jet contrails, it was just glorious.
When we arrived at the store, it was much more crowded than I like. If you have read previous blogs, you know that I, and most others with FTD, do not deal well with crowds. Most of the employees (or as they advertise, the helpful hardware folks) in this store are very knowledgeable and helpful. This day, however, we were assisted by a young man who knew a whole lot less about what we were looking for than I did. I think he was a relatively new employee. Between the crowd and the frustration of him, I was ready to leave. Just then, in walks Carla, my favorite person there. Carla knows everything! Plus, she picked up, probably a year or so ago, that something was different with me and asked my husband the next time he went in alone. After asking for my permission, he explained my FTD to her. She was always patient and helpful, but now when she sees me, she gets a beautiful smile and greets me, steers me to less crowded areas and calmly figures out just what I need. Such a patient and loving soul.
It is things like this that make me thankful from day to day. In the same vein, this past Friday, my sister took me out for the afternoon. First stop was our local CVS drugstore. Once I was at the register, I was confusing myself and getting agitated. I looked at the clerk and said "I'm sure you remember I have a rare dementia." She assured me it was quite okay, to take my time and not worry about it. I said I figured that it was okay since no one was behind us in line. Her response was that it didn't matter who was behind me in line, I should always take the time to do the transaction to prevent getting agitated and that she could always call someone else up to open another register.
Second stop was again another store. When I made it up to the register that time, I searched and searched and could not find my credit cards and of course started to panic. I do not usually carry much cash because it confuses me, but fortunately that day I had some. I dug our the $23 that I had, bummed five from my sister and paid in cash. Of course, then, I found my credit cards right where they belong in a pocket of my purse. He, just like the woman at the drug store, reassured me to stop worrying that I was the customer he was dealing with and it would take as long as it took to complete the purchase while keeping me comfortable.
Third stop, the craft store. My sister was shopping in the fabric department and low and behold, the only person working the department is someone who assisted me a couple years before. From what I was buying at that time, she realized that I must crochet nylon scrubbies and told me how much she loves them. I offered to bring some in for her, that I would not take money, but she should pay it forward sometime or put a little extra in the offering plate at her church. We recognized each other and she again thanked me. Even though I find it difficult to make them anymore, I did have a basket full of them at home and made the same offer again. It just made me feel good to see her again and brighten her day a little.
Fourth and final stop, a late lunch. Our server was looking a little harried and I asked if they had been busy and he said it had been very hectic and lots of grumpy customers. I told him he was lucky then because now he had our two smiling faces to cheer him up. We ended up having a really good time with him and he was ever so very friendly and helpful. We mentioned that we would be coming back for dinner for my sister's birthday with the whole family. He pulled out his phone and made a note to request to work the evening shift that day instead of the usual day shift so that he could serve us again, so I guess he had as much fun as we did.
So this week of Thanksgiving, these are the kind of things I will focus on. These are the kind of things that make this disease bearable, every time I experience what I call "random acts of kindness."
Sometimes, though, it is the unexpected things, the kindnesses of people I did not know well or the beauty I had never seen before that day. I'll start with that one. Yesterday, my husband was driving us to our local hardware store. The day was chilly, in the low 40's, but the sun was shining brightly and the sky was as blue as it gets. Add to that, the beauty of a couple white puffy clouds and some white intersecting jet contrails, it was just glorious.
When we arrived at the store, it was much more crowded than I like. If you have read previous blogs, you know that I, and most others with FTD, do not deal well with crowds. Most of the employees (or as they advertise, the helpful hardware folks) in this store are very knowledgeable and helpful. This day, however, we were assisted by a young man who knew a whole lot less about what we were looking for than I did. I think he was a relatively new employee. Between the crowd and the frustration of him, I was ready to leave. Just then, in walks Carla, my favorite person there. Carla knows everything! Plus, she picked up, probably a year or so ago, that something was different with me and asked my husband the next time he went in alone. After asking for my permission, he explained my FTD to her. She was always patient and helpful, but now when she sees me, she gets a beautiful smile and greets me, steers me to less crowded areas and calmly figures out just what I need. Such a patient and loving soul.
It is things like this that make me thankful from day to day. In the same vein, this past Friday, my sister took me out for the afternoon. First stop was our local CVS drugstore. Once I was at the register, I was confusing myself and getting agitated. I looked at the clerk and said "I'm sure you remember I have a rare dementia." She assured me it was quite okay, to take my time and not worry about it. I said I figured that it was okay since no one was behind us in line. Her response was that it didn't matter who was behind me in line, I should always take the time to do the transaction to prevent getting agitated and that she could always call someone else up to open another register.
Second stop was again another store. When I made it up to the register that time, I searched and searched and could not find my credit cards and of course started to panic. I do not usually carry much cash because it confuses me, but fortunately that day I had some. I dug our the $23 that I had, bummed five from my sister and paid in cash. Of course, then, I found my credit cards right where they belong in a pocket of my purse. He, just like the woman at the drug store, reassured me to stop worrying that I was the customer he was dealing with and it would take as long as it took to complete the purchase while keeping me comfortable.
Third stop, the craft store. My sister was shopping in the fabric department and low and behold, the only person working the department is someone who assisted me a couple years before. From what I was buying at that time, she realized that I must crochet nylon scrubbies and told me how much she loves them. I offered to bring some in for her, that I would not take money, but she should pay it forward sometime or put a little extra in the offering plate at her church. We recognized each other and she again thanked me. Even though I find it difficult to make them anymore, I did have a basket full of them at home and made the same offer again. It just made me feel good to see her again and brighten her day a little.
Fourth and final stop, a late lunch. Our server was looking a little harried and I asked if they had been busy and he said it had been very hectic and lots of grumpy customers. I told him he was lucky then because now he had our two smiling faces to cheer him up. We ended up having a really good time with him and he was ever so very friendly and helpful. We mentioned that we would be coming back for dinner for my sister's birthday with the whole family. He pulled out his phone and made a note to request to work the evening shift that day instead of the usual day shift so that he could serve us again, so I guess he had as much fun as we did.
So this week of Thanksgiving, these are the kind of things I will focus on. These are the kind of things that make this disease bearable, every time I experience what I call "random acts of kindness."
Sunday, November 15, 2015
Knocked Out by a Simple Cold
Every winter, for as long back as I can remember, I have ended up with a heavy duty case of bronchitis. I catch a cold, it becomes bronchitis. Just the way I work. I have become one of those obnoxious people who go to extremes to prevent it. I use the antiseptic wipes in stores to clean my cart. If they don't provide them, I use hand sanitizer gel to clean it. I put on a face mask in doctors' waiting rooms. After all, there are sick people there. On the other hand, I return the favor, if I am sick with a cold and need to visit a doctor's office, I wear a mask since I don't want to spread it to anyone else. I avoid shaking hands during cold and flu season when at all possible. I avoid crowded places, which I now do anyway because of the FTD. I needed to do these things when I was dealing with chemo treatments a few years back and have just stuck with the whole rigmarole. And, yes, I get my flu shot religiously. I do not understand why anyone would not now that they do not use a live virus in the serum. But that's just me...
Last week, my husband and I visited a store, then decided to have dinner at a very popular restaurant. Sure enough, three days later, I had come down with a cold. It is almost gone and I seem to have avoided it turning into bronchitis. (Knock on wood here.) I am very happy about that and am praying that it doesn't continue to linger.
Reading posts from others dealing with FTD, I have often seen them talking about how any little illness can throw them for a loop. That made sense to me, since we tend to be weary a lot of the time and other illnesses will make you feel that way as well. Reading about it and experiencing it are two very different things.
This cold wiped me out, sapped all my energy and made me miserable. As I have mentioned many times, I have a chronic headache, similar to a migraine, constantly. When you add sinus congestion into the mix, it becomes massive. I have spent a week not wanting to do anything at all. I have not even wanted to read, the one pleasurable thing that I can still do. When I don't read, that is a huge sign that I am sick.
I know this is probably ending up to be a very boring post. I'm sure many of you are saying something like "What a wimp. So she has a cold. Big deal!" I totally agree with you. That's how I felt all week as well. Then I spoke with a few people with different chronic illnesses and discovered that they experience the same thing. It seems when your body is constantly under attack from a chronic illness, it doesn't have many reserves left to fight something as simple as a common cold. It makes total sense and I don't know why I had not thought of it before.
When we were dining at the restaurant, low and behold, who gets seated right next to us? My ex-boss and her husband. Yes, the ex-boss who decided I could no longer work for her because of my FTD. (She was probably right, I just believe she handled the situation in a horribly nasty way.) At the restaurant, she tried to ignore me, but I am the kind of person who doesn't deal with things that way. Kill 'em with kindness. It usually shifts that awkward feeling from me back to the one who should be feeling that way and makes me the bigger person anyway. So, on our way out, I stopped by their table and exchanged "pleasantries" with them. Can you guess who I blame for giving me the cold? You got it!!!
Last week, my husband and I visited a store, then decided to have dinner at a very popular restaurant. Sure enough, three days later, I had come down with a cold. It is almost gone and I seem to have avoided it turning into bronchitis. (Knock on wood here.) I am very happy about that and am praying that it doesn't continue to linger.
Reading posts from others dealing with FTD, I have often seen them talking about how any little illness can throw them for a loop. That made sense to me, since we tend to be weary a lot of the time and other illnesses will make you feel that way as well. Reading about it and experiencing it are two very different things.
This cold wiped me out, sapped all my energy and made me miserable. As I have mentioned many times, I have a chronic headache, similar to a migraine, constantly. When you add sinus congestion into the mix, it becomes massive. I have spent a week not wanting to do anything at all. I have not even wanted to read, the one pleasurable thing that I can still do. When I don't read, that is a huge sign that I am sick.
I know this is probably ending up to be a very boring post. I'm sure many of you are saying something like "What a wimp. So she has a cold. Big deal!" I totally agree with you. That's how I felt all week as well. Then I spoke with a few people with different chronic illnesses and discovered that they experience the same thing. It seems when your body is constantly under attack from a chronic illness, it doesn't have many reserves left to fight something as simple as a common cold. It makes total sense and I don't know why I had not thought of it before.
When we were dining at the restaurant, low and behold, who gets seated right next to us? My ex-boss and her husband. Yes, the ex-boss who decided I could no longer work for her because of my FTD. (She was probably right, I just believe she handled the situation in a horribly nasty way.) At the restaurant, she tried to ignore me, but I am the kind of person who doesn't deal with things that way. Kill 'em with kindness. It usually shifts that awkward feeling from me back to the one who should be feeling that way and makes me the bigger person anyway. So, on our way out, I stopped by their table and exchanged "pleasantries" with them. Can you guess who I blame for giving me the cold? You got it!!!
Sunday, November 8, 2015
No Need to Hide FTD
I am learning, slowly, but I am finally learning. Having FTD is nothing to be ashamed of. It is not something I brought on myself or came down with in a dirty way. After all, it is FTD, not STD.
I am finally learning that it is okay to tell people that I have it. Of course most have absolutely no idea what it is, so what I say is "Please bear with me, I have a rare form of dementia and I need your patience and tolerance." This is usually enough, and I am reassured that it is quite alright and I am doing fine. Once in a while, I will see that dreaded look of pity, but most often, it just causes the person to slow down, to listen more closely when I am stuttering, and patiently explaining something for the third time. The interesting thing that I have noted is that young people are much less likely to understand. I am guessing it is because they are young and still feeling immortal. I refuse to believe that it is that they don't care.
Many people have referred me to the site http://www.theaftd.org/life-with-ftd/resources/awareness-cards Here, you have access to several varieties of business card size awareness cards that you can give to someone when you are trying to deal with them. The ones for the caregivers to give to people when I am acting strangely and embarrassing them are probably a good thing. However, the ones that say "I have FTD..." would make me feel weird handing them out. If I get to the point that I cannot talk very well at all, then I will use something like these cards. While I still have a voice, I think it is better for me to just tell them.
A few weeks ago, I was in a restaurant with my husband and our daughter. This was a restaurant we have dined in a few times because it is near our daughter's home. Driving in, we noticed that something was being built in an adjoining lot. After the hostess seated us, I asked her what was being built and she told me it was to be a hotel and what brand it was. We had a wonderful dinner, great service, great food and a great visit with our daughter. When we were leaving, the hostess wished us a good night. Then, I asked the hostess what was being built next door. When I saw the expression on her face, I thought "Uh-oh, now what did I do." I finally said "I am guessing I already asked you this." She acknowledged that was true. So I just asked "And what did you tell me?" She answered again about the hotel and the weird looks continued. So I apologized and explained like I said above, "I have a rare form of dementia and sometimes can't remember." I don't think I will ever forget her answer again. It is to be a Drury Inn, that is now locked into my memory.
It used to be that I would have been horror stricken I had done something like that, but I have gotten over it and just tell them about my FTD. Of course, those times when I say something and get a flabbergasted look back and cannot remember for the life of me what I said that might have been offensive, I don't say anything at all. I guess that is where the cards for the caregiver to hand them would work well. These instances kind of "freak me out." I usually end up just looking back at them with a puzzled look, because either I don't think what I said should have been offensive or I just cannot figure out what I said at all. Occasions like this literally wear me out. I get angry at myself because I did it again, plus I feel guilty and the strain of trying to figure out just what I did is exhausting.
Sometimes, I think I should get a T-shirt that says "No, I'm not stupid... I have FTD." Then I wouldn't have to say a word, just point to my shirt.
I am finally learning that it is okay to tell people that I have it. Of course most have absolutely no idea what it is, so what I say is "Please bear with me, I have a rare form of dementia and I need your patience and tolerance." This is usually enough, and I am reassured that it is quite alright and I am doing fine. Once in a while, I will see that dreaded look of pity, but most often, it just causes the person to slow down, to listen more closely when I am stuttering, and patiently explaining something for the third time. The interesting thing that I have noted is that young people are much less likely to understand. I am guessing it is because they are young and still feeling immortal. I refuse to believe that it is that they don't care.
Many people have referred me to the site http://www.theaftd.org/life-with-ftd/resources/awareness-cards Here, you have access to several varieties of business card size awareness cards that you can give to someone when you are trying to deal with them. The ones for the caregivers to give to people when I am acting strangely and embarrassing them are probably a good thing. However, the ones that say "I have FTD..." would make me feel weird handing them out. If I get to the point that I cannot talk very well at all, then I will use something like these cards. While I still have a voice, I think it is better for me to just tell them.
A few weeks ago, I was in a restaurant with my husband and our daughter. This was a restaurant we have dined in a few times because it is near our daughter's home. Driving in, we noticed that something was being built in an adjoining lot. After the hostess seated us, I asked her what was being built and she told me it was to be a hotel and what brand it was. We had a wonderful dinner, great service, great food and a great visit with our daughter. When we were leaving, the hostess wished us a good night. Then, I asked the hostess what was being built next door. When I saw the expression on her face, I thought "Uh-oh, now what did I do." I finally said "I am guessing I already asked you this." She acknowledged that was true. So I just asked "And what did you tell me?" She answered again about the hotel and the weird looks continued. So I apologized and explained like I said above, "I have a rare form of dementia and sometimes can't remember." I don't think I will ever forget her answer again. It is to be a Drury Inn, that is now locked into my memory.
It used to be that I would have been horror stricken I had done something like that, but I have gotten over it and just tell them about my FTD. Of course, those times when I say something and get a flabbergasted look back and cannot remember for the life of me what I said that might have been offensive, I don't say anything at all. I guess that is where the cards for the caregiver to hand them would work well. These instances kind of "freak me out." I usually end up just looking back at them with a puzzled look, because either I don't think what I said should have been offensive or I just cannot figure out what I said at all. Occasions like this literally wear me out. I get angry at myself because I did it again, plus I feel guilty and the strain of trying to figure out just what I did is exhausting.
Sometimes, I think I should get a T-shirt that says "No, I'm not stupid... I have FTD." Then I wouldn't have to say a word, just point to my shirt.
Sunday, November 1, 2015
FTD... Freeing The Demon
Some days, I feel extremely stressed and angry. I would think this is pretty normal for anyone dealing with FTD. Some days, my almost constant FTD headache is worse than others and is definitely worse on the days that I am feeling stressed and angry. The disease just plain sucks, as I have probably said before.
I have been trying to figure out why some days are worse than others. It is pretty easy to see how the stress and anger would go hand in hand. If I am more stressed, it would certainly be easier to become angry, even if I am just angry that I have to feel stressed that day. Of course the reverse would be true as well. I think anger probably stresses anyone, FTD or not.
I have posted many times about how those of us with FTD can only handle one thing at a time. If I am trying to read, don't interrupt me to ask a question unless absolutely necessary. If I am cooking, don't start talking to be about anything. Don't even ask me (at least not more than once) if I need any help. Don't ask me if I want you to set the table, just do it! I could go on and on with examples, but I am sure everyone gets the general idea.
What most people don't get, and I just figured it out recently, is too many questions is just the same as trying to focus on too many things. If you come to me to ask a question, once I have given you my answer, it is time to drop it! If you keep going, giving me several options of how else it could be or keep telling me why you think your way is best, I am going to snap. I guarantee it. Once I answer a question, I am done with it. If you truly did not want my opinion, why ask me and then try to convince me otherwise.
The other factor is that I am not usually sitting around just waiting to be asked a question or given information about things that I don't care or need to know about (i.e. sports). Stop and think about it. I am fortunate enough to still be able read, which I celebrate often in these blogs. It does, however, keep getting more difficult. Some times I need to reread a page a few times to understand what I am reading, or go back a few chapters to try to remember why such and such is happening now. This can be stressful, but if I am sitting in a quiet room by myself, I can handle it and still enjoy the reading. However, if I am sitting on the sofa and someone else is watching television, it becomes a problem. I usually do pretty well at blocking out the noise of the tv, but if someone starts commenting on what is on the tv, it is an entirely different situation. Now I actually have 3 things going on... reading, blocking out the tv noise, and having to listen to conversation. Another example that pops to mind is that if I have been brave enough to face shopping and I find something I want to buy, I don't need anyone picking up something else and saying "maybe you like this one better" "or are you sure the color is right?" If I am brave enough to face a store, I want in and out quickly. Find what I want and get out. That is more important to me than dithering over which one is the most perfect. A little bit perfect is just fine.
Today, I was unloading trick or treat bags. We usually get around 20 costumed visitors, so I made up 30 identical bags. That way, I would not have to deal with kids grabbing things out of my basket or asking for a particular kind of candy they can see, because that caused a lot of stress last year. It worked perfectly! Well, it worked perfectly because we only had one kid show up. He was cute enough to make up for not having any more... the cutest little blue furry dinosaur ever!!! Anyway, today I decided I should separate everything out of the treat bags. I was happy, sitting on the sofa, making piles of the different items from the bags.
Earlier in the day, I had asked my husband if he could redo the list of my medications that I carry in my wallet. I wanted it smaller so that it would fit better. He came back three times, interrupting my task to show the results to me. Each time, it was to show me an example of what he thought would be better. When I was not completely happy, he tried to convince me that his way was better. When I again explained what I wanted, he insisted on explaining to me why he did it his way. After the third time, I told him exactly what to do to make it the way I originally asked for it. Yes, he made the mistake of saying just one more thing. I started yelling! Was he to blame? Not really, he was only trying to make it perfect (the hazard of living with a perfectionist" for me. The problem was that he wasn't really listening to me as to exactly what I wanted... instead, he was trying to figure out what he thought I should want. All out of pure love. Was I to blame? Somewhat, I guess. I should have taken a few deep breaths before I snapped, but FTD does not allow me to do that. There is no filter between brain and mouth. What I think, I spit out. Sometimes I think FTD stands for "freeing the demon" because that darned irritable demon keeps popping out of me!
It is is difficult, even for me, as well as my loved ones, to realize that even one task that involves multiple steps is way too much for me to handle. What I was doing, sorting out the candy, should not have been a major project and wouldn't have been pre-FTD. I would have been able to be doing a couple other things at the same time, no problem. Unfortunately, it doesn't work that way anymore and is not going to go away or get better. I think my loved ones forget that. They see me having a decent day, accomplishing some things and smiling, and think that today will be different for my brain. I wish it did work that way...
I have been trying to figure out why some days are worse than others. It is pretty easy to see how the stress and anger would go hand in hand. If I am more stressed, it would certainly be easier to become angry, even if I am just angry that I have to feel stressed that day. Of course the reverse would be true as well. I think anger probably stresses anyone, FTD or not.
I have posted many times about how those of us with FTD can only handle one thing at a time. If I am trying to read, don't interrupt me to ask a question unless absolutely necessary. If I am cooking, don't start talking to be about anything. Don't even ask me (at least not more than once) if I need any help. Don't ask me if I want you to set the table, just do it! I could go on and on with examples, but I am sure everyone gets the general idea.
What most people don't get, and I just figured it out recently, is too many questions is just the same as trying to focus on too many things. If you come to me to ask a question, once I have given you my answer, it is time to drop it! If you keep going, giving me several options of how else it could be or keep telling me why you think your way is best, I am going to snap. I guarantee it. Once I answer a question, I am done with it. If you truly did not want my opinion, why ask me and then try to convince me otherwise.
The other factor is that I am not usually sitting around just waiting to be asked a question or given information about things that I don't care or need to know about (i.e. sports). Stop and think about it. I am fortunate enough to still be able read, which I celebrate often in these blogs. It does, however, keep getting more difficult. Some times I need to reread a page a few times to understand what I am reading, or go back a few chapters to try to remember why such and such is happening now. This can be stressful, but if I am sitting in a quiet room by myself, I can handle it and still enjoy the reading. However, if I am sitting on the sofa and someone else is watching television, it becomes a problem. I usually do pretty well at blocking out the noise of the tv, but if someone starts commenting on what is on the tv, it is an entirely different situation. Now I actually have 3 things going on... reading, blocking out the tv noise, and having to listen to conversation. Another example that pops to mind is that if I have been brave enough to face shopping and I find something I want to buy, I don't need anyone picking up something else and saying "maybe you like this one better" "or are you sure the color is right?" If I am brave enough to face a store, I want in and out quickly. Find what I want and get out. That is more important to me than dithering over which one is the most perfect. A little bit perfect is just fine.
Today, I was unloading trick or treat bags. We usually get around 20 costumed visitors, so I made up 30 identical bags. That way, I would not have to deal with kids grabbing things out of my basket or asking for a particular kind of candy they can see, because that caused a lot of stress last year. It worked perfectly! Well, it worked perfectly because we only had one kid show up. He was cute enough to make up for not having any more... the cutest little blue furry dinosaur ever!!! Anyway, today I decided I should separate everything out of the treat bags. I was happy, sitting on the sofa, making piles of the different items from the bags.
Earlier in the day, I had asked my husband if he could redo the list of my medications that I carry in my wallet. I wanted it smaller so that it would fit better. He came back three times, interrupting my task to show the results to me. Each time, it was to show me an example of what he thought would be better. When I was not completely happy, he tried to convince me that his way was better. When I again explained what I wanted, he insisted on explaining to me why he did it his way. After the third time, I told him exactly what to do to make it the way I originally asked for it. Yes, he made the mistake of saying just one more thing. I started yelling! Was he to blame? Not really, he was only trying to make it perfect (the hazard of living with a perfectionist" for me. The problem was that he wasn't really listening to me as to exactly what I wanted... instead, he was trying to figure out what he thought I should want. All out of pure love. Was I to blame? Somewhat, I guess. I should have taken a few deep breaths before I snapped, but FTD does not allow me to do that. There is no filter between brain and mouth. What I think, I spit out. Sometimes I think FTD stands for "freeing the demon" because that darned irritable demon keeps popping out of me!
It is is difficult, even for me, as well as my loved ones, to realize that even one task that involves multiple steps is way too much for me to handle. What I was doing, sorting out the candy, should not have been a major project and wouldn't have been pre-FTD. I would have been able to be doing a couple other things at the same time, no problem. Unfortunately, it doesn't work that way anymore and is not going to go away or get better. I think my loved ones forget that. They see me having a decent day, accomplishing some things and smiling, and think that today will be different for my brain. I wish it did work that way...
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