I am literally shaking as I am writing this. I just spent more than ten minutes trying to remember how to get to my blog site to write a new entry. I kept going over Facebook, every which way, trying to remember. It took me that long to realize it wasn't on Facebook, that it was a separate app.
I am hoping that this is due to the fact that I finally gave up my 20-year-old Motorola flip phone. Yes, I have joined at least the 20th century, maybe even the early 21st, that is if I ever figure out how to use it. I told them I needed a dumb phone, not a smart phone, or at least a smart phone designed for dumb people. So far, I have learned how to make calls, send and receive messages (kind of, and I can't figure out how to delete them).
Hopefully, because my brain is sort of fried from the phone since yesterday afternoon when I picked it up, that is why I am so confused today. Oh, and I must have kind of figured out Facebook on the phone, because I somehow loaded it three times! I am going to have to stay at the AFTD Conference in LA for an extra day so my daughter can straighten it out and maybe, just maybe, teach me how do work it. I have it on "Easy Mode" but even that seems to be beyond my abilities. Damned FTD!!!
I am faced with making another decision to make a leap. We have an area rug in our family room which is an extension of our kitchen. I have those rubberized pads under it to keep it down, but that is no longer enough. I have been tripping over it and falling a few times a week. You would have been amazed a couple days ago. I was getting several things out of the refrigerator and then stepped back, tripping on the edge of the rug. I don't know how I did it, but I twisted enough to land on my butt and did not spill or drop a single thing! That year of gymnastics I took 62 years ago finally paid off. Right, keep telling yourself that, Cindy! I was lucky, because I did whack my head on a small sofa and had a heck of a neck and headache for a couple days, but it is fine now.
The leap I am talking about is about what to do about the flooring. I have come up with so many possibilities that I can hardly think about it anymore. It's not easy since it is really two rooms totally connected as though it was one. I guess I will have to break down and have a flooring sales person come out and see what all is possible. Either that, or just glue the area rug to the floor. That sounds like a solution for an FTD mind.
The increase in the number of falls has not been limited to the area rug. I have difficulty with any small difference in the walking surface. What I am talking about are things like a 1" doorstep or a small height variation in the sidewalk or any surface. You would think ramps would be a good solution, but those are often even worse for me. If all ramps were built with a constant degree of incline it would most likely be fine. Unfortunately though, nearly every ramp has occasional adjustment in angle. I cannot see or sense those changes and it ends up like the edge of the area rug. I don't see it, so my brain and feet do not know to adjust and I trip and/or fall.
Until recently, most of my falls were on stairs. Once I had a stair lift chair installed, the falls were greatly reduced. It bothers me greatly that my deteriorating brain has now found other ways to trip me up.
It is not unusual for me to trip over something and fall, then get back up and trip over the exact same thing and fall again because I had no clue what I had tripped over. It is actually comical, yet frustrating, to me that when people observe me fall the first time, they run to me and offer to help and are quite sympathetic. Then, when I fall the second time, they turn their backs and walk away, mumbling things like I am an idiot or that I am a drunk.
It is frustrating because, in addition to using the stairlift, when I started using a cane, it helped immensely. I hate to think that I am going to need to take it a step further with a better walking aid. As many times as I have recommended to others that it is time to switch to a walker, I have a lot of resistance to that option for myself. Then again, it took me over 30 years to upgrade my phone. The sales people were amazed it still worked!
I do still see my geriatric/dementia psychologist once a month. I think maybe it is time to discuss this with her so she can get help me over the resistance I have to a walker. I really, really, don't know what I would do without this woman. I wish everyone with FTD could find a therapist like her.
On a much more positive note. The AFTD's Educational Conference is scheduled for Friday, May 3rd, in Los Angeles. It is not too late to register. For more information, please visit the AFTD's website, www.theAFTD.org.
This will be the fourth conference I have attended. As soon as it is over, I will be looking forward to the next. There is a lot to learn at the conference. They bring in many experts who present all the latest information available on the disease and research going on, as well as ways to live with FTD. Just as importantly, at least to me, is the opportunity to meet with so many other people who have FTD and caregivers as well. It also turns out that some of us with FTD really know how to party!
Don't tell anyone, but it is a month away and I have already started packing!
Sunday, March 31, 2019
Saturday, March 23, 2019
To Serve or Not To Serve, that is the question.
You know the expression "Damned if I do, damned if I don't" I am sure. That is exactly what I am feeling today.
Almost exactly a year ago, I was invited to be a member on the Pennsylvania Governor's Task Force on Alzheimer's Disease and Related Dementias. (How is that for a handful of a title?) Of course I was extremely honored. More than that, though, I was thrilled that FTD would be represented on the task force.
I did my best to represent FTD and other dementias against the majority interest of Alzheimer's Disease. It was extremely frustrating, at times, to get them to remember that dementia does not equal Alzheimer's. I am positive that every time I would raise my hand, there were a lot of silent "Here she goes again!" I did not mind that and I did get through to at least the leaders of the task force.
I attended all the meetings that were leading up to the State's annual forum on dementia. The forum was cancelled the day before it was scheduled due to a huge snow storm. It was never rescheduled. Then the governor was reelected and he changed his Secretary of Aging, the department responsible for the task force. I figured that was the end of the task force and our efforts. Fortunately, I assumed incorrectly.
Today, I received an email from the two leaders of the task force saying that we are to meet again on May 9. This really hit me hard. I knew I could not make the May 9 meeting, but also questioned if I could continue on the task force at all. May 9 is during the week following the AFTD Educational Conference. I know that I will probably still not be recovered well enough to be at my best by the 9th. The biggest obstacle to me attending is that after leaving my husband at home after just being gone for four days. With his Alzheimer's Disease, his anxiety level and confusion continue to worsen. Although the person I have staying with him during the conference is the one person he likes to have around, it is still me he wants and relies on. So the May 9th meeting almost certainly out of the question.
Added to that is the frustration of not being heard at the meetings. As often as I reminded them that Alzheimer's is not the only dementia and we must remember the "other" dementias, it was as if I never said anything. I will say that one of the chairs of the task force did understand FTD and the importance of including it. He also stressed the importance of including the "other" dementias. The Secretary of Aging, at that time, also expressed appreciation of my efforts and I was able to have a lengthy conversation with her about FTD.
Right this minute, as I am writing these points, I came to my decision. I am going to reluctantly resign. I will stress to the chairmen of the task force how strongly I feel they need to replace me with another advocate for FTD. If not that, then an advocate for one of the other dementias. As you can imagine, dealing with my FTD and my husband's Alzheimer's is overwhelming at best. I believe that right now, I must put the two of us first in my priorities.
I am proud of my efforts over the past year. I am still, truthfully, left with extreme guilt over this decision. I feel like I am letting all of you and the AFTD down. Hopefully, I did make an impact on at least some of the other members of the task force and they will remember there is more to dementia than Alzheimer's Disease.
Now that I have made my decision, I hope that every one reading this has confidence that I will continue advocating for FTD and those of us affected by it. I will just have to find other ways that I can do it without having to travel out of town in order to be here for my husband. I will certainly continue this blog...
Almost exactly a year ago, I was invited to be a member on the Pennsylvania Governor's Task Force on Alzheimer's Disease and Related Dementias. (How is that for a handful of a title?) Of course I was extremely honored. More than that, though, I was thrilled that FTD would be represented on the task force.
I did my best to represent FTD and other dementias against the majority interest of Alzheimer's Disease. It was extremely frustrating, at times, to get them to remember that dementia does not equal Alzheimer's. I am positive that every time I would raise my hand, there were a lot of silent "Here she goes again!" I did not mind that and I did get through to at least the leaders of the task force.
I attended all the meetings that were leading up to the State's annual forum on dementia. The forum was cancelled the day before it was scheduled due to a huge snow storm. It was never rescheduled. Then the governor was reelected and he changed his Secretary of Aging, the department responsible for the task force. I figured that was the end of the task force and our efforts. Fortunately, I assumed incorrectly.
Today, I received an email from the two leaders of the task force saying that we are to meet again on May 9. This really hit me hard. I knew I could not make the May 9 meeting, but also questioned if I could continue on the task force at all. May 9 is during the week following the AFTD Educational Conference. I know that I will probably still not be recovered well enough to be at my best by the 9th. The biggest obstacle to me attending is that after leaving my husband at home after just being gone for four days. With his Alzheimer's Disease, his anxiety level and confusion continue to worsen. Although the person I have staying with him during the conference is the one person he likes to have around, it is still me he wants and relies on. So the May 9th meeting almost certainly out of the question.
Added to that is the frustration of not being heard at the meetings. As often as I reminded them that Alzheimer's is not the only dementia and we must remember the "other" dementias, it was as if I never said anything. I will say that one of the chairs of the task force did understand FTD and the importance of including it. He also stressed the importance of including the "other" dementias. The Secretary of Aging, at that time, also expressed appreciation of my efforts and I was able to have a lengthy conversation with her about FTD.
Right this minute, as I am writing these points, I came to my decision. I am going to reluctantly resign. I will stress to the chairmen of the task force how strongly I feel they need to replace me with another advocate for FTD. If not that, then an advocate for one of the other dementias. As you can imagine, dealing with my FTD and my husband's Alzheimer's is overwhelming at best. I believe that right now, I must put the two of us first in my priorities.
I am proud of my efforts over the past year. I am still, truthfully, left with extreme guilt over this decision. I feel like I am letting all of you and the AFTD down. Hopefully, I did make an impact on at least some of the other members of the task force and they will remember there is more to dementia than Alzheimer's Disease.
Now that I have made my decision, I hope that every one reading this has confidence that I will continue advocating for FTD and those of us affected by it. I will just have to find other ways that I can do it without having to travel out of town in order to be here for my husband. I will certainly continue this blog...
Sunday, March 17, 2019
In This Together
I truly had no intention of writing a blog today. I felt much too exhausted and could not come up with anything that interested me enough to write about.
To the first part of that statement, my husband's Alzheimer's Disease has taken another turn for the worse. He has been so confused. He can no longer operate the remote control for the Dish network. He was never really good at it, but he seems to just keep pushing buttons out of frustration when he cannot find what he wants. He has found some screens and options deep down in the system that I had never seen before. Some have not been easy to get out of for him. Now, we have come up with a solution that I pull up a program for him from the DVR and he watches it to the end instead of switching between different recordings at his whim. Now, isn't that what being a caregiver is about? Instead of griping about what he is doing, it is so much easier and makes life much happier if we work out a solution to the problem.
Another example is that In addition to having more difficulty doing things, he is forgetting more and more. It breaks my heart every time he asks me what my name is. This morning, he asked me if I was the one who last night solved our problem with the television. No matter how many times I tell him that he and I are the only ones in the house, he still seems to think there are more. He also questions if it is our house and if we live there. We have come up with a solution to the name issue for now. I told him how he used to call me "Kid" early in our marriage because he was ten years older. So far, he gets a big smile on his face when he remembers and calls me "Kid." He also repeatedly wants to compare our wedding rings to assure himself that we are married. He is amazed every time I say that we have been married for 47 years. He does this a LOT, but it does not bother me. I find it sweet. I may have talked about some of this in prior blogs and apologize if I am repeating.
Yes, I realize this blog is about FTD, not Alzheimer's Disease, but it is pretty difficult for me to separate the two just as it is now difficult to separate my role of caregiver from one dealing with FTD. Both are exhausting. I have been getting up more often through the night to check on him which worsens the fatigue I usually feel from my FTD. I do hope that some of my experiences of being his caregiver can provide help to those who are caring for someone with FTD. While the two diseases are quite different, the problems they create are often the very same.
This morning, while eating my breakfast, I had an episode of swallowing difficulty and started choking. He jumped up, filled a glass of water and brought it to me and fussed over me until I could assure him enough that I was okay. He even cleaned up the mess I made from coughing up the food. To me, that is a show of true love.
Now, to the second part of my opening paragraph. Being so tired, nothing had inspired me as a subject for writing today. I was not up to doing any necessary research if I was going to write anything informative about the disease or the symptoms it causes. I was just sitting at the computer, scrolling through the few support groups that I participate in. Unfortunately, I stumbled across a post from the writer of a blog who was criticizing another blogger and the contents of the other's blog itself.
You know, we are all in this together. Those with FTD, those who care for someone with FTD or just those who love someone who has the disease and wants to learn more. In my opinion, blogs are like t.v. shows or movies. If you begin one and it doesn't interest you, stop watching or stop reading the blog. I am sure no one enjoys every one of my blogs and that often times they disagree with what I am saying.
That is the good thing about a blog. It is someone's view on an issue and, often, relaying their experience with the issue. The interpretation of information provided can vary as well. Bottom line, we are all different, have different beliefs and see things differently. If you don't like someone's blog, including my own, stop reading it. Hopefully though, with mine anyway, you will come back to the next one to see if it is of more interest to you.
Personally, my FTD often makes it difficult for me to follow some blogs. I get confused enough with my own! When the writer is particularly verbose (that's a pretty good word for someone with FTD to come up with) or is overly dramatic, I am lost. I prefer reading things that are right to the point or, sometimes even, slap me right upside the head to the point that I say "Why didn't I think of that." To me, writing a blog, is not an exercise in creative writing.
If you ever question something I say in a blog or disagree with me, please feel free to comment. That is a wonderful way to learn and to see things from a different angle. But to see one blogger ripping apart another just does not seem right to me. This is especially true when it is one blogger ripping apart another. It comes across to me as "Nah, nah, nah, nah. My blog's better than your blog." No such thing. Everyone's blog is personal and if they were all the same, who would read them?
Okay, I will climb off my soapbox. The last thing I will say on the subject is that like any other piece of work, a blog is individual and is full of opinions and subjective information. It is fine to disagree with the words or opinions expressed, but it is never okay to verbally assault the writer. I must also explain, that this is not personal and I was not one of the bloggers involved in the incident that upset me enough to write about it.
As I said, we are all in this together and I think we should be supportive of each other, even if we disagree from time to time. Kind of like a family...
To the first part of that statement, my husband's Alzheimer's Disease has taken another turn for the worse. He has been so confused. He can no longer operate the remote control for the Dish network. He was never really good at it, but he seems to just keep pushing buttons out of frustration when he cannot find what he wants. He has found some screens and options deep down in the system that I had never seen before. Some have not been easy to get out of for him. Now, we have come up with a solution that I pull up a program for him from the DVR and he watches it to the end instead of switching between different recordings at his whim. Now, isn't that what being a caregiver is about? Instead of griping about what he is doing, it is so much easier and makes life much happier if we work out a solution to the problem.
Another example is that In addition to having more difficulty doing things, he is forgetting more and more. It breaks my heart every time he asks me what my name is. This morning, he asked me if I was the one who last night solved our problem with the television. No matter how many times I tell him that he and I are the only ones in the house, he still seems to think there are more. He also questions if it is our house and if we live there. We have come up with a solution to the name issue for now. I told him how he used to call me "Kid" early in our marriage because he was ten years older. So far, he gets a big smile on his face when he remembers and calls me "Kid." He also repeatedly wants to compare our wedding rings to assure himself that we are married. He is amazed every time I say that we have been married for 47 years. He does this a LOT, but it does not bother me. I find it sweet. I may have talked about some of this in prior blogs and apologize if I am repeating.
Yes, I realize this blog is about FTD, not Alzheimer's Disease, but it is pretty difficult for me to separate the two just as it is now difficult to separate my role of caregiver from one dealing with FTD. Both are exhausting. I have been getting up more often through the night to check on him which worsens the fatigue I usually feel from my FTD. I do hope that some of my experiences of being his caregiver can provide help to those who are caring for someone with FTD. While the two diseases are quite different, the problems they create are often the very same.
This morning, while eating my breakfast, I had an episode of swallowing difficulty and started choking. He jumped up, filled a glass of water and brought it to me and fussed over me until I could assure him enough that I was okay. He even cleaned up the mess I made from coughing up the food. To me, that is a show of true love.
Now, to the second part of my opening paragraph. Being so tired, nothing had inspired me as a subject for writing today. I was not up to doing any necessary research if I was going to write anything informative about the disease or the symptoms it causes. I was just sitting at the computer, scrolling through the few support groups that I participate in. Unfortunately, I stumbled across a post from the writer of a blog who was criticizing another blogger and the contents of the other's blog itself.
You know, we are all in this together. Those with FTD, those who care for someone with FTD or just those who love someone who has the disease and wants to learn more. In my opinion, blogs are like t.v. shows or movies. If you begin one and it doesn't interest you, stop watching or stop reading the blog. I am sure no one enjoys every one of my blogs and that often times they disagree with what I am saying.
That is the good thing about a blog. It is someone's view on an issue and, often, relaying their experience with the issue. The interpretation of information provided can vary as well. Bottom line, we are all different, have different beliefs and see things differently. If you don't like someone's blog, including my own, stop reading it. Hopefully though, with mine anyway, you will come back to the next one to see if it is of more interest to you.
Personally, my FTD often makes it difficult for me to follow some blogs. I get confused enough with my own! When the writer is particularly verbose (that's a pretty good word for someone with FTD to come up with) or is overly dramatic, I am lost. I prefer reading things that are right to the point or, sometimes even, slap me right upside the head to the point that I say "Why didn't I think of that." To me, writing a blog, is not an exercise in creative writing.
If you ever question something I say in a blog or disagree with me, please feel free to comment. That is a wonderful way to learn and to see things from a different angle. But to see one blogger ripping apart another just does not seem right to me. This is especially true when it is one blogger ripping apart another. It comes across to me as "Nah, nah, nah, nah. My blog's better than your blog." No such thing. Everyone's blog is personal and if they were all the same, who would read them?
Okay, I will climb off my soapbox. The last thing I will say on the subject is that like any other piece of work, a blog is individual and is full of opinions and subjective information. It is fine to disagree with the words or opinions expressed, but it is never okay to verbally assault the writer. I must also explain, that this is not personal and I was not one of the bloggers involved in the incident that upset me enough to write about it.
As I said, we are all in this together and I think we should be supportive of each other, even if we disagree from time to time. Kind of like a family...
Saturday, March 9, 2019
Isolation
Depression has been overwhelming me for the past few days. All I can think of to explain it properly is from the words of Merle Comer and Alzheimer.net. "Nothing prepares you for this disease. No one is prepared for the isolation. Friends disappear because the person they knew is no longer there..."
I have written several times about how those with the disease of Frontotemporal Degeneration become isolated and lonely. Just like most everyone with FTD, I have experienced this many times over. Longtime friends stop returning phone calls. Friends promise to stop and visit but never show. The invitations to events, even family events, stop coming. Either that or they arrive in the mail with a note "We know you cannot attend but wanted you to know that..." In other words, we don't want you there, but would you please send a gift anyway. Messages are not answered, whether on the answering machine or social media.
On one hurtful occasion, I had invited friends over for dinner. We had been talking about Mexican food and I offered to cook up my favorites. We picked a date and time a few days away. I cooked for two days and had the table decorated in a beautiful Mexican theme. You have probably guessed by now, they never showed up. My phone call asking where they were was not answered. Finally, a few hours later, I received a social media message that they were busy elsewhere. I was absolutely devastated and embarrassed. Why I felt embarrassed, I have no idea, but I was.
Over all, though, I think I have dealt with this desertion by our friends and relatives quite well. I concentrated on those who still kept in touch even if they rarely visited. When my husband's Alzheimer's Disease became more noticeable, that group of friends and family dwindled even further. He no longer heard from his best friends. For him, sadly, it didn't affect him because he does not remember who they are anyway.
A few days ago, I was talking to a friend via Facebook messenger. This friend and his wife have been part of our lives since we met through my daughter nearly 15 years ago. We have been through a lot together. Even after they moved about 20 miles away, we still made a point of getting together occasionally. When they would come back to our town, we would often meet up for dinner. I have always supported them, helped them when I could and considered them part of our family.
During our conversation, I said that I hoped the next time they were in town they would stop by. I explained that we could no longer take them to dinner since neither of us can drive, but I offered to fix a meal or dessert and offered that if they picked us up, we could go to a restaurant. His answer was that they do get down here quite often but they wouldn't be stopping by. Then he quickly said that they usually come down in the late afternoon and figured that I was worn out by then. Wow! Could they be any more thoughtful than that? Was I supposed to say "Thank you for thinking of me"? I was very thankful that it was a Facebook chat rather than in person or on the phone because I would have been speechless. I felt the rug had been pulled right out from under me. You know that feeling when it literally feels like your heart drops? I felt that. Most of our "friends" and relatives have not been so open about not caring to spend time with us. They just don't return calls until I finally get the message.
Since my aunt and uncle passed away a year ago, the only family we hear from, in addition to our daughter, is my sister, her husband and my husband's sister. My circle of friends now consists, almost exclusively, of my FTD support group friends.
I do have an older woman who has been cleaning our house for a couple years now. She occasionally takes me to the grocery store and to doctor's appointments, even some that are nearly 100 miles away. She even stops by at least once a week to visit and check on us. When my daughter and I attend the AFTD Education Conference in L.A. in May, she has offered to stay with my husband. I am quite thankful for that since she is the only person he feels comfortable with besides me. Notice that I introduced her here as my friend. She initially was an employee. She still is our house cleaner and I do pay her for that, but she is all anyone could want in a friend. Without her, I would feel totally isolated in our home.
Oops, I forgot one. I recently ran into an old friend and he does call every couple weeks to check in and we do manage to get together every couple months or so. Despite him and the woman I just wrote about, I feel deserted and alone most of the time. I never, ever, believed that this would happen to me.
I go back to the quotation I started with and believe it is correct. People desert those with FTD and other dementias because they do not understand that we are still us. Yes, we act differently now and it may be more difficult to talk with us, but we still have a lot to say. There is no reason to feel awkward to be around us. Even when you don't feel comfortable trying to converse with us, just being there helps. I promise, dementia is not contagious. even though It often feels like that is what people believe.
I have written several times about how those with the disease of Frontotemporal Degeneration become isolated and lonely. Just like most everyone with FTD, I have experienced this many times over. Longtime friends stop returning phone calls. Friends promise to stop and visit but never show. The invitations to events, even family events, stop coming. Either that or they arrive in the mail with a note "We know you cannot attend but wanted you to know that..." In other words, we don't want you there, but would you please send a gift anyway. Messages are not answered, whether on the answering machine or social media.
On one hurtful occasion, I had invited friends over for dinner. We had been talking about Mexican food and I offered to cook up my favorites. We picked a date and time a few days away. I cooked for two days and had the table decorated in a beautiful Mexican theme. You have probably guessed by now, they never showed up. My phone call asking where they were was not answered. Finally, a few hours later, I received a social media message that they were busy elsewhere. I was absolutely devastated and embarrassed. Why I felt embarrassed, I have no idea, but I was.
Over all, though, I think I have dealt with this desertion by our friends and relatives quite well. I concentrated on those who still kept in touch even if they rarely visited. When my husband's Alzheimer's Disease became more noticeable, that group of friends and family dwindled even further. He no longer heard from his best friends. For him, sadly, it didn't affect him because he does not remember who they are anyway.
A few days ago, I was talking to a friend via Facebook messenger. This friend and his wife have been part of our lives since we met through my daughter nearly 15 years ago. We have been through a lot together. Even after they moved about 20 miles away, we still made a point of getting together occasionally. When they would come back to our town, we would often meet up for dinner. I have always supported them, helped them when I could and considered them part of our family.
During our conversation, I said that I hoped the next time they were in town they would stop by. I explained that we could no longer take them to dinner since neither of us can drive, but I offered to fix a meal or dessert and offered that if they picked us up, we could go to a restaurant. His answer was that they do get down here quite often but they wouldn't be stopping by. Then he quickly said that they usually come down in the late afternoon and figured that I was worn out by then. Wow! Could they be any more thoughtful than that? Was I supposed to say "Thank you for thinking of me"? I was very thankful that it was a Facebook chat rather than in person or on the phone because I would have been speechless. I felt the rug had been pulled right out from under me. You know that feeling when it literally feels like your heart drops? I felt that. Most of our "friends" and relatives have not been so open about not caring to spend time with us. They just don't return calls until I finally get the message.
Since my aunt and uncle passed away a year ago, the only family we hear from, in addition to our daughter, is my sister, her husband and my husband's sister. My circle of friends now consists, almost exclusively, of my FTD support group friends.
I do have an older woman who has been cleaning our house for a couple years now. She occasionally takes me to the grocery store and to doctor's appointments, even some that are nearly 100 miles away. She even stops by at least once a week to visit and check on us. When my daughter and I attend the AFTD Education Conference in L.A. in May, she has offered to stay with my husband. I am quite thankful for that since she is the only person he feels comfortable with besides me. Notice that I introduced her here as my friend. She initially was an employee. She still is our house cleaner and I do pay her for that, but she is all anyone could want in a friend. Without her, I would feel totally isolated in our home.
Oops, I forgot one. I recently ran into an old friend and he does call every couple weeks to check in and we do manage to get together every couple months or so. Despite him and the woman I just wrote about, I feel deserted and alone most of the time. I never, ever, believed that this would happen to me.
I go back to the quotation I started with and believe it is correct. People desert those with FTD and other dementias because they do not understand that we are still us. Yes, we act differently now and it may be more difficult to talk with us, but we still have a lot to say. There is no reason to feel awkward to be around us. Even when you don't feel comfortable trying to converse with us, just being there helps. I promise, dementia is not contagious. even though It often feels like that is what people believe.
Saturday, March 2, 2019
Good Days and No So Good Days
There are days and then there are days! Today has been a day!
To begin with, someone whom I have long respected really let me down this week. He sent out an email to everyone in an organization I have been a part of for 15 years. I was greatly shocked and outraged that he was supporting a policy that greatly goes against my beliefs. I am not going into what and why. I only mention it because in the few days since reading his thoughts, I cannot get it out of my mind and how wrong I consider his opinion. I suppose I could confront him about it, but not only would it not do any good, it would just bring more negativity into my life than I need or can handle. I tell you this to explain the state of mind I am in to deal with the past couple days.
Something absolutely wonderful happened, though, on the same day I received his email. A friend, one with FTD, rejoined our support group for those of us with the disease. I met this man and his family last year at the AFTD's Education Conference and really enjoyed getting to know him and his wife. He joined our support group after that conference and was a great member. The best gift he gave us was his wonderful sense of humor. I admired the way he faced the obstacles FTD presents and appreciated how he usually had some good words of advice. A couple months later, he dropped out of the support group so he could better focus on himself, which is what he needed at the time. I am thrilled that he is back and that he still manages to brighten my day.
On the other hand there is no doubt that FTD sucks. During the past week, my symptoms have worsened and I have developed a couple new ones. I have been absolutely, and completely, exhausted. I believe I would be able to sleep through an entire two or three days, if only I could. I had a relatively long and demanding Monday. Tuesday was a bit better, but not by much. The next three days, I have been worthless due to exhaustion. I have been unable to accomplish anything. One of the days, I swore I was too tired to chew my dinner.
Part of the demand, of course, is my husband's Alzheimer's Disease. My sleep gets disrupted at least a couple times each night when he needs me. 3 hours + 3 hours + 2 hours does not equal 8 hours when it comes to sleep. I have been needing to nap during his afternoon naps. It helps a bit, at least giving me enough energy to fix our dinner, and that is about it. Whether when I start getting full nights of sleep, the symptoms will bounce back a bit, I have no clue. I have been stumbling, losing my balance and falling even while using my cane.
A more troublesome symptom is that I am beginning to have difficulty speaking. In order for my husband to understand what I am saying, I have to speak slowly and very clearly. Right now, I cannot seem to speak clearly, not enunciating well enough for him to understand. This frustrates me, not only realizing that I am having this difficulty, but because I feel so awful that I cannot communicate with him as well as I would like. I am getting fairly decent at charades though, if anyone wants to play.
Today is a good day in that I only needed to get up once to help him. I heard strange noises coming from his room and went in there to see what was going on. It was him making these sounds in his sleep and one of his legs was rigid and hanging out of the bed in a strange position. I rubbed his leg for a few minutes to relax it, then was able to move it back up onto the bed and under the covers. I leaned over and kissed him like I always do when he needs me through the night. God bless this man, he opened his eyes and said "thank you" in a very sincere tone of voice. I'm not sure if he was thanking me for bringing his leg up or for the kiss, but I'll take it either way. He was also able to get himself up and fed in the morning without waking me. I actually slept until 1:00 in the afternoon. I was amazed that he managed to keep quiet enough for this to happen. The look of satisfaction on his face was priceless and a reminder of the way we used to take care of each other.
The greatness of this event is hugely overshadowed by some news I received. A very dear friend of mine, who also has FTD, told me today that she was waiting for a bed in an assisted living facility. This in itself is not a bad thing and since she has been living alone, it is probably a wise choice made by her and her son. The negative side of this is that her symptoms are progressing to the point that this move has become needed.
Since my FTD, this horrible disease has claimed many people I had become friends with. Most of them online, but some I have met in person as well. When you suffer from a life-ending disease, this certainly comes with no surprise. It is inevitable. When I realized that my friend's disease had worsened to the point that she is making this move, it upset me. I have not yet met my friend in person. We have become this close just from being friends online. It is like we are soul sisters because we had so much in common.
Since last year's conference, I have been looking forward to meeting her in person at this year's. It is much closer to her home and she and her son were planning to attend. We had great plans and were looking forward to a great time together. She told me today that they are not going to be able to be at the conference. I am so very disappointed. I am also extremely sad because she is one of the first of my contemporaries (the ones who were diagnosed right around the same time I was) who has reached a milestone such as this. So, today, I am sad.
Then, I remember her words of praise and gratefulness for the support and care her son provides. I understand what she means because my daughter is so important to me as well. Her words were "Yes, we are blessed." We are, no doubt about that. She also has a beautiful (inside and out) granddaughter who brightens her days.
Tomorrow, this is what I will remember. I will be so thankful that she has her son and granddaughter and that they have found a good assisted living arrangement for her. She will still be the awesome friend and soul sister who shares the same sense of humor I have. We will still trust each other with our deepest secrets. It doesn't matter that we will not meet in person in a couple months because we already know each other so thoroughly. I love this woman and am happy that she will be protected and cared for in her new home.
Yes, tomorrow will be a much better day.
To begin with, someone whom I have long respected really let me down this week. He sent out an email to everyone in an organization I have been a part of for 15 years. I was greatly shocked and outraged that he was supporting a policy that greatly goes against my beliefs. I am not going into what and why. I only mention it because in the few days since reading his thoughts, I cannot get it out of my mind and how wrong I consider his opinion. I suppose I could confront him about it, but not only would it not do any good, it would just bring more negativity into my life than I need or can handle. I tell you this to explain the state of mind I am in to deal with the past couple days.
Something absolutely wonderful happened, though, on the same day I received his email. A friend, one with FTD, rejoined our support group for those of us with the disease. I met this man and his family last year at the AFTD's Education Conference and really enjoyed getting to know him and his wife. He joined our support group after that conference and was a great member. The best gift he gave us was his wonderful sense of humor. I admired the way he faced the obstacles FTD presents and appreciated how he usually had some good words of advice. A couple months later, he dropped out of the support group so he could better focus on himself, which is what he needed at the time. I am thrilled that he is back and that he still manages to brighten my day.
On the other hand there is no doubt that FTD sucks. During the past week, my symptoms have worsened and I have developed a couple new ones. I have been absolutely, and completely, exhausted. I believe I would be able to sleep through an entire two or three days, if only I could. I had a relatively long and demanding Monday. Tuesday was a bit better, but not by much. The next three days, I have been worthless due to exhaustion. I have been unable to accomplish anything. One of the days, I swore I was too tired to chew my dinner.
Part of the demand, of course, is my husband's Alzheimer's Disease. My sleep gets disrupted at least a couple times each night when he needs me. 3 hours + 3 hours + 2 hours does not equal 8 hours when it comes to sleep. I have been needing to nap during his afternoon naps. It helps a bit, at least giving me enough energy to fix our dinner, and that is about it. Whether when I start getting full nights of sleep, the symptoms will bounce back a bit, I have no clue. I have been stumbling, losing my balance and falling even while using my cane.
A more troublesome symptom is that I am beginning to have difficulty speaking. In order for my husband to understand what I am saying, I have to speak slowly and very clearly. Right now, I cannot seem to speak clearly, not enunciating well enough for him to understand. This frustrates me, not only realizing that I am having this difficulty, but because I feel so awful that I cannot communicate with him as well as I would like. I am getting fairly decent at charades though, if anyone wants to play.
Today is a good day in that I only needed to get up once to help him. I heard strange noises coming from his room and went in there to see what was going on. It was him making these sounds in his sleep and one of his legs was rigid and hanging out of the bed in a strange position. I rubbed his leg for a few minutes to relax it, then was able to move it back up onto the bed and under the covers. I leaned over and kissed him like I always do when he needs me through the night. God bless this man, he opened his eyes and said "thank you" in a very sincere tone of voice. I'm not sure if he was thanking me for bringing his leg up or for the kiss, but I'll take it either way. He was also able to get himself up and fed in the morning without waking me. I actually slept until 1:00 in the afternoon. I was amazed that he managed to keep quiet enough for this to happen. The look of satisfaction on his face was priceless and a reminder of the way we used to take care of each other.
The greatness of this event is hugely overshadowed by some news I received. A very dear friend of mine, who also has FTD, told me today that she was waiting for a bed in an assisted living facility. This in itself is not a bad thing and since she has been living alone, it is probably a wise choice made by her and her son. The negative side of this is that her symptoms are progressing to the point that this move has become needed.
Since my FTD, this horrible disease has claimed many people I had become friends with. Most of them online, but some I have met in person as well. When you suffer from a life-ending disease, this certainly comes with no surprise. It is inevitable. When I realized that my friend's disease had worsened to the point that she is making this move, it upset me. I have not yet met my friend in person. We have become this close just from being friends online. It is like we are soul sisters because we had so much in common.
Since last year's conference, I have been looking forward to meeting her in person at this year's. It is much closer to her home and she and her son were planning to attend. We had great plans and were looking forward to a great time together. She told me today that they are not going to be able to be at the conference. I am so very disappointed. I am also extremely sad because she is one of the first of my contemporaries (the ones who were diagnosed right around the same time I was) who has reached a milestone such as this. So, today, I am sad.
Then, I remember her words of praise and gratefulness for the support and care her son provides. I understand what she means because my daughter is so important to me as well. Her words were "Yes, we are blessed." We are, no doubt about that. She also has a beautiful (inside and out) granddaughter who brightens her days.
Tomorrow, this is what I will remember. I will be so thankful that she has her son and granddaughter and that they have found a good assisted living arrangement for her. She will still be the awesome friend and soul sister who shares the same sense of humor I have. We will still trust each other with our deepest secrets. It doesn't matter that we will not meet in person in a couple months because we already know each other so thoroughly. I love this woman and am happy that she will be protected and cared for in her new home.
Yes, tomorrow will be a much better day.
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