A few days ago, a friend responded to one of my Facebook posts with "...you are a saint for being both a caregiver and an FTD patient." My response was "Not even close, all I can do is keep plugging along." I really appreciated his comment, though, because he was recognizing how difficult some days are for me, but I truly don't believe I deserve praise for what I do.
Plugging along... Isn't that we all do, including those of us with FTD or any other dementia and those caring for someone who has it?
There are days, many days in fact, that I am just utterly and completely exhausted. Some of those days, the exhaustion is more related to my FTD worsening and others are due to trying to care for my husband and his Alzheimer's Disease. Then there are the days when he and I are both having bad dementia days. Those days, I tend to fall apart and end up in bed at night, praying that he will sleep at least a few hours so I can get some sleep.
The nights when he is more confused that usual, he tends to wake me up more than once an hour. Most times he wants to know what day it is, whether he got his pills that day, wants to complain because "they" haven't fed me in days, if I am the one who takes care of him, who else is living here and the list goes on and on. All I can do is answer his questions, reassure him, tell him I love him and that he needs more sleep. I tuck him back into bed and pray for him to be able to sleep.
The days that are the worst for me and my FTD can be many. The day after he has a restless night, my FTD symptoms are exaggerated due to my being exhausted. Other days, like everyone else with FTD, new symptoms pop up for no rhyme nor reason.
One of the first symptoms I noticed about my FTD was falling and losing my balance. That continued for several years but then lessened in severity. I would still lose my balance, but using a cane was preventing me from falling. I was encouraged by this. I knew that my FTD was not "getting better" but was hopeful that these symptoms had run their course, making way for new ones. I know, I know, wishful thinking. This past month, the falling and loss of balance has come back in full force. When you add to that, my continued weakness in my arms and legs, it has become much more stressful and difficult in caring for my husband.
When he needs assistance in standing or moving in his bed, I just do not have enough strength to help him. Of course, being aware of this, I have made compensations. I purchased a lift chair for him and have taught him ways to get out of the other furniture. He does really well on bar stools. They are the right height for him to sit right onto them. It is also easier for him to get back up because he does not need to lift himself, just step down. I have him using the kitchen bar stools with padded seats and backs, along with good supportive wooden arms. Since he still refuses to use his cane, I have taught him how to go from place to place by holding on to solid objects.
I have found that is the best thing for us. We improvise... we keepplugging along. Well, I guess I improvise and he tries to understand what I am suggesting we try. We manage, though.
Amazingly enough, when I am having a really bad day due to my FTD, he seems to sense it. He can't really do anything to help me or to help with things around the house, but he actually shows compassion and asks frequently if I am doing okay and do I need anything. When I say "no" I also make sure I thank him for asking and tell him how much I appreciate it.
Sometimes, on difficult days such as this, when it is bedtime, I will tell him I really, really need to get a good night's sleep and ask him to be more involved in getting himself ready for bed as well. It actually works some nights. I will wake up around 9 a.m. and realize I have slept through the night because he has as well. When this happens, I thank him profusely and tell him how much good it did for me to sleep through the night. Does he understand what he did for me? I kind of doubt it, but praise of any kind (honest praise, no false or condescending praise) is a good thing for anyone. When he doesn't do things correctly or is in a stubborn mood, I try my best to not criticize him. I make sure to thank him for trying. Always trying to keep it positive for both of us.
Sleep is an essential part of living with FTD. When I am tired, my symptoms worsen. Sometimes I bounce back after succeeding in getting a full night's sleep. Other times I don't. Swallowing is a good example. When I am tired, I have more trouble swallowing. Unfortunately, that does not improve after I get some rest.
Speaking of which, I just have to write about something that happens a lot. My husband has difficulty understanding words when others are speaking, he hears the noise the words make, but interpreting just what words they are is a problem, just as it can be for many of us with FTD. Because of my swallowing issues, I have to constantly clear my throat, I would guess dozens of times a day, my husband asks, "What did you say?" He is not able to comprehend that the noise I am making is not words. Fortunately, while this should make me quite sad, I also find humor in it. Because I do, it is one thing that does not tax my patience level. I have not yet snapped at him or asked him to stop asking that. Thank God for finding humor in things.
Plugging along... that's what we do. I have given you examples of how I plug along while being a caregiver. How is it possible, though, to separate and identify the daily issues of his dementia from my own? It seems there is a lot of information out there with suggestions of ways to cope with being a caregiver. Not so much for those of us with FTD. We are portrayed as the "bad guy" in the stories. Oh, the dastardly things we do to make the life of the caregiver so much worse. Many times, it is implied that these things are done deliberately by us.
To me, and I am told by many others with FTD, these stories and complaints leave a feeling of despair and a strong sense of no longer being loved. The worst for me, is the feeling that many caregivers and those who advise caregivers no longer see us as valuable. We read and hear often enough of all the things we can no longer do and all the inconveniences we cause the caregivers. So often, that we can feel totally worthless and incapable, or undeserving, of being loved.
I am not saying that these caregivers and advisers all truly believe these things or think they are suggesting them at all. I have to believe that they don't realize how we are interpreting their words as something negative. One thing that comes up often is that we do things deliberately. I can say with confidence that most of us with FTD are not capable of intentionally doing many of the things we do that frustrate the caregivers. Most, if not all, of us are incapable of sitting down and thinking "What can I do to irritate my caregiver today?" Even if we were capable of thinking that way, how could we understand and figure out how to enact it? Along the same lines, something that can can be interpreted that it is deliberate is when we are told more than one thing at a time. We quickly develop overload and can not understand any of what has been said.
For instance, if someone were to tell me to gather up the trash, take it out to the can and wheel the can out to the street. I am still thinking "Gather up the trash? Okay, how do I do that. I don't remember, do I bring the wastebaskets to the kitchen and empty them into the bag. Hmm... or do I take the bags to the wastebaskets? I don't remember how I did it the last time. I think I am supposed to bring the wastebaskets to the bag so if it is leaking, I don't make a mess. Oh, wait, is she still talking?" What are the odds that the trash can is going to be taken out to the street without further instructions. It is just not the way our brains work anymore. "One thing at a time" is my mantra.
The role of being a caregiver or being an adviser to caregivers is difficult. There is no doubt about that. Yet, I find myself wanting those writing articles, making speeches and such to recognize that our brains just don't any longer work the way they did pre-FTD and that the "role" of being someone with FTD is difficult, exhausting and depressing just as the role of caregiver is. We also deserve recognition and even deserve some praise for doing as well as we can. I am not asking for an "International FTD Patient Day." I merely want us to feel valuable and loved.
Those of us with FTD just keep plugging along, as best we can, along with the caregivers who are doing the same.
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