It has been a while since I wrote a blog entry aimed more at the caregivers. This past week, several things have happened that triggered the feeling that I have been over this before, so why does it keep happening?
The first big one is that those of us with FTD do not deliberately do things to drive the caregivers or others out of their minds. It might seem that way, but a lot of the things we do are not done intentionally. This occurs more and more as the disease progresses. For instance, if the one with FTD repeatedly asks "When is dinner"? While this can be extremely frustrating to the one being asked, it is most likely not deliberate. They actually do not remember that they had asked three minutes ago or elsed remember they asked, but cannot remember the answer you gave.
If the one with FTD has just eaten breakfast and had a cup of coffee and fifteen minutes later wants a cup of coffee, it is most likely they don't remember drinking the coffee or are actually thirsty. My immediate reaction is, give them another cup of coffee. If too much regular coffee makes them jittery or something, switch to decaf, make their coffee weaker than you normally make it or make it half a cup of coffee and half a cup of water. You could also try a substitute like "How about a big glass of ice water, would that work?" If they are asking for breakfast, they most likely don't remember eating it or are having cravings which are common with FTD. Some days you would need to hide all the sweet or carb-loaded foods from me, because if I see it, I will eat it. Try a strategy such as, "Yes, we just had breakfast, how about we go and do this and then it will be time to eat again." or "You already ate breakfast, how about eating this banana to tide you over till lunch."
You get the idea. Truly, it is not limited to eating. We don't urinate into the closet intentionally, we don't smear poop around the bathroom intentionally, we don't pace around the house intentionally. Why does someone with FTD do these things? Who knows? It makes sense to them at the time, but if you ask them why, they probably will have no clue. Fighting the repeated action will only lead to frustration for the caregiver and the one you are caring for.
Another issue that I cannot stress enough is the "one thing at a time" principal. If the one with FTD is doing something, this is not the time to ask a question. You will most likely get a blank stare, a snippy response or both. When someone asks me a question while I am doing something, it wipes both of them out of my mind. I will be totally confused, probably a blank stare on my face, and shake my head. I wouldn't be ignoring you, it's just that I heard "wah, wah, wah, wah" like the talk on a Charlie Brown television show. It works better if you say, "may I interupt you for a second" then make sure I am looking at you and engaged. Then ask the question.
In the same vein, do not expect me to do a task that involves multiple steps. Perhaps try to ask me to do one step at a time or help me come up with a way to remember all the steps. Perhaps you could write a brief list, then suggest I cross off each step as I do it. If I am folding some laundry, don't ask me what if I want spaghetti for dinner. You will get the same blank stare I talked about before. It is just too overwhelming. I like to describe it as my brain going into a spin and nothing clicks into place. I, literally, can no longer focus on anything.
If I ask a question, give me just the bit of information I am needing. If I ask you "What time is it?" please do not answer with something like "It's 3:30, don't you remember you just watched Judge Judy? She is always on at 3:00." You may as well tell me "Okay, Cindy's brain, start spinning." Then two minutes later, I will probably ask you what time it is again because I got nothing out of your answer. If you say that it is 3:30, leave it at that. I may still forget and ask you again, but maybe it will take 5 minutes instead of 2, but if we're lucky, it will sink in and stay for a while.
This is such a difficult concept for many caregivers to grasp because it doesn't make sense to them. To a normal brain, that wasn't two things, you were just answering the question and making it a little clearer. In a brain that is being attacked by FTD, it cannot work that way. Brain cells are being attacked and killed off constantly and once gone, they never come back.
I remind myself every day to be thankful for the things I can still do, not worry about the ones that I cannot. For instance, I am thankful every day that I can still read. I may be reading books that are probably on an 8th or 9th grade level, but I am still reading and that is something to be thankful for. I am able, in the evening, to go into my darkened and quiet bedroom and read for a couple hours. It calms me enough that I am able to sleep. On the other hand, if I tried to read a book like I used to read, one that actually takes a brain that still works like mine used to, I would become more agitated and frustrated and would have great difficulty going to sleep. Would I be embarrassed if those who don't know me well realized the kind of books I am reading? Yes, I would be absolutely horrified because above all, I need to retain my dignity.
That leads to a final thought. Please, please, please never say to someone "Oh, s/he has dementia, s/he is too stupid to understand that" or bump the person with FTD aside and say "You can't do that." You can say, "S/he may have difficulty with that could you explain it again?" or for the second example, "I can help you do that if you would like." Yes, doing it the first way would probably save you some time, but not reacting like that probably saves your loved one some dignity.
Also, a reminder that caregivers may get some benefit and understanding by reading my publication "Coping With FTD" that can be found in my blog entry dated Nov. 12 of 2016.
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