It is about time that I write another blog entry dedicated to the caregivers. The role of caregiver or care partner is one of the most difficult jobs there is. You need to have the utmost patience, a mind reading ability, the muscles of a body builder and the ability to go without sleep. It is often a thankless job as well. I have extreme admiration for most caregivers. I will not address the caregivers that I find do not care or are totally lacking because their numbers are not nearly as large as the good ones.
I would like to address several issues. Some are questions that I am often asked by caregivers and some are just things that I truly wish could be handled differently.
One of my pet peeves and a habit that many caregivers need to break is the use of the words "won't", "insists on doing", "refuses to do" and any variation on them. It can be something as extreme as "s/he won't swallow her food, just hoards it in her mouth." It is not that s/he won't swallow, it is that s/he cannot swallow. It isn't always something as extreme as that example. It can be something like "s/he refuses to brush his teeth. It is most likely that he cannot brush his teeth because he does not remember that he should or how to do it. Some caregivers will put notes on the bathroom mirror to remind their loved one to brush their teeth. That is great in concept and probably makes a difference in the early stages. Unfortunately, eventually, they will not understand why the note is there, what it says or how they are supposed to do that anyway.
The FTD brain works much differently than a healthy brain. It reaches the point that "brush your teeth" is too overwhelming. It can only handle, "find your toothbrush, put a small dab of toothpaste on your toothbrush, wet the toothbrush, etc." It is not only overwhelming, but it can be extremely frustrating as well. When the FTD brain gets frustrated, lashing out often follows. It can be yelling, throwing the toothbrush away or just refusing to do anything. It is not that they don't want to brush their teeth because they probably feel a little furry, they just can't. The same principals apply to trying to get them to bathe or shower, make their bed or just about any activity you want to encourage them to do. Sometimes, it might help if you stand and brush your teeth at the same time so they can mimic what you are doing. I hate it when someone compares taking care of someone with FTD to caring for a child, but I am going to. It does help to remember how you would teach a child to do whatever it is you are wanting them to do. Please, though, do not talk down to the FTD'er or treat them like a child!
I remember, way back in my high school days, an assignment given to us by my favorite English teacher. She would have us write a description of common items and to describe it as though someone came from outerspace and had absolutely no clue about what it is. The one I remember being the most difficult was "water." I would often think about that when I was acting as a caregiver for the family members who dealt with FTD before I did.
So often, caregivers do not totally understand that too many things going on quickly become overwhelming and prevent the brain to do much of anything. I call it "going into the spin cycle" because, to me, it feels like my brain is spinning but can't find a place to stop where anything makes sense anymore. Music, pets, children, television, lawn mowers, anything that makes noise or anything that draws the eyes away from what they are trying to focus on are all things that a normal brain takes for granted and just blocks out. Temperatures can do it too, like if they are sitting near the air flow from the air conditioner or heat vent. The FTD brain cannot block the distractions out. I know of one caregiver who would put her mother in a chair in front of the television and leave her there most of the day. She truly thought that entertaining her mother with the television was a good thing that she was doing. She would also open a window next to her mothers so she could "get some fresh air." After a couple hours, her mother would become very agitated and start yelling. She didn't know how to explain that the television was overwhelming her and she could not handle it. It was exacerbated by the noises and commotion coming in through the window.
Caregivers often complain because their loved one acts inappropriately at restaurants or in other social situations. They may even accuse their loved one of trying to get attention. Assuming that the loved one is not taken to restaurants several times a week, the odds are not very good that they will remember how to act in a restaurant. It is a strange place, with a lot of strangers around, perhaps music playing in the background and other people talking. Add in having to make a choice from the menu and having to talk to strangers. I don't say that you shouldn't go to restaurants. My husband and I go out at least once a week. We do not, though, go to "fancy" restaurants anymore where I might feel embarrassed. Yesterday, I was at a restaurant with three friends. I was on the far side of a booth, so the waitress had handed me a bowl of soup. I joined in to the conversation and totally forgot I was holding the soup. It ended up splashed all over my clean white shirt. Of course it was tomato based so it showed up quite well. We were in a family-style restaurant and it was no big deal. The waitress grabbed a stack of napkins and offered to help. The three friends with me all know that I have FTD and care enough to have learned enough about it to realize that it wasn't a "stupid" thing that I did. It was just one of those times that boils down to the "one thing at a time" concept. I should have set down the soup before trying to talk to someone, but my brain was not going to realize that. It really helps if the caregiver pays attention to the one with FTD. If that had happened to me in a fine dining restaurant, I would have been mortified. If I had been out with my husband, he would probably have helped me set down the bowl as soon as I had accepted it from the waitress.
Another complaint that crops up a lot is communication difficulties. I am not qualified to talk about the FTD'ers who have aphasia and have severe difficulties speaking because I have not reached that point and the family members I cared for prior to my diagnosis did not have it either. I do have trouble speaking, though, and it gets much worse when I am stressed. I can not get words out and it sounds like I am stuttering and I will leave out words. Instead of saying "close the door for me" it will come out as "cl, cl, cl, cl, close d, d, d, d, door." I also forget words and it can take me a while to remember the word or find one to substitute. When someone tries to fill in the words for me, it does not help. It actually makes it worse because I become more frustrated. Odds are that the other person comes up with a totally different take on what I am trying to say. It also distracts me enough that I can not focus on what I am trying to say. It is not unusual, when someone is "trying to help" that I will just quit trying. It is interesting to me that when I do that, I make a motion like I am trying to erase a blackboard, or whiteboard for those not old enough to remember blackboards. I even remember when the blackboards were actually made from slate!
I am afraid I have not provided many answers here. The bottom line is to keep it simple, break things down into steps (the one thing at a time concept) and do not expect more than your loved one can offer. Also, it is important to observe what is happening so that you may understand why they are reacting the way they are or why they are lashing out. Oh, and try to find that patience of Job.
It is also a good idea to discuss any new developments with the doctor. They may indicate something to the doctor that we would not think of. One of the biggies is UTI's. I did not understand why people on the support groups would quickly ask if they had checked their loved one for a urinary tract infection. It seemed like that was a stretch at best. Then I read something that changed my mind. It explained to me that older people and people with chronic diseases have much lower resistance to infections. The infections also have more impact on their bodies. If their body is busy fighting off an infection, especially a UTI, it is depleting their ability to work properly in other areas. It can increase just about any symptom of FTD, increase agitation adding to the stress of the disease. It can also cause just enough discomfort to distract their brain from functioning as well as it had been. The good news is that once the UTI is cleared up, they most often get back to where they were before the infection. It also helps that you can now buy urine test strips in just about any pharmacy so you may be able to avoid trips to the doctor.
Also, respite care is vital for the caregiver. You cannot do it all for very long until you become worthless to yourself, the one you are caring for and everyone else in your life. It can be difficult to ask for or to accept help. You must force yourself to do it. Ask friends to come sit with your loved one for an afternoon so you can go have a massage or just sit in the park. Ask family members to come stay with them for a weekend. Check out respite care that may be available in your area at nursing home or other places. Adult day care is often an answer as well.
This had not crossed my mind when I started this blog entry, but did just I was wrapping it up. Here is the link to a brochure I wrote, called "Coping with FTD." It contains some pretty basic and common sense tips that I have after being the caregiver for family members who had FTD and now with me having it as well. I hope it helps.
www.theaftd.org/wp-content/uploads/2016/12/CindyODell-CopingWithFTD-Dec2016.pdf
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