This week, I have been wearing my caregiver hat. It is a difficult one to wear because it doesn't fit me very well. FTD seems to have caused it to misshapen.
I was a caregiver for my grandmother, my mother and my aunt. I did a pretty decent job of it, at least I think I did. I had more patience with them than I knew I was capable of showing. I still say that what worked was mostly common sense, not being afraid to try new things, treating them with respect and loving them.
Now, I am the primary caregiver for my husband who has been diagnosed with dementia, probably Alzheimer's. Yes, it is a totally different disease, but many of the difficulties are the same. The problem with caring for my husband is that I am dealing with my own FTD. He had been my primary caregiver for several years, but things have changed drastically. He still tries to do as much for me as he can. I honestly cannot say which one of us has the worst end of it.
I'm going to go back to what I said I thought was involved in my past caregiver roles. Common sense was a huge part of it. That involved coming up with creative solutions to problems as they made themselves known. Moving unwearable or non-seasonal clothing out of the closet helped make them dressing themselves easier. Using elastic shoelaces made putting on shoes easy as well. Getting a simple clock that showed the time clearly helped their comfort level. Nightlights were put all around the house, especially the ones that kick on as someone moves about. Unfortunately, I no longer have much common sense. Sitting down and coming up with solutions can be pure frustration. Explaining the solutions to him can be nearly impossible. I know what the solution that I came up with is, but have no ability to explain it to him. In addition, he lacks the ability to understand when I do explain it.
Not being afraid to try new things? Doesn't that apply to just about everything in life? Unfortunately, life with FTD doesn't allow me to have much flexibility. I need my routines. I am most comfortable when my schedule is the same each day. Trying new things requires the ability to, not only come up with something new that might work, but figuring out how to do them. A simple disruption to my schedule, such as a doctor's appointment, exhausts me. It is not so much physical exhaustion but rather a mental exhaustion. My brain just won't work for the rest of the day.
Treating him with respect can be really difficult for me. Like I said, FTD has stolen nearly all of my patience and ability to cope with any changes to my own routine. My husband's dementia makes it very difficult for him to comprehend just about anything. This, of course, makes it necessary for me to explain the same thing repeatedly. By the third time, I am screaming it. If a fourth time is needed, forget it. You can then find me sitting somewhere rocking my body to try to calm myself. This is usually paired with my repeating over and over to myself, "I can't do this, I can't do this..."
A good example happened yesterday. I mentioned to him that my friend in Philadelphia posted on Facebook that because of snow, rain, ice and wind, there were so many accidents that it took her, instead of the usual 20-30 minutes. 2 1/2 hours to drive home from work. I then went in to take a nap which is unusual for me, I will admit. When I got up, he asked me if I was lying down to put ice on the spot on my chest that the doctor had frozen off. I was totally confused and asked where he got that idea. He answered that I had said something about ice before I went in. It took me a while to figure that one out. The most frustrating part is that when I explained the non-connection to ice on the roads in Philly, he spent the next hour trying to convince me that it was me who was confused.
Loving him is the easiest part. I have had to walk away from "friends" who keep telling me that I should leave him. Uh, what? I answer with "Remember that part about 'in sickness and in health'?" I will admit that when I end up yelling at him because my patience is non-existent, I feel intense guilt. Even though it is instinctual and I cannot stop my reaction, I feel horrible that I could scream at someone I love so much. But, no, leaving him is not something I would do. I have heard many who are caregivers to someone with FTD relaying a similar story.
With FTD, I need to be surrounded by calmness. Alzheimer's does not allow my husband to be calm. He is on two medications to reduce his agitation, but they are not a cure-all. He tends to obsess about things. For instance, earlier today we heard a loud noise, as if something had fallen. I did a walk around the house and did not see anything. I even went through the basement and garage. I figured that as long as I did not find anything in a dangerous condition, we would eventually find it. He could not do that. He kept walked around obsessively looking in every nook and cranny. After about an hour, he found that a closet rod had fallen. Unfortunately, he had no desire to try to fix it. He suggested that he doesn't wear any of that stuff anyway so we should just toss it all. I had to point out to him that many of his shirts were hanging there, along with his dress clothes. I still could not convince him that we should not just throw them all out but I will prevent it.
I finally convinced him that we would deal with it later and closed the closet door. Now, later today or tomorrow, I will have to find the strength to go in and move all the clothes. Then, the tough part. I will have to try to figure out what broke or caused it to fall, then come up with a remedy. In addition, he will be there, pacing around, fussing about what we should do.
A year or so ago, when he discovered the rod was down, he would have immediately moved the clothes to another closet, looked at the bar to figure out what broke and would fix it. What would have been a 30-minute task back then will now be a two day ordeal. It is disruptions to my normal day, like this one, that throw me off course.
Our circumstance definitely proves that FTD and Alzheimer's are not the same thing. It also proves that being a care partner is not an easy role, no matter what your situation and circumstances are. I have always had great respect for caregivers and their role, but that respect has grown tremendously over the past year.
I have also learned that I am not alone in my circumstance. There are many who have FTD that are also serving as the full time caregiver for a loved one. There are also many caregivers that are caring for more than one loved one at the same time. Time to quote Tiny Tim... "God bless us, everyone."
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