What do you do when your caregiver needs you to be a caregiver? It gives a whole new meaning to the term "care partner." When I first found myself in this position, I thought I was the only one. Wow, was I wrong! I have learned that many with FTD are also the primary caregiver for a loved one with a different disease. As you can imagine, this is not easy at all.
I usually write about living with FTD and I guess this still is about that, but let me go back to the beginning. When my symptoms started, my husband was right there to help out and support me. When I could no longer drive, he drove me to work in the morning and returned in the evening for the return trip and never complained about it. He already took care of most financial chores, but he took over all of them with no complaint. He started keeping track of all my prescriptions and filled my daily pillboxes for me so that I did not make mistakes. When I was fired from my job, he was right there with all the moral support I needed. That was six years ago.
As those years went by, I was getting extremely frustrated with him because his support for me was not what it used to be. When things would go wrong, it was always my fault. He either did not recognize his mistakes or was trying to cover for them. I really started resenting him because I was having to do more and more of the day to day chores even though I did not have the energy or even the ability. When I complained enough about how I could not keep up with the housework, he would promise to pitch in and help. When that never happened, he finally agreed to hire someone to help out with that. This was one of the best things he could have done for me.
I started noticing him struggling with not only the tasks he had taken over for me, but others that he had always done. I brushed it aside and figured maybe that is what happened when you hit your mid seventies. (He is 10 years older than I am.) It was finally too much to brush off when he was unwilling to accompany me to a biopsy procedure last year. This would never have happened anytime prior to this during our married life of 40+ years. I discussed this with our doctor and she asked that I accompany him to his next appointment because she had been noticing things as well. You have probably guessed it, she diagnosed 'dementia, probable Alzheimer's'.
I am always trying to educate people about how FTD is different from Alzheimer's. I now realize that, for us, this is probably a very good thing. The differences make it possible for us to work through things. Many of the things that I struggled with, he can still do. The ones he struggled with were things that I am still capable of doing. I became the organizer, scheduling appointments and keeping our calendar straight so we got to where we needed to be when we needed to be there. Those were things that I could still do, as long as I paid strict attention to the details.
The most important thing that he has always done for me is supporting with the behavior part of Behavioral Variant FTD (bvFTD). He could, and still does, calm me down when I get stressed, over tired or start behaving inappropriately. He had learned to ignore the fact that I swore like a sailor and would have frequent meltdowns.
He was uncomfortable with giving up financial responsibilities even though we had a couple instances of him forgetting to pay a bill or two. The money was there, he just forgot. We came up with a compromise and now I open the mail and make it clear to him when something just needs filed or when a bill needs to be paid. He also agreed to not hold the bills until close to their due date, but to pay them as soon as they arrive. I double check later to make sure they have been. With this method, he still is still doing the actual financial tasks but with more confidence. I am not confident that this will work for a long time, but it's good for now and he is giving up responsibility just a bit at a time. He still sets up our pill boxes for the week, but I check them for accuracy afterward. I do not know if he realizes I am doing these things or not, but it is working. I know that one of the worst things about learning to deal with FTD was the feeling of lost dignity. I want to prevent that from happening for him.
Now that I know, and he has finally admitted, that he also has dementia, things are working more smoothly than they were. Now, when he tries to say that I must have mixed things up or made a mistake and I know that I have not, I am better able to deal with it and not have a meltdown because of it. Oh, I do still have meltdowns. It is a wonder there are not holes in the walls and doors. It is a fairly common event for me to be banging my head on the wall or, fortunately, the much softer back of the sofa. I end up pounding the doors out of frustration. At least it is a slapping rather than punching. He is unbelievably calm during times like this and is able to calm me fairly quickly. Yes, I have given myself a lot of headaches and sore hands. Fortunately, these meltdowns are not more than a one or two a week. We have been able to deal with the problem without resorting to any of the medications that many with bvFTD need to take... so far, anyway. I hate taking any more meds than absolutely necessary.
We have elected to not start my husband on the Alzheimer's medications. Being aware that it does nothing to stop the progression of the disease and only helps delay some of the symptoms, we decided that it was not worth the side effects for him. Many of the side effects are things that he could not deal with.
We are coping with managing our two forms of dementia and learning how to deal with it on a day to day basis. Of course it isn't easy, since my FTD changes from day to day. Talking to others with FTD who are also caregivers, he and I are not anything special. It adds more frustration for all of us. As I have talked about many times, FTD steals the filter between brain and mouth, so we struggle with being able to speak and act appropriately. Being a caregiver is one of the most stressful jobs there is and it takes a huge amount of patience. Well, guess what, those of us FTD don't have that anymore. One person who is in my position goes for a lot of walks instead of melting down like I do. Going for walks is not an option for me, but once the weather improves, I will at least be able to go outside. Sitting on the deck in my rocking chair and soaking up some vitamin D is soothing to me. I have also gotten quite good at pacing around the deck. I guess it's a good thing that we have a sizable deck and sturdy enough that my pacing has not worn any paths yet.
Another huge obstacle is the ever present lack of empathy. It is difficult to be sympathetic toward the other person's difficulties coping with their disease when you just don't care. I struggle to remember that his form of dementia is just as frustrating to him as mine is to me. I still don't care very much, but at least I am able to recognize that it is.
We each have a place of our own. I moved to a separate bedroom several years ago so that my sleep disruptions did not keep him awake. I also have my little "office corner" in that room so it is a place where I can retreat. He also has his "man cave" downstairs with his desk and all his "stuff", a comfortable place to sit and a TV to watch. When the day comes that I can no longer read, I will probably have one in my room as well.
Our poor daughter calmly listens to me every evening when she calls. Then she reminds me to breathe and we are usually able to laugh. Some days I feel guilty dumping my problems on her, but she, being the best daughter in the world anyway, insists it is her way of helping. See? Best daughter in the world!
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