During the past couple weeks, I have had to make a couple very difficult financial decisions. This sort of thing is something my husband and I would discuss and come to a mutual decision. Now, I need to make these decisions alone and it frightens me. I often made bad financial decisions, even before FTD, often deferring to my husband's suggestions. Now, here I am, needing to do it alone and it confuses me and leaves me worn out. I had already taken over our day to day financial issues when I realized bills were not being paid. I must say I was lucky and he did not protest at all. In fact, he was very relieved when I offered to do it and admitted that he had been struggling. That was one time that my care giving knowledge did kick in. I offered to do it. I did not say that he could not do it anymore. The sad part is that seven years ago, I had turned this responsibility over to him because it confused me so much.
The more major financial decisions are very difficult, partly because I understand the limitations that FTD causes for me. Fortunately, I took my own advice. I am constantly suggesting to those with FTD and care partners to consult with an elder care attorney. I took my own advice. He is redoing all my official documents: will, living will, financial power of attorney and healthcare power of attorney. We had already, a few years ago, met with this same attorney and he prepared all the same documents for us. The problem is that we both made each other responsible for everything, healthcare decisions, financial decisions and even funeral instructions. It is so important for the care partner to keep up with these type of things.
I mentioned that I was not always the best with financial decisions and have made some very bad ones. Because of that, I have decided that I am going to allow the elder care attorney to control most of our savings. Wow! That's a lot of trust to give someone. I know I cannot trust myself to make good financial decisions and do not want to put that burden on a family member so this was my choice.
Of course, financial decisions are not the only thing that prevents me from being the caregiver I would like to be. I do remember a lot of things from when I was the caregiver for previous family members and I try to use things that worked with them. I do a lot of taking deep breaths before I react and do a lot of retreating into my quiet room to calm myself down for a few minutes. I also, though, sometimes do it right.
My husband, like many people with dementia, no longer wants to shower. This is a man who never skipped a day of taking a lengthy shower. I remind myself that this is okay and not smelling so fresh is not going to kill him... or me. The day before I intend to get him into the shower, in the afternoon when he is most cognizant, I tell him that the next day he needs to shower. The actual shower day, again in the afternoon when he is most aware, I tell him it is time to shower. He still complains, but he does it without resisting. That is at least one thing I get right.
To avoid taking my husband to the grocery store, my sister takes me most Mondays. I never go without a list and it takes me several hours to put it together. All week, I do jot down items as we run out. But on Sundays or Monday mornings, I spend at least two hours putting the list together. Then, in order to keep the shopping trip as short as possible, I rewrite the list in the order of the store. This has really been working well for us and has been making the shopping trips somewhat less stressful.
Unfortunately, the store doesn't keep my FTD difficulties in mind. They are constantly moving things around, but it's been a couple years since they did a major reorganization. When we went to the store last week, I found a disorganized mess. I could have stopped, checked out and gone to a different store but that would not have worked either since being in an unfamiliar store is just as likely to break me. We stuck it out but half-way through the store, I yelled out "Why do they have to move things? I cannot handle moving things!" I did get a lot of stares, but my sister just took it in stride. Grocery shopping is another one of the chores my husband has taken over after my diagnosis that I had to once again start doing it myself.
I also still prepare all our dinners. Fortunately, my husband prefers to graze all day rather than have a true breakfast or lunch, so it is just dinner that I need to prepare. When I cook, I try to make things that we can have for at least two days to cut down on the need to cook every day. Cooking is difficult for me on some days. After I was diagnosed with FTD, he would notice when I was stressed and would often offer to go pick up dinner or he would help me cook something easy. Not only can he no longer drive out to get something, he no longer notices when I am stressed or worn out. If he does notice, he asks me why I get that way.
Again, these are the things I do that are on the positive side as a caregiver. Unfortunately, the anger and frustration of FTD affect me, even in my caregiver role. I lose patience more often than I would like to admit. As always, if I think it, I am most likely to speak it. Yes, I yell even though I know it will do nothing but make situation worse, but it is not something I can always control. The problem is, these are the first things that FTD caused me to do long before he developed dementia. If I couldn't control it before all the added stress of being a caregiver, I sure cannot control it now.
I must add that I do get angry and frustrated that he has a 24/7 caregiver in me and I don't have anyone. I know I can call my sister for most anything, any time, but I try to limit how often I call on her. I do call her when I feel I am at my wit's end. My daughter also calls me every evening to check in on what is going on. She can always get me to laugh about it which helps enormously. I went from having a husband who was always trying to do everything for me, to his not being able to do anything.
I often end up totally and completely exhausted with no desire to do anything. I was that way when I only had my own FTD to deal with. Now, it is multiplied several times over. I will bet that you can tell that today is one of those days. When you combine the days that FTD leaves me without energy to do anything with a day of needing to do everything, it ends up not looking pretty.
This has ended up being more of a look into our personal lives than I had originally intended. I hope I achieved my goal of showing that both sides of the FTD picture can be terrifyingly difficult to handle. This is what I tried to do in last week's blog as well, though some caregivers did not see what I was trying to say.
Even from the beginning of my adventure with FTD, I often said that I could not begin to decide which was worse... being the one with the disease or being the one caring for that person. I knew this going into my FTD challenge from being the caregiver to my grandmother, later my mom and then my aunt before being diagnosed myself. One bit of irony is that I was finally given the diagnosis of FTD right around the time my aunt died. It seems my family just cannot get away from this disease.
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