What do I do when I'm looking at a steep decline in my husband's abilities to care for himself?
He's 71. with an ALZ diagnosis. Three months ago, he would collect tshirt, socks, "special underpants," and go take his shower. Today he had trouble making the shower work, and has to be reminded not to take three tshirts. He's having some trouble putting on his shirt. Three months ago, I was pretty well adjusted to all the things I had to do for him, and grateful for the things he could do for himself. Now I'm starting to feel that more and more of my time will be devoted to standing beside him overseeing almost everything that he does. Yes, I know, I'm a lazy b17ch. No argument there! I know your loved one can't even feed herself, and I have nothing to complain about. Any advice on how to adjust my attitude to this new reality? Since the diagnosis in 2013, I've been saying, "It's all right as long as it doesn't get any worse." I can see that period coming to an end. I am crabbier and resentful and sorry for myself. I get out twice a week to volunteer work. I can take him along to most social outings, including the monthly "ladies' dinner." His friend takes him to the barroom once a month for my caregivers meeting. "I can't complain but sometimes I still do." I'm also getting much more forgetful. I can lose anything within 30 seconds. I passed a dementia test with flying colors a year ago, so I'm pretty sure it's stress. Waaah! Help! I have actually cried a few times lately, which is not a bad thing.
So sorry your hubby is going through this, and so are you. Hubby is so young. And this isn't the retirement that you both had planned on. You have a right to complain !!
Thank goodness you are doing volunteer work, it's a feel-good moment that can last while :)
We as caregivers each have or had our own battles with different medical conditions of love ones that overwhelmed our life. Some people love being caregivers.... for myself I just wasn't made for doing hands-on caregiving. Nothing wrong with that. We find we are stronger in other aspects of caregiving. For me it was logistics. I left the hands-ons to the experts that were hired to care for my Dad, and they did a wonderful job :)
I accompanied my husband on his dementia journey for 10 years. Of course I cried. I complained to myself. I resented the loss of a partner. It helped me a lot to remember that I was doing the caregiving by choice. I could at any time place him in a suitable care center. No one was making me do this.
Also getting help was essential. For a couple of years my husband attended an Adult Day Health Center. That was good for both of us! When that was no longer possible, we had a PCA come in several hours a day. She got him groomed and dressed and toileted in the morning, presented him to me (in my office -- I worked at home) all ready for the day, and then she got his breakfast. Awesome!
You can also have a bath aide come in a few times a week to help with the shower.
Don't worry about your own brain cells. You will remarkably go back to normal when this is all behind you.
Come here to vent often. We do understand!
I can ignore lots of verbal nonsense and repeated questions, because I know they are part of the disease. One thing that does get to me is being "unjustly accused." We have lived here for 30 years, but most days - towards evening, usually - he will start asking when we are going home. I answer that I have lived here for 30 years, and as far as I know, he has too. Then he says, "I don't mind moving, but I hate it when you move me from here to there to some other place without telling me." He is so resentful, and I haven't moved him even once! I understand, but I still have trouble accepting it.
Oh crap. I just remembered what someone said in my caregivers group. When her dad got upset about having to give up driving, the social worker told them to say, "Yes, I miss it too." I have to loosen my attachment to facts and express empathy for his sense of dislocation and powerlessness.
There is a part of me that takes pride in figuring out how to make situations better. I feel capable and in some control of an uncontrollable situation. But there's a part that feels totally helpless, and RESENTS having to make changes in my behavior. That part wants to let everything collapse into chaos, so someone else will have to take over. All my other parts can clearly see that I would not be happy with the results!
Thanks, folks!