The Caregiver’s Brain

I read over my last comment and realize how self-centered it sounds, but I needed to get some things off my chest. That doesn't mean I'm totally miserable or pity myself for what my husband is going through. I'm a homebody by nature, so I'm more content than some would be to just hunker down. I need to work on making myself get out more. I, too, find a trip to the grocery store enough excitement for one day or a couple of hours spent with a good friend. There are so many in much, much worse situations than mine, and I'm grateful for the life I've had and still have. My husband is a good, kind man, even if he can't remember my birthday or his grandson's name. But despite the gratitude there are times when negativity takes over and has to go somewhere--like to this forum. A friend once said, Patience is a virtue. The only virtue.

What everyone says here is so meaningful and it's a little scary too. Feeling at peace with the circumstances you can't change is a great coping mechanism, if nothing else, but it also sounds like surrender. Maybe I'm still in the resistance stage, churning inside because my life has become so circumscribed. My brother died a couple of years ago at 86. (I'm eleven years younger than he.) Now that my husband has dementia, I realize that my brother did too but no one in the family mentioned it. When my sister-in-law went off on trips to Croatia or the Caribbean, I was a bit miffed because I thought she was abandoning her responsibility. I'd go spend those days when she was gone with my brother and we had many heart-felt, deep conversations for which I'm extremely grateful, but I soon realized just how difficult it was to care for someone in his condition. He had other problems as well, heart disease and brain injury. I understand why my sister-in-law had to take what seemed to me at the time self-indulgent vacations. If I could afford it and had someone to stay with my husband, I'd do the same thing. I don't want to give up my life to stay home with a partner who can no longer carry on a genuine conversation and repeats the same things endlessly until I think I'll go mad. These comments from loving spouses make me feel guilty, which I'm prone to do anyway. I keep getting advice to take care of myself as well as my husband, but how exactly is one supposed to do that when the greatest freedom is taking the dog for a walk? I didn't understand why my sister-in-law was bitter and often angry. She never failed in her care giving but it was clear that she wasn't happy. My husband and I are at what appears to be the beginning of a slow decline. He's been losing ground for perhaps five years or so and got a diagnosis of dementia and Alzheimer's two years ago. He denies having any problem at all, is losing his hearing again (his hearing aids no longer work and he refuses to do anything about it), and I feel like a dog left all day on a chain. I hate the way this sounds but it's the truth, something I value more and more the older I get. A year ago I was diagnosed with an ascending aortic aneurysm. Not the clock is ticking for me too and I want a life while I can still have one. I'd never leave my husband and intend to care for him for as long as it takes, but this is just about the hardest thing I've ever done, and I thought getting a PhD as a single mother with three kids was a challenge.

Hi Pamela! I feel the same way. I try to do things to fill my day - of course some house cleaning, yard work, cooking meals, time to exercise, talk with friends or family on the phone, and of course with my husband. He naps in the morning so I have some time to myself and he goes to bed by 8:30 so I have some evening time to myself as well. I do my grocery and just about all shopping I need to do online. I like scary movies and will watch one at night. Or maybe a comedian show. Facebook to look at what family has posted and of course those adorable animal videos. Play outside with the dog. If I fill my day enough I don't miss the life I expected to have. My health has taken some serious hits, so I have to contend with that as well, and even if my husband could do more, I can't do as much as I could before. I do get angry from time to time that my life is so limited now and that I've been relegated to this caretaker role, but I've kind of given up and succumbed to the phrase "it is what it is." And I try to remember that in the whole scheme of things, I'm pretty blessed. If you can get some help a couple days a week, you could get out and about a bit. I know what you mean about the conversations though, some days I'm patient enough to tolerate the repetition and questions, other days I just don't say much. I spoke with a memory care professional who gave me a lot of resources so I can plan for all the different scenarios that I might face. And she said to never say never because there could be a point where he has to go into a memory care facility and you might even want to end the marriage if there is really nothing left of the man you married. We have to be realistic. Some days I just need some wine to make it better. And our dog really is a lifesaver. I don't know if I could make it without her to talk to and play with, etc.
So don't feel guilty at all, it's perfectly natural. We're still hanging in there doing what we need to do. If sometimes we feel a little pissy about it, we're allowed. Who wouldn't.

Hi Pamela! I feel the same way. I try to do things to fill my day - of course some house cleaning, yard work, cooking meals, time to exercise, talk with friends or family on the phone, and of course with my husband. He naps in the morning so I have some time to myself and he goes to bed by 8:30 so I have some evening time to myself as well. I do my grocery and just about all shopping I need to do online. I like scary movies and will watch one at night. Or maybe a comedian show. Facebook to look at what family has posted and of course those adorable animal videos. Play outside with the dog. If I fill my day enough I don't miss the life I expected to have. My health has taken some serious hits, so I have to contend with that as well, and even if my husband could do more, I can't do as much as I could before. I do get angry from time to time that my life is so limited now and that I've been relegated to this caretaker role, but I've kind of given up and succumbed to the phrase "it is what it is." And I try to remember that in the whole scheme of things, I'm pretty blessed. If you can get some help a couple days a week, you could get out and about a bit. I know what you mean about the conversations though, some days I'm patient enough to tolerate the repetition and questions, other days I just don't say much. I spoke with a memory care professional who gave me a lot of resources so I can plan for all the different scenarios that I might face. And she said to never say never because there could be a point where he has to go into a memory care facility and you might even want to end the marriage if there is really nothing left of the man you married. We have to be realistic. Some days I just need some wine to make it better. And our dog really is a lifesaver. I don't know if I could make it without her to talk to and play with, etc.
So don't feel guilty at all, it's perfectly natural. We're still hanging in there doing what we need to do. If sometimes we feel a little pissy about it, we're allowed. Who wouldn't.

Thank you for your insight. I have been in this for almost three years now and I have found myself not as panic striken as before and wondering why. I am still trying to plan trips and travel and go places that we have enjoyed but the effort to do so is getting to be harder than the pleasure those activities produce and our life seems to be slowing down. My husband is 82 and I am 74, in not great health so I am now seeing the end of our lives and realize I want to take the years slower with calm instead of breakneck fun. I miss what was, but am finally starting to enjoy where we are in life. I am thankful for that before the real hardships start