The Caregiver’s Brain

Wish you were my neighbor so we could get together for a glass of wine. Other than the dog as we had to say goodbye to ours two years ago you described my life perfectly.

Thank you for your heartfelt post and sharing your journey. I too am approaching 10 years with the decline of my husband, although the first two were spent in frustration wondering “ what the heck is going on?” , without any real diagnosis - I think we both were in denial. I too am finding that I am more at peace with the situation in general as time has marched on. I used to get so sad when I would see other couples, many much older than I, having engaged, fun conversations in restaurants, planning activities together, while I am sitting with my dear spouse who struggles with the most basic conversation and activity. The Lewy Body dementia with Parkinson’s has impacted both mental and physical aspects so his mobility is limited, his voice is thready and hard to understand at times. As it has become more and more challenging for us to go places our world has gotten smaller. It is is easier and more beneficial to enjoy the simple things at home together, and when we do go out, I no longer feel the pain I did at seeing other couples living what appears to me to be “full and happy lives”. I can just appreciate that they have that time together and I pray that they know how blessed they are.
Overall, my depression is less than it was in the early years about our situation, even as the situation has slowly become much worse. I guess that is the peace of acceptance? I do find that I want to find some kind of balance, where I take some time and have freedom to do things that I would like to do in my life while I still can, and also be here and be fully present for him. I know I am missing out on many of the things that I would choose to do if he didn’t have this horrible health situation. His decline is so slow, I don’t want to “wait” to live MY life and then find out that I waited to long, and am unable to physically or mentally do the things that I wanted to do. Trying to do trips with him now, is frankly more work than it is worth for me. Any type of air travel would be arduous and stressful. I don’t even know if he would be able to enjoy it, it would also be very tiring for him, and let’s be honest, he wouldn’t remember anything from the trip, so what would be the point? I also wonder if it is easier for me to take advantage of this time, before he gets worse, for me to do some trips and activities on my own. As he declines, it will only get harder for me to be able to get time away and find respite care for him. It’s hard to know what to do and how to balance my own self-care and life goals with his needs. I don’t know if anyone has all the answers, but if you do, please let me know!

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.

Me too!

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.

Sorry for this belated reply, pamela 78; but I am fairly new to this post.

Like you, my days are numbered (statistically, my lifespan has been shortened by 10 years by RA and I am already 76-years old).

My immobile 83-year-old husband has Alzheimer, vascular dementia, and Lewy Body with Parkinsonian factors; and he is in hospice. So, my idea of relaxation these days is going to the dentist. (I spent an hour and a-half in the chair this morning for a new crown. It felt like a spa treatment.)

And like you, I find that caregiving for my husband is the hardest (and most thankless thing) I have ever done: He has five children from a previous marriage, and they are jet-setting around the world while my husband is dying. (His older son just spent a week in Kaui--after spending a week in Mexico and a month in Province earlier this year); and his older daughter is going to Tuscany for two weeks next week, etc.) while I caregive--which makes the three-year, three-hour round trip to Berkeley from Davis, California to complete my B.A. a piece of cake not mention completing my law degree while caring for my quadriplegic husband (first, and the love of my life), or 42-years of practicing law while raising three children.)

Love and Inner Peace to You,
George's Wife

Hi Lina XYL,

You are doing God's work but you are human; so, you are entitled to feel "a little pissy."

If you are religious, you can ask God for forgiveness. That's what I do all the time because there are moments when I am a raging idiot: How can I be so heartless as to scream to my poor 83-year old husband, who has Alzheimer, vascular dementia and Lewy Body with Parkinsonian symptoms? Simple answer: I am human.

Love,
George's Wife

P.S. George's excuse for being mean to me is because he is "sick and is dying." My excuse for losing it at times is being I am sick, too, and it feels like he killing me. (Everyone is telling me that I need to place him in a memory care facility.)

If we outlive our spouses, you, pamela78 (and Bill?) need to get together to split a case of wine--or champagne.

Your comment "I do think it’s stages of grief we are dealing with and accepting what we cannot change helps us focus on the time we have left..." really resonated with me. When my long-time next door neighbor lost her husband after many years of decline, and I asked how she was doing, she said exactly the same thing - "I am really doing okay - lonely sometimes, feel like I have done my grieving bit-by-bit as he left me. Now I feel like he is at peace and I can rest." She was his sole caregiver, with occasional help from her son and daughter-in-law, for 10 years.
Now, 10 years later and coming up on her 90th birthday, she is living in a senior complex with many friends, still playing cards, quilting and active in her church. She is one of my role models!