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The Caregiver’s Brain
Greetings Friends,
I have not posted here in six months. My wife’s dementia has been moving at a snail’s pace. The days, weeks, and months have melded into a fuzzy blob of time, and one day is exactly like all the others.
I am nine and a half years into care giving, and the word “decade” will soon be added to the divisions of time used to describe my ordeal. Despite what I have read on this site over the years, I believed that my stint as a caregiver would not last this long.
I have been locked into care giving for so long now, that time feels like it has stopped. Friends and family are celebrating graduations, getting married, having children and grandchildren, taking vacations, getting new jobs, moving, even retiring; their lives go on and mine has stopped. The more time that passes, the more shocking it is when someone finally deigns to call or visit and update me on their (mostly normal) lives.
Nine-plus years of lost progression is immense. That is enough time for a student to go through medical school or law school. It is enough time for families to grow by multiple children and grandchildren. It is enough time for people to move more than once or twice. Even our cat: She was three and a half years old when this began, and she is thirteen years old now. Friends and family have progressed, scattered, and moved on without us. Sadly, it is also enough time for pictures of my wife and me (before her dementia) to seem nostalgic now.
Surprisingly, I am far less depressed than during my wife’s earlier stages. The simple explanation is that I have finally entered the Acceptance stage of grief. I believe there is more to it – care giving and forgoing my own shallow pursuits in life has rewired my brain. Care giving for nearly a decade is a whole different experience from care giving for a year or two. It is long enough for your expectations and priorities to completely reset.
I am very grateful for this reset in my brain. It may be a survival mechanism; whatever it is, it is a welcome change in me as a care giver. Here are some examples to help you re-frame your ordeal (as I have):
I have friends that visit a certain expensive theme park at least once a year, but usually much more frequently. Their travel stories were always enjoyable; I must admit that I felt a bit of envy and “woe is me” because a trip like that would be impossible with my wife’s condition. I was missing out. Over the past year or so, their stories no longer evoke envy. I am truly happy for them and enjoy their adventure stories more than ever. But I no longer want to go. Seriously – those trips seem trivial to me now, and I would actually RATHER take care of my wife in the comfort of our home. I cannot make sense of my own feelings and how they have changed, but I kid you not.
Similarly, my wife and I visit far fewer sit-in restaurants than before. Dining out was nearly a hobby for us. Any bit of good news – no matter how small – would be celebrated by dining out. But this is far more difficult now due to her incontinence and communication deficiency. Dining out is risky business and quite depressing without a conversation partner. However, over the past year or so, I really do not miss it. The noise, the fuss, and the cost loom large: I would RATHER cook, or grab take out and watch our favorite YouTube travel channels. I don’t feel like I am compensating or settling; I really just would rather have a cozy meal at home.
I am not trying to sugar-coat the losses that we caregivers suffer, and the sacrifices we make. I would love to be free to travel and dine out again whenever I want, but I am finding myself much more “ok” with skipping these activities and spending my time at home and in my back yard. Case in point – I look more forward to mowing the grass in the sun than going to some restaurant and spending $100 to have the same old conversations about nothing. Perhaps I am just getting older myself, and this is part of it.
My brain has been rewired to my situation. Activities that I used to “miss out” on just seem like a waste of time and money. They now seem shallow and pointless. Maybe that will change if care giving ends, but I welcome the brain reset. My own brain is helping me cope with this ordeal. For instance, I am far happier with a simple walk around the block with my wife, listening to a good album, or preparing a good meal for us. The simple life was forced upon me, and like the Borg, I have adapted. Although it may sound stifling, it is indeed a blessing to feel true joy about daily activities at home.
I wish you all the best. If you are stuck in this situation too, you may find it gets easier as your brain resets. This may not happen for everyone (or on the same timeline), but there is hope that you will find it easier in the future.
All the Best,
Bill2001
Author of “The Cavalry is Not Coming”
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@bill2001
I can so relate. I have had a brain reset with 15+ years of caregiving plus my own disability and health decline. I am in my mid 50s and definitely appreciate the simple joys of life. I don’t stress like I used to and am at peace. It is interesting sitting back and watching the world chase after meaningless things.
Enjoy each moment of simplicity! 🙂
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8 ReactionsThank 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
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8 ReactionsWhat 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.
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14 ReactionsI was struck by the way your transition to your current situation over time was shared. It made me think the same thoughts early on in my caregiving role.
I do miss out of alot of thing's ..but that being said I miss our conversations, laughing and connecting with each other has definitely changed.
If I dwell on it can make me sad. I try to keep my spouse involved in the moment we are in.
He has been slowly getting worse. He truly believes he will get better. Parkinsons has stolen so much! Thank you for sharing.
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11 ReactionsI can SO relate ! Thank you to bill2001 for the wonderful description of "brain reset".
Like many other respondents, I am still dealing with my spouse's early stage dementia. It is sad to give up our previous life of meaningful conversations, active travel, rewarding community work and social interactions.
I am trying to reset my brain. I will organize a scenic local bus tour instead of a trip to Europe, or a lunch out with friends instead of a night at the theatre.
Simple things. A shopping errand becomes the day's activity. My motto is "do what we can while we can " and I remain grateful for all that we COULD do in the past. Blessings to all !
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16 ReactionsI 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.
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15 ReactionsBill,you write so well…and my heart goes out to you for your courage and the way you’ve come to handle your journey. I am so grateful to you and others on this site, and so thankful I stumbled onto it. Best wishes - and thank you for this and “The Cavalry is Not Coming”. I read that when you first wrote it and think of it often.
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5 ReactionsAs I sit here crying this morning, exhausted preparing to go on what was supposed to be an enjoyable cruise, I realize I have to focus on what we still have and not all that I am missing of our previous life. We have had a wonderul life with each other and I am thankful I have those memories to support me because my beloved has lost that and I grieve for both of us. I pray we can all gather peace as we go to the grocery store (one of my favorite outings these days) or just life.
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5 ReactionsMy heart goes out to you all. Full disclosure-- 20+ years ago purchased long term care insurance. Had to use it on/of during three years when wife had major back surgery and contracted MRSA. Am using it now for a caregiver to come in at home. I realize that many/most ppl don't have it and life can be hell. My wife and I have had multiple discussions now (she is in early stage dementia and able to have an intelligent conversation) and in the past. I don't think either of us want to be a life sucking burden to the other. When it becomes obvious that she is not able to get what she needs at home, I'll find a good residential facility for her and keep up our relationship as best as I can. If I didn't have the insurance, I doubt that we would think any differently. I would obtain consultation from an experienced elder law attorney about how to divide our finances so that she would in essence be a "pauper" so that she would be eligible for medicaid. of that were to become necessary. I am not willing to totally drain our savings and have nothing to live on if I am not able to continue working.
We also have section in our advanced directives that allows us to go to a state that has a "death with dignity" law allowing for medical assisted self-live termination. I know many will disagree with our approach, but that's how we see things. This goes for both of us.
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5 ReactionsYou are not alone, but our situation is reversed; it is my husband in the early stage of vascular dementia. He is also insulin dependent and has congestive heart disease. We have put him on the waiting list for respite (a year waiting list), and if necessary, for admission to a care facility. We also believe in death with dignity and have a no resuscitation agreement, a copy with the doc, on the fridge and at the hospital.
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