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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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Well I think you are on the right spot. I to feel like I am trapped on an island and no rescue in site. I feel like I have been doing this Caregiving of my spouse has had it's good times..but lately I don't know what the next odd, mean or confused comment will be made. I feel guilty because I try to stay ahead of potential problems. That being said I am thankful for laughing and connecting with him at times. He really is funny when he is animated and saying things like the man I married. Other times it seems like the days are long and tedious to say the least. He is demanding ( nicely ) and awful the next. I feel that I have stamina and I miss so much of a life I no longer have. He watches TV more than anything. I think it is boring and appreciate a conversation. We only go out to eat when he has an appointment. Sometimes that does not happen as he is worn out and needs a good nap. I am not sure what level of grief I am on. It varies daily. I hope everyone enjoys their wine. Hopefully together or screen time! Best to you all. Caregivers do feel anxious, happy and overwhelmed.I have no relief right now . All is good today. Thanks for sharing. 💜💜🫂
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7 ReactionsHi Prayers Bill2001 I am taking care of my mother with dementia and she is in the beginning stages.Like you, I am struggling, but have accepted her situation as I love her very much.We are looking for assisted living, because I am ill as well with parkinsons
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5 Reactions@boppi I have those days, like you we have had a great life so the memories are still there. I cry quietly it’s hard. My husband seems okay as long as I don’t make waves. Things are changing things are missing, words don’t belong to the items, he looks for his wallet and finds his phone. But every day when we wake up he says I am so pretty and he loves me. This is the reminder I need to get me through my day. Your right our trips consist of the grocery stores etc. I just bought new bedroom furniture and a bed it was hard art first getting him used to it but now he loves it. We just keep plodding along and realize this is now our life it’s really hard since we only get one life.
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6 ReactionsThere’s a very good book I can recommend that discusses the effect of caregiving on the caregiver’s brain. “Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain.” by Dasha Kiper.
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6 Reactions@pamela78 so honest + real. I’m 50, and recently became full time caregiver to my husband who’s 60. The last year or so he kept complaining of brain fog, fatigue, couldn’t watch movies anymore because they were too much for him. Stopped having conversations with me unless they were logistics; weather, timelines, food…irritable + angry all the time. December we found out he had a brain tumor the size of a large apple. In January they removed the tumor. He has glioblastoma, and Major NeuroCognitive Disorder. “Dementia”. We are currently undergoing radiation + chemo treatment. Cognition continues to fluctuate. Fatigue increases confusion. I am the schedule manager, nutrition pusher, emotional regulator, verbal punching bag.
He of course denies all the symptoms as well. Minimizing everything.
Its lonely. Silence fills the air more and more. The mere idea of a selfcare day is overwhelming. All the possibilities, and yet I’m so tired.
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12 Reactions@amy913 I'm so sorry this is happening to you and your husband. It's so frightening and overwhelming. And the exhaustion that just drains you and never ends is like nothing else. One day at a time. Someday you'll look back at all this, wonder how you made it through, and be proud of yourself that you did.
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3 Reactions@tgeno , excellent read. I have enjoyed listening to the audio as well. They have it on our library’s app. I also bought a copy for a friend. This is actually the only book on the subject I have enjoyed! Thanks for sharing.
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1 ReactionYour post was so moving , inspiring and calming all at once. It helps explain the new passage of time. My brain was set to prioritize my caregiving for my Mom over my husband, my children, my career, my life. Then recently I chose a different path that included me, my agency to make decisions to get support. Support from a Home Attendant. We just started this week. At least it frees me up for 4 hours each day for six days. My Mom was content after day 1 but at the end of Day 2 she was determined to get me to fire the home attendant. But, my brain has reset, I know that I am allowed to have support so that I can live. Because If I die, who will care for my Mom?
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4 Reactions@amy913 I am so sorry you are having to deal with so much. We all are and it's overwhelming. I just keep saying the same thing every day to anchor myself:
Courage to take on whatever we now have to do; Clarity to know what and how to do it, and God's light to help guide us through our day, as a caregiver. We are not alone.
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2 Reactions@jeanadair123 Looks for his wallet and finds his phone. There is nothing humurous about this disease but I chuckle this morning reading that line in your post, becasue that's what my husband does. I sound like a broken record everyday, "do you have your wallet, do you have your phone, do you have your key, do you have your bookbag. We have a process now where we lay everything in one place. Not sure how long that will last but we're trying to adjust to the new normal. If that's what this is called. I agree, just the mere fact that your husband wakes up and sees your beauty, is a wonderful coveted thing. Interesting, my husband tells me that too...........and for now, that's a blessing for us to hold onto.
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4 Reactions