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,
Bill_2001
Author of “The Cavalry is Not Coming”
Comments
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What a very interesting and insightful take on caregiving.
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Hi Bill, I hear and feel you! Your post so very much resonated with my own conundrum. It's only my 4th year since DH's initial meltdown but it feels like a lifetime ago. I've gone through all the dark depths of wishing God would take DH peacefully in his sleep or take me, but everything has taken a huge turn where DH is almost normal for a year now after having added Depakote. If not for the violence and Mr. Hyde episodes, he wouldn't even be in MCF in the first place. The scariest part was that I believe he might have been possessed at the onset. Those traumatizing days are so embedded in me that I simply can't bring him home. If the violence starts up again, I don't think I'll survive it. I often question how much longer?? There are no answers. I'm still figuring this all out. I thought I had reached acceptance but now I'm fraught with guilt and ambiguity. I try to be grateful for all the help I've received along the way and for DH's turnaround. But it's just too hard to stay positive to see the future.
Wishing you the best as well.
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Thank you Bill. This was interesting reading. Gives me hope that I may experience some of the same brain resetting you describe. It sure would be better than the thoughts I have now!
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I’m still struggling with the things I can no longer do because I cannot leave my DH alone. If I’m out and about, it means I’m paying someone to be at home with him. I used to love taking our pup on long walks. I’m grieving the daily loss of my DH and the loss of my life as I knew it. Rarely if ever will a family member or friend come over for a visit. As someone recently put it, the disease has outlasted their compassion. Pretty much, if someone other than my DH and I are in the house, I’m paying them to be there so I can leave. That’s really sad when I think about it, paying people to come over. Life is painfully different. I pray my mind will reset.
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thank you Bill. Well said as usual. I’m in Stage 8 since last August and I still find all those things trivial. I have to force myself to go. It’s just not the same. 💜
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Thanks Bill; your thoughts are always interesting.
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Bill, thanks for dropping in and updating us on your situation and the new insights. My heart goes out to you as you approach a decade in the caregiver role. Your post raises an interesting question for me, and probably many others. Specifically, after 4-5 years of dealing with my DW’s issues I am learning to find solace in thinking about life after this is over, and it seems to help provide motivation to stay positive and healthy, which in turn makes me a better caregiver. It is hard to imagine a 10-year or longer timeline, and harder still to grasp the amount of perseverance and patience required, especially as dreams for a life after this ordeal begin to fade away. In trying to reconcile goals for the future with acceptance of the present challenges, it was helpful to relook at Viktor Frankl’s “Man’s Search For Meaning”, which helped him survive the Nazi concentration camps. He stressed the importance of having BOTH those goals for the future, but ALSO the need to find purpose and meaning in even the smallest things as we work through our present challenges. This resonated with me as you mentioned finding happiness in a walk around the block, listening to music, and preparing a meal. Thanks again for sharing, and hope to hear from you again soon.
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ThankyouBill for this poignantly written insight into a decade with dementia. I have The Cavalry is Not Coming pinned on my wall, I have passed it on to a friend (I hope you don't mind) and to my Phsycologist.
This article the care givers Brain is also absolutely spot on.
My DH and I are into our 8th year with VD and Aphasia. I was trying to express to my Phsyc yesterday how certain things no longer seemed important, travel, cruising, dinners at certain restaurants, red wine and the list goes on. I asked her was I loosing it? But you have eloquently said it all, i have learnt to use the drive through at Macdonalds, we don't have to get out of the car and we get a treat that can be eaten overlooking the yachts at the marina. Life is full of richness with breakfast with the birds in our own back garden every day. Life is a puppy bounding into the water and us walking so very slowly on the beach. These are all wonderful things and its enabling me to listen, without the envy that I used to have, to friends off on yet another cruise or having dinner with friends at a flash restaurant. I am learning to adjust and protect my self and wrap my arms around my DH and dance (shuffle) in the kitchen with our favourite tune.
Thank you for letting me see that I'm doing as well as I can and this part of my journey is a difficult but gentle rewiring of my brain.
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Thank you Bill for sharing.
Maybe I am lucky that I have always enjoyed simple, quiet things better in general.
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This piece spoke to me.
To find support as a caregiver, recognize how the role changes you : NPR
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Thank you so much for this post. You have a talent for writing. I too am 10 years in this journey with my DH and through many emotional ups and downs on my part, I feel I am at the point of true acceptance of my DH’s situation. And through this acceptance I am now able to take it a day at a time and yes truly enjoy the moments we have together. I don’t think much about how many more months or years we have together, rather I focus more on each day and really making them the best days I can for us. I hold his hand each day, tell him how special and wonderful he is and how I am so happy to be spending our days together. Believe me I have thought of all the options and I know for me I want to have my DH right here at home with me, so when I say I am happy to have him here with me I do mean it. And I agree with you, Bill, I do not feel envy toward others taking trips etc., but happy for them and accept that is not where life has taken me but looking back on my life it was a wonderful life and I owe most all of it to my DH and so am blessed to have been married to him for 40 plus years and happy to still be able to share our lives even how they have been altered by this terrible disease.
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Bill, it's good to hear from you. Several of your old posts stick in my mind and pop up at various times. I saw this today and asked myself which parts resonate. I think the pandemic started the shift in my thinking; we were early in the journey and found the joy in hikes in the county parks, paying attention to nature, eating takeout on the porch. Five years later it's been scaled back to walks around the neighborhood and sharing a meal without (many) complaints. I do wish I could spend a night or two away from home, though!
I also think often of parents of children with disabilities. Some of the differences are obvious but the change in perspective is possibly the same; while this person is in your life, this is your reality. What makes us want the things we want, anyway? if we lived in a culture or place where we didn't eat out or go on expensive trips, would we want them? our smaller world with our loved ones is a normal world for many.
Thanks again for a chance to think about something new today.
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I get it. Life has stopped for me as well. I am kind of an afterthought for my family as I mostly stay home and provide care 24 X 7. My "bucket list" includes many things that people do all the time and may not even consider special. It has been over a year since I have gone to a restaurant and five years since I have traveled further than 30 miles from home. Yes, life goes on but mine is pretty much over and I am not adjusting.
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Bill, you are one of our most articulate and insightful contributors, and I always look forward to reading what you write. "The Cavalry Is Not Coming" is a classic.
I'm another one who's in Stage 8 (DH died almost 2 years ago), but who finds herself changed forever by the caregiving experience. I too no longer take pleasure in a lot of things that the world in general thinks are sources of pleasure. I no longer travel by air (for multiple reasons), rarely travel further than a day's drive from home, and am generally content to stay home and mind my own business. Etc.
But please do accept my compliments, from one side of the caregiving trench to the other.
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Bless you man. You’re living in “the now” and have accepted it. I’m working on that…and my dear wife has passed on. ❤️.
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Thank you for these insightful words. DH and I haven’t been out to dinner or other entertainment for years. Today, we had 3 medical appointments and more than 90 minutes between the first and 2nd. We went to the hospital cafeteria for lunch. It was very quiet today and I realized I was really enjoying myself. We talked, we laughed, we just enjoyed the moment. At one time I would have been resentful about a “date” being nothing more than a hospital cafeteria burger. Now, I appreciate these small moments of joy. You’re so right about how this disease can change us and our outlook. One small, bright light in what is usually a very dark place.
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I had thought I was probably the only spouse to wish that God would just go ahead and take me. When I'm at my wits end after 11+ years of being on this journey, I think what a relief it would be. Then my next thought is please, dear Lord, let me continue living so that I can continue caring for our special needs son for whom I am also caregiver. I can't abandon him and he brings me joy when nothing else does.
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I also have a special needs child. She is 38 now and my concern has always been what happens when I am not here. We worked with the state and finally got her into an Adult Family Home about 6 months ago that is only three blocks from our home. I too have asked God to take me. The last few years have been hard (but that is true of everyone here) Alzheimer's is a big part of that (my wife is in MC for about a year) but not the only part. Since God didn't take me I am still trying to figure out what to do.
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Well written - I enjoyed your post
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RayeMc, you have more people to care for than I. Bless you and hope God won't abandon you. I vocalized that I was angry with God and my DH asked me not to. I honestly don't know where to place my anger.
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Bill, beautiful, just beautiful. Encouraging to read as I am in early-ish stages with my DH. He is a former corrections officer. We met married after his retirement. He's a big scary giant with a sometimes soft side. Brain reset, you say? That makes sense. Maybe I need to pray for that. All the best to you, Bill.
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I will reach the nine-year mark in two months. There are places I would like to go to and things I would like to do, but I don't. To do those things alone, without my wife, would not be nearly as enjoyable. I know I would feel empty inside. I understand why so many men in this situation get girlfriends. I don't fault them, but it's just not something I would do. So, for now, I just spend my time in a bottle and hope that when the bottle breaks, I'll have the ability to continue on.
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It has been nine years for me too. I feel the same way you do. I would like to have a close relationship again but I can't now. Our marriage wasn't good for a long time before this disease but we are still married. How do I move forward with a new phase of life or be happy while my wife is slowly dyeing 5 miles away in MC? How can I feel good about giving up happiness and staying committed to someone that I resent? How can I not resent someone that has disrespected and betrayed me so much and shown that how I feel don't matter? I can't move forward, there is no going back and I am not happy here. Maybe when the bottle breaks. I have gotten comfortable not going out and doing much and that scares me because if I get too comfortable with it I may never go do anything. Comfortable habits are hard to break.
I read what I just wrote and it sounds very gloomy, but gloomy is how I feel at times. Life is not all bad even though it feels like it sometimes. I pray for a brighter future for everyone dealing with this.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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