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The Caregiver’s Brain

Bill_2001
Bill_2001 Member Posts: 151
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edited May 28 in Caring For a Spouse or Partner

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”

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Comments

  • upstateAnn
    upstateAnn Member Posts: 183
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    What a very interesting and insightful take on caregiving.

  • Dio
    Dio Member Posts: 885
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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.

  • annie51
    annie51 Member Posts: 483
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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!

  • Jgirl57
    Jgirl57 Member Posts: 742
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    Thanks Bill; your thoughts are always interesting.

  • Bridge4
    Bridge4 Member Posts: 60
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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.

  • Mint
    Mint Member Posts: 3,252
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    Thank you Bill for sharing.

    Maybe I am lucky that I have always enjoyed simple, quiet things better in general.

  • harshedbuzz
    harshedbuzz Member Posts: 6,021
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    This piece spoke to me.

    To find support as a caregiver, recognize how the role changes you : NPR

  • Kat63
    Kat63 Member Posts: 190
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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.

  • HollyBerry
    HollyBerry Member Posts: 219
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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.

  • A. Marie
    A. Marie Member Posts: 130
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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.

  • RickM
    RickM Member Posts: 120
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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. ❤️.

  • jehjeh
    jehjeh Member Posts: 156
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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.

  • Russinator
    Russinator Member Posts: 279
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    Well written - I enjoyed your post

  • Dio
    Dio Member Posts: 885
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    https://alzconnected.org/discussion/comment/244356#Comment_244356

    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.

  • LearningCurve
    LearningCurve Member Posts: 51
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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.

  • Daisychain
    Daisychain Member Posts: 1
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    Good morning. Thank you for your article the caregivers brain. It is so meaningful to me as is the cavalry aren't coming. . My husband suffered a massive stroke 14 years ago leaving him with physical deficits which we partly addressed with use of power wheelchair, car to carry it, change in life style etc. etc Fortunately we are both problem solvers and over several years sought ways to overcome barriers as far as possible. Travelling by car ....as we can't trust an airline with a wheelchair. Learning to be alone with our situation, some friends helped, family withdrew. We made the best we could to enjoy this different life which was a dramatic change.

    As time has gone on things have deteriorated physically and mentally. No one prepares you for this journey of degeneration. I think dealing with the cognitive decline is harder than the physical as you can at least try to find solutions be supportive and meet needs for many physical changes. Cognitive impairment is a very different matter and throws up different challenges.

    I haven't posted here for several years. But have frequently signed in and been encouraged and supported reading and identifying with many posts. For that I thank everyone who participates and reaches out to folks on this difficult journey of extreme caring.

    The caregivers brain article describes where I am now. Like you I take solace and joy from the quiet times, doing things at home together, watching TV, holding hands sitting on the sofa. My brain has also rewired to a more peaceful way of life. Acceptance is the key to appreciating time together but it's taken a long time to reach that stage it's a process .

    Everyday is a challenge for caregivers, only those who have walked in the caregivers shoes understand the pressure, pain, frustration and demands of daily living. My mantra is ...you can't boil the ocean. You do the best you can given the resources you have and try to enjoy the quiet times.

  • Lilydaisy
    Lilydaisy Member Posts: 73
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    Yours was a thought-provoking message, and the comments also constructive. I haven't thought about a "reset" concept, but it makes sense. I think there are times in life when we are going through something and we tell ourselves "it won't last, so hang in there".

    But ten years IS a long time, and maybe that's a time when we change our thinking to, "this HAS lasted and isn't over yet" and a reset is a good term for our change in thinking. We can all be hopeful for a better life "after", what however we define it. Hope is a good motivator.

    Thanks for sharing and best wishes for the time ahead.

  • persevere
    persevere Member Posts: 90
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    Good read Bill, as usual. I'm in year 7 going back to the diagnosis. Have a lot of the same feelings. I actually feel guilty if I've managed to get her to sleep and I go in another room to watch tv. Which is not to say that I don't get enraged sometimes at my fate - because I do. Our day or night out consists of the drive through at Chick Filet or the drive to nowhere as someone once put it. I don't know about anyone else but at times I try to think about why this is happening. Is it Karma - did we do something to deserve this? Was it our fate - to be put here to be a caregiver because we have what it takes? Or is all that just a load of hooey - it's all just bad luck.

  • Mitsu2
    Mitsu2 Member Posts: 18
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    Thank you for this perspective. My husband was in the hospital and rehab for a month and after being a full-time caregiver for so long, it was hard to figure out what to do with free time. I felt guilty because he was so miserable in those facilities, but now I'm trapped again and have almost no time for myself unless he's sleeping. I look forward to grocery store trips on days when he's able to go with me, just to be around people and have some social contact.

    I've realized that I've actually been in a caregiver role for about 14 years. That was when he became unable to work, to drive, to manage finances or home maintenance, and avoided almost all social interaction. Early in the process, medical providers attributed his behavior to depression and anxiety, but they missed the cognitive changes. He was still able to be alone for short periods of time until about a year ago, but now needs constant supervision. As his condition worsened, he refused most medical care, so wasn't diagnosed until there were crisis situations with police involvement. I'm still coming to terms with limiting conversation to very simple and comforting topics to avoid upsetting him. He listens in on phone conversations, and watches my computer screen, so I have to communicate when he's asleep.

    So, I have a very small world in my home with my dogs with phone calls with my son and my sister. I love to garden, but can't leave him alone in the house to do much work outside. My son comes over for a few hours a month, but is too busy to do much more.

  • White Crane
    White Crane Member Posts: 1,089
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    My husband has been in MC going on two years but I understand what you are saying about the caregiver's brain. I know I am different from when this hellish disease first began over 12 years ago. Bill, I used to envy my friends who were traveling and doing things just like you talked about. Now not so much. And I find myself not feeling shocked or upset when DH says something or does something that is hard for some of the family to cope with. I don't expect anything of him anymore. He isn't capable of very much and all I can do is love him the way he is. Maybe that's acceptance. As to travel, I went to one of my DH brother's funeral about six weeks ago. It was the first time I had flown in about eight years. And the time before that was only possible because our daughter came from Boston to stay with her dad so I could attention our grandson's college graduation. I stay close to home. The MC calls frequently due to his lung problems and sometimes he falls. My brain seems to take it all in stride. Caregiver's brain.

  • JDancer
    JDancer Member Posts: 538
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    https://alzconnected.org/discussion/comment/244251#Comment_244251

    I could have written this. I recently hired a caregiver, but it feels like I'm paying ransom for a few hours of freedom.

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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