Caregiver Brain Drain

 

 

cloudy.jpgLast week I wrote about Ralph’s concern over his IQ dropping.

This week, I’m worrying about my own brain. I walked this morning with a friend who has done a lot of caregiving herself in the last two years, though not for Alzheimer’s or dementia. As we chatted about responsibilities, etc., she admitted with a laugh that she was feeling less smart these days. I almost hugged her in relief. “Me too, me too, me too.”

She blames being exhausted.

And that is part of it.

But, in my case at least, there’s more than physical tiredness at work. (Of course, after typing those words, I felt a huge urge to close my eyes for a just an itty-bitty nap.) It’s a kind of emotional depletion.

Since returning from my semi-hiatus in GrandBabyLand, I have had some trouble re-adjusting to the reality of full-time life in Memoryland. Ralph’s memory and what he calls fogginess may or may not have worsened, but I am finding it harder to navigate.

I know perfectly well and remind myself regularly that our situation could be a lot worse. He is physically healthy and still more than able to care for himself. His memory is shot but he still knows his place in the world and can “pass” as normal much of the time. He is not angry or depressed. When I read about others in much more difficult situations, my heart goes out to them. My impatience with Ralph’s inability to carry on a conversation about some issue that I happen to be fired up about, my annoyance when I’m stuck with some chore he used to do, these are obviously petty problems in comparison.

And yet. And yet. Thinking for two is draining. Always putting his needs first is draining. And allowing myself to share/embrace the less demanding mindset/lifestyle he requires is not draining, but way too easy.

Am I mentally tired or mentally lazy? Probably a little of both. Spending as much time as I do with Ralph, repeating and explaining, making sure his life runs as smoothly as possible, acting as a buffer between him and his anxieties, wears me out. But there is also something lulling about the undemanding simplicity of the life he prefers and which I increasingly share. It is tempting to limit my focus on our meals, our pets, the weather, small housekeeping issues, and the novels we both love to read. (I spent the last few days, in fact, re-reading Trollope’s Barchester Towers, to escape the upside-down political realities and to refresh myself enough to write here.)

But carrying out tasks, and even taking on new ones like volunteering, is not really the real problem. “Chop Wood Carry Water” and all. More difficult these days is thinking. Anxiety affects my logical and organizational thinking now that I am making decisions for Ralph as well as myself, particularly in areas where he used to excel like financial and future planning decisions—decisions I frankly don’t much want to make or think about at all. Nevertheless I know I handle them competently enough to get us by. What I am not doing is creative thinking. I don’t seem to have room in my brain. And so far at least, “Chop Wood, Carry Water” has not cleared the way.

If I am honest, what has paralyzed, or at least enervated me is a growing fear of what the future holds. For years now, I embraced the present, the plateau I have written about here. I didn’t let myself think about the future. That future is harder and harder to ignore. I see the small signs and I begin to envision the possibilities. Not only the realities of Ralph’s eventual mental and physical downward slide, of the eventual need to face moving, but of my own eventual diminishment. It is incredibly frightening.

Yet, the flip side is that in facing my terror I also receive the gift of empathy, because I can’t help realizing this terror is what Ralph faces every minute of every day. And that recognition gives me a greater capacity to appreciate him and our life together.

Which is a good thing since we are about to drive alone together for the next six hours…..

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12 thoughts on “Caregiver Brain Drain

  1. I’m on the other side of the fence and so I’m sure I lack the caregiver perspective. It is a progressive disease, and there’s no avoiding that you have little choice but to assume more responsibility. But that makes it even more important to remember to ask yourself: do I really need to be doing that for him/her? We’ll retain our abilities the longer we exercise them, and you’ll have at least a bit more time for your own lives if you don’t do what we still can do. So we benefit on both sides of the fence. Not easy to do, I’m sure, and probably gives rise to its own kind of exhaustion to be asking that question all the time.

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    1. You are completely right. Yesterday Ralph installed a window ac unit. He didn’t want to initially, but it was not something I could do. I thought I might hold off and get someone else to help. But Ralph stuck to it. We were both pleased with ourselves afterwards. Your self-awareness and perspective are so important to share. And you humble me with your grace and goodwill.

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  2. As usual, your posts are so well written and profound. I, too, feel as though my life is shrinking to fit into my husband’s world while my contemporaries are traveling and having fun. I never took naps before and now I do it sometimes, because caretaking is exhausting. Caring for a child is easier, because one can see progress. I am just grateful that he is kind and still appreciates me. I try not to worry about the future or feel hopeless.

    Thank you.

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  3. Part of what makes you tired is always having one eye and part of your mind on the future. You don’t know when there will be a precipitous slide that will catch you off guard. You really can’t make plans for very far in the future plus you have lost your “travel buddy”. I have friends whose spouse have diagnoses of terminal illnesses. The difference is that they have a more definitive timeline and they can still have very meaningful albeit sad conversations. It is hard when you have to dumb down the conversations, take over household tasks without making it look like you are and all the while you are thinking ” how long before I won’t be able to run quick errands by myself”. Each day that goes by is probably the best day we will have. Sad, sad, sad.

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    1. Oh Karen, you nail it exactly. And some days are easier to see as best ever than others. Yesterday was trying but today happens to be a good day. Ralph is cheerful and helpful and a bit more engaged.Therefore so am I.

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  4. Once again, your write could have been written by me, if I could write as well as you. Just yesterday, someone called me to see why I wasn’t at a meeting. I had it down for Friday, and I was at he doctor-again- with Neil so couldn’t rush to the meeting. Then i discovered that I had misinterpreted a big task I’d taken on. I’m feeling incompetent and thinking about saying I’m more of a handicap to the organization than a help. I already had cut down on my responsibilities but thought I could handle this one working at home. I, too, have felt like just hanging with Neil and getting a few things done may be all I can or want to do. I, too, miss conversations of import. I’m worried about a grandchild but can’t talk it through with Neil. I’m exhausted by the repetition and explaining. And dread and look forward to out trip to WI for our oldest grandchild’s college graduation, followed closely by our 2 week beach vacations, the first week of which we will have 13. The next week just Neil and me and another couple.

    You are so good at teasing out nuances of caregiving. Thank you.

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    1. Your life and mine are so similar. Last week I was sitting doing bookkeeping when I received an urger text about a lunch appt. I had down for the next day. I find keeping my calendar straight is much more difficult than it used to be. Your next month sounds daunting frankly. I no longer consider vacations with Ralph vacations. But he is in a great mood today and has been more helpful and engaged than usual so am writing from a place of more strength and good cheer than usual. Will be thinking of you.

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    1. Thanks so much for writing. It helps me so much to speak my reality and have it confirmed by others. It is easy for folks in our situation to doubt ourselves.

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