Tag Archives: Alzheimer’s caregiver personality changes

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…..

Has Ralph’s Cognitive Impairment Turned Me Into A Butterfly, Or A Moth?

 

IMG_0250[Fittingly this moth (or faded butterfly) has fossilized onto our garage wall]

The fishing trip Ralph was scheduled to go on last week didn’t happen. His fishing buddy’s wife got sick and needed him at home. Ralph did not mind AT ALL…”I am dreading it”he kept saying as he usually does before going anywhere… and I was secretly relieved that the four days I had resigned myself to giving up were suddenly restored. I briefly considered not telling anyone, using the found time as a holiday from the world.

But I didn’t.

Instead, I called my vegetable garden partner to do some playing among the squash and corn on Monday.IMG_0298                                                                   I spent all Tuesday morning at a business meeting I’d forgotten to cancel, then called my Tuesday walking buddy. Wednesday I went to my Pilates class and then drove a visiting photographer, sponsored by the ArtRez committee I’m increasingly involved with, into Atlanta to spend the day at the Martin Luther King Center. I made a lunch date on Thursday with a friend I knew needed cheering up. And on Friday I headed back to Atlanta for a meeting of the patient and family advisory committee at Emory’s Brain Center.

Then I picked up my daughter at the airport. She and her husband came to stay at the farm for the weekend and we all attended a wedding together.

In the years before Ralph’s diagnosis, this week would have seemed a whirlwind of social activity.

But as Ralph’s social world contracts, mine seems to expand, as my recent posts attest. This is in many ways a good thing. I love having new friends, love being engaged with the world around me. But I also recognize a certain manic need that I need to face more squarely….

I was the kind of child whose grandmother caught me hiding in the coat closet at family gatherings. As I’ve written here before, I was the introvert, Ralph the extrovert. He loved to go to parties and stay late. I wanted to stay home or leave early.

So why have I turned into this gadabout who joins committees, seeks out new friendships at every turn, commits to projects without thinking?

FEAR is the word that pops into my head.

Our life together, Ralph’s and mine, could so easily become a constant retreat from the world. And to be honest, I feel drawn to drift along on Ralph’s rhythms. To rise late and go to bed early. To spend my day not doing much or talking much.

What I fear is the attraction I feel to downshifting with Ralph.

A lot of dealing with a spouse with cognitive impairment revolves how much to accept, how much to fight and push back. I cannot see into Ralph’s brain or read his thoughts. I understand he is viewing the world differently these days and that his needs have changed. But we don’t really talk about it. I sense he doesn’t want to, and I am not eager to press. All I can do is to [try to] accept who he is at the moment and not make unfair demands.

Because Ralph has a reason, an excuse, to withdraw from more active engagement with the world. (And dementia activists aside, he has made that choice.)

The problem is that sometimes that withdrawal is scarily appealing to me. Is that appeal innate within the mentally and physically lazy woman I’ve always been? Or is it a sign that I am becoming that dreaded condition called “old.” Neither option sounds too good.

I’m not about to cut back on my friends and commitments in order to burrow into a domestic burrow with Ralph. But I am going to work for a little more balance.