Tag Archives: Alzheimer’s caregiving anxiety

Alzheimer’s Drip by Drip by Drip

 

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Ralph survived BabyRalph’s birthday party, but I wouldn’t say he had a great time. The 6-hour drive down included a lot of pit stops, several barely in time. Ralph took a nap as soon as we arrived Friday afternoon. On Saturday morning I left him and my son at the AirBnB while I went over to my daughter’s to help prepare for the party. When I picked up my son later in the morning, Ralph was not interested in getting up yet. He ended up “resting” until almost one—the party was at two. The party ended at four and Ralph took another nap, until I made him wake up to eat something at nine. We drove home the next day after brunch—at which Ralph complained about the confusing menu although he ate every bit of his meal. I was exhausted, not from the drive or the baby, but from the anxiety.

Actually exhausted may be the wrong word. Living with and caring for Ralph at this stage on the Alzheimer’s spectrum—when his loss of memory and coping skills are not always obvious to others but demand careful management from me—can be physically and emotionally tiring. As I’ve said before, thinking for two is draining. But it is not the whoosh of exhaustion that bothers me as much as the slow drip drip drip:

The repetition of course, the constant re-explaining. But also the small limitations that seem to be shrinking my world an inch at a time. His growing resistance, that may or may not connect to inability, to sit through a movie or a restaurant meal with friends, or a TV program with me, or a conversation. His growing resistance, that may or may not connect to inability, to doing small chores from changing a light bulb to putting his dishes in the dishwasher. And most of all his growing resistance to leaving the farm. In each case, even as I fight to keep active in the larger world, I find myself lowering my own expectations.

It may not be fair, but I resent the limitations he’s putting on my life. I’m a healthy woman in my late 60s and I want to enjoy these years, but I feel saddled a little more heavily all the time. I can’t help wondering, given the history of a marriage in which he often didn’t pull his weight, whether Ralph wouldn’t be behaving in some of these ways even without Alzheimer’s.

At the same time, I know how lucky I am. Lucky that Ralph’s condition is drip drip drip, not the plunge downward others have experienced. Lucky that we are financially stable. Lucky that that I have the luxury of being resentful over such small problems….

P.S. Here is a link to an article from the NY Times on preparing advance directives in case of future dementia. The information is probably too late if you have already been diagnosed, but worth considering for the rest of us….. https://www.nytimes.com/2018/01/19/health/dementia-advance-directive.html?hpw&rref=health&action=click&pgtype=Homepage&module=well-region&region=bottom-well&WT.nav=bottom-well

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…..

RALPH TRAVELS TO BABYLAND WITH MIXED RESULTS

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The picture above of Ralph holding his namesake may be a bit misleading. During the recent ten days Ralph and I spent in New Orleans to hang out with our now three-month-old grandson, Ralph held babyRalph exactly twice.

And that was after much prodding.

But he did hold him. And he did survive ten days away from the farm. (In fact I had booked an airbnb for ten days knowing we might leave early if necessary.) So over all, I’d say it was a victory, a pyrrhic victory…

He was not unhappy. Our son came down from NYC to surprise Ralph and meet babyRalph. Big Ralph was pleased and quite animated the first night. After that he read his book and napped a lot on the couch while the rest of us cared for and played with babyRalph in the next room.

Mostly Ralph drank coffee or beer and smoked cigarettes on my daughter’s front porch. Pretty much the same way he fills his time at home. Fortunately, my daughter recently moved into a renovated New Orleans shotgun with both a front porch. By the second day, Ralph had met pretty much everyone on my daughter’s small street where the neighbors all interact —white, black, Latino, gay and straight, elderly and hipster. Everyone thought Ralph was charming because while talking to strangers who demanded only the smallest small talk, he came to life. But with us inside, he was slightly removed, in a vague fog or intimidated by the hubbub surrounding the baby.

Frankly I found grannynannying while watching out for Ralph exhausting. Physically exhausting because I was running him back and forth from the airbnb where he slept twelve hours every night while I helped with the baby’s early morning feedings. And definitely emotionally exhausting as I tried to be grandmother, mother, wife and caregiver.

On the drive home, we shared what has become a rare moment of genuine conversation. Ralph acknowledged that travelling seems to make his memory worse, that leaving the comfort of his routine was difficult for him. I said I could see that. Then we went back to listening to a Bob Dylan cd.

But the unspoken message hung in the air—no more travel for Ralph.

My Caregiver’s Dream I’d Rather Not Analyze

My dream:

I am at the beach with children, either my kids when they were still young or grandchildren I don’t in fact have yet. A blue sky and the sound of waves. We are having a good time, digging in the sand and building sand castles, throwing a beach ball. Suddenly I realize I don’t see Ralph. I call his name. Since I know he is not much for going in the water, I wonder if he has wandered somewhere? Then I hear muffled noises, look around and find him nearby buried under the sand—buried head and all so I really only see the shape of him under the sand and really only the shape of his head because he [a Freudian slip typo I just noticed and fixed–I originally typed “she”] is buried vertically. But somehow those words are burbling up through the sand. When I scoop the sand away, he is still breathing and talking as if nothing is odd….

How vivid and obviously meaningful this dream is. When I woke up I knew exactly what it meant and how it tied in to Ralph’s Early Alzheimer’s. Then emotional self-preservation  set in and blocked my analytic powers. Now I literally cannot remember what about it seemed so important. But let me try to face, here in real time, why the dream scares me on so many levels:

My panic at Ralph’s initial disappearance

How much fun I was having without him

The indistinguishable noises that were his attempt at words

Ralph buried alive

My power to scoop the sand away

Ralph’s nonchalance after I dig him out

My annoyance that he doesn’t notice and keeps on talking

Ralph’s muffled life