Tag Archives: Alzheimer’s Caregiver Stress

Ralph’s Night to Shine (And Forget Alzheimer’s)

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It never fails. Whenever I start complaining about my life as a caretaker spouse, events remind me to shut up, stop griping and recognize the good stuff.

Case in point, we had house full of guests last week:

My 20-something nephew living with us for the summer while doing an internship; my 13-year-old (step)granddaughter was having one of summer weeks at the farm; and a photographer from out-of-state here to defend (with my support) her local portrait project, which was being attacked as too controversial by some members of the project’s sponsoring art organization board on which I serve.

So the five of us were sitting around the dinner table, one of those big group meals at which Ralph and I used to excel and which I tend to avoid now because I hate sitting beside Ralph as he withdraws into silence unable to follow the thread of conversation. What I usually feel is a mixture of guilt that I am not finding a way to include him and impatience that he is ruining my enjoyment. (And the truth is it is my responsibility to make him comfortable in a variety of situations and I sometimes chafe under that responsibility.)

What I felt the other night was, well it was envy. Ralph was so damn charming that the three others at the table—for whom I’d been working all day to entertain in different ways—were enraptured. Even the 13-year-old, jaded as only a 13-year-old girl can be—sat up straight an listened with fascination as Ralph told his stories about meeting MLK Jr. The photographer leaned over to whisper how handsome he was. My nephew acknowledged that Ralph scared him when he was a little boy. “You weren’t mean, but you were stern,” my nephew said. The 13-year-old smiled slyly because the Ralph she knows is a pushover softie. Ralph agreed with her.

My envy reminded me how I used to feel in my introverted twenties when I was in a group setting with Ralph and he was the energy force around which everyone orbited. In those days I was obviously drawn to his charisma, if a little jealous of sharing it with others.

This envy was oddly refreshing. I admit I kind of like my new role as the social butterfly in our marriage but it can be tiring. I have become so used to being the one responsible that it took a moment for me to relax and let Ralph hold the limelight for a change. Once I did relax, what I really felt was wifely pride in Ralph’s charm. And even a little wifely love.

(But I can’t get too Pollyannish because the next day, exhausted by his social efforts, Ralph was more foggy than ever.)

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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…..

2 Conversations With Ralph–one bittersweet, the other just bitter

 

When the kids were small, I always knew our best conversations happened in the car.dialogue.jpgStrapped in seatbelts the kids tended to open up more about their lives; now Ralph does the same. We were driving home from a visit to his dermatologist when he brought up an issue that has clearly been bothering him.

“My IQ score has dropped,” he announced out of the blue. “Is that normal?”

“How do you know that?”

“I saw it on my chart last visit.”

I don’t know how he saw this nugget of information (or even if he read it right), let alone remembered, but I realize that problems  he cannot sort out seem to get stuck in his brain, like gum on the bottom on his shoe that he can’t shake off.

“Well memory probably affects IQ results.”

“117 is still above average though right?”

“Right.” My heart ached with protective affection.

…xxx…

On the other hand, Ralph and I have always had our worst conversations at night when we are tired and Ralph has had some drinks.

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So last night while I was trying to relax after a long day by watching mindless TV at the kitchen table, Ralph stormed out of the bedroom.

“What was the name of that real estate agent who tricked you into selling too cheap?”

I told him the names of the agents we used, one a friend of his. He grumbled some more and went back to bed, only to return moments later and begin to rant about how we were cheated and I should have known better.

He was talking about some property we sold in 2013, the year he got his diagnosis and was still half running things. He had chosen the agent and begun the negotiations pre-diagnosis; I had completed the deal post-diagnosis. Ralph and I had discussed the terms exhaustively. I didn’t want to sell the building at the time but he insisted.

Those months were among the worst in my life, a time I’d rather not remember myself, filled with my mother’s precipitously failing health, Ralph’s heightened, often angry anxiety over his diagnosis, our desperation to sell our business profitably, the sharp learning curve I had to master while laid up in a cast after I crushed my ankle falling on black ice. I did not necessarily make stellar business decisions, but frankly I handled it all pretty damn well considering.

In Ralph’s head last night, we had sold the property just weeks ago and he was obviously obsessing over the numbers (which he had wrong). As he began to berate me, I pretended to be absorbed in Saturday Night Live. In fact I was stewing in resentment and in memories of Ralph during the middle years of our marriage when I often felt he bullied me.

Then he switched gears.

“Where’s our money now? Who are those people who supposedly manage our investments? How do you know they are not going to take our money? You need to make sure they can’t steal our money.”

What I felt as he ranted was about as far from protective affection as you can get—hot white hate tinged with damp self-pity that I was stuck with him until one of us died.

This morning Ralph brought me coffee in bed, as sweet as could be. The conversation has erased itself from his brain as if it never occurred. I wish I could say the same, but I can’t.

 …xxx…

 

*A side note: as we were entering the examining room, the nurse behind the desk said to another nearby, “The Alzheimer’s patient is here now.” I clearly heard and am sure Ralph did too, but neither of us brought it up, not even in the car.

 

Ms. Grinch, The Caregiver (i.e. Me)

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This Christmas season I am definitely feeling like Ms. Grinch. Maybe it’s the increased sugar intake, maybe it’s the extra running around and social organizing, maybe it’s the gray weather, or maybe it’s not Christmas at all, just the wearing down of my patience over the last twelve months, but Ralph has been “getting on my last nerve.” And that nerve is shredding fast.

As I have said here so many times, this caregiving business has its ups and downs. Well I have definitely been in a definite crevice lately and having more trouble than usual crawling out. Or admitting I was stuck at all until this morning when I found myself texting my sister that I was feeling overwhelmed, the kind of admission I generally avoid. She responded sympathetically asking what was wrong; I wrote back “Nothing wrong exactly. Just day-to-day stuff. Everything slower and more complicated. Trying to adjust to reality of how Ralph’s limitations impact.”

As soon as I hit send I realized what I had typed was an acknowledgement of certain obvious but previously unstated realities:

1) I trip myself up with unreasonable expectations. Intellectually I know that Ralph is limited, but in the face of reality, I keep expecting him to step up to the plate. While occasionally, he does step up, like getting Zeus to the vet last week, usually he can’t. I know that’s not his fault, yet I still get annoyed.

2) Annoyance and its sister resentment are  only part of what I am feeling. Before that text Ralph and I had spent hours writing an email responding to someone asking Ralph for real estate advice. Actually I could have/would have given the same advice, but she trusts Ralph’s advice more because he’s always been the expert. And his instincts and perspective remain sharp. But he cannot hold onto a thought long enough to give advice. So I constructed the email letter by asking him the same questions over and over, fine tuning as I posed the same question in different ways. We actually worked well together because we both acknowledged without rancor Ralph’s memory issue. That our final product was a clear, concise and useful analysis should have left us both with feeling a great sense of accomplishment, satisfaction and even pleasure. Ralph was pleased, BUT I WAS EXHAUSTED. And recognizing that the effort exhausted him at least as much didn’t lesson mine—he napped much of the afternoon—as I rushed around carrying out the various commitments and responsibilities everyone juggles in a day.

Obviously lots of people have more responsibilities, especially professionally, than I do at the moment. But I am finding that the effort that goes into making up for his limitations so he can live as full a life as possible…well it’s frankly a drag. Literally, because

3) Ralph’s limitations have been dragging me down and wearing me out. I wake up most morning tired. Worse, I let myself fall into Ralph’s low octane rhythm. My energy has dropped with his but unlike him I have stuff to do, the vestiges of a business to run, his life to run, my life to run, along with various other obligations in our family and community.

4) And then there are my personal creative ambitions. I have to ask myself whether I can keep them alive much longer under the circumstances. And my honest answer is, I’m not sure.

As I wrote that sentence I took a huge breath because there, I’d faced the real crux. Can I put in the increasing time needed to be Ralph’s caregiver—his chauffeur and calendar keeper, his rememberer and mental translator—and expect to have the kind of energy I need to focus and create another world in fiction.

I’ve always said yes, of course. But now I’m wondering.

Having admitted my doubts, I hope I am back in the swing of positive energy very soon. I think I will be. We all feel overwhelmed at times, caregivers and caregivees. We all want to escape. We all have to find the way forward that works for us. And the path is not always the one we expected.

Just writing that last sentence, I feel better already.

Scattered,Bothered and Bewildered Am I–But Not a Nurturer by Nature

tire change

So yesterday, driving Ralph home from his shrink appointment in Atlanta an hour away, I hit a curb and flattened three tires. The day before I was writing an important email to an editor I wanted to impress and somehow hit send halfway through the first sentence. Sunday I was annoyed that all the guests arrived late to the brunch/shower I was co-hosting until I discovered the invitation said 11:30, not 11:00 as I assumed. (Well, my co-host got that one wrong too).

I tell these screw-ups on myself because I am aware that lately I have not been paying attention, that I am even more scattered.

Of course, I sometimes worry that I am “catching” Ralph’s Early Alzheimer’s, but more likely I am paying the cost of doing business as a caretaker without a caretaker personality.

The other night a friend from my adolescence called, and we had one of those wonderful rambling two-hour phone conversations that seldom happen anymore. Back when such calls involved sitting on the floor mindlessly twisting the phone cord while I chatted, she was the one everyone in our circle assumed would be the one with a big family. She was the warm, loving one. I was the one with edge.

But the other night she told me that dealing with her elderly parents who live across the country has taught her that she is not a nurturer after all. Fortunately, her more nurturing sister is taking most of the daily responsibility.

I have never thought of myself as the nurturing type either. As far back as I remember I was angsty and rebellious, even as a toddler. My younger siblings will attest that I was seldom a protective older sister. I avoided my family whenever possible. At thirteen I decided I wanted to be a Jewish nun to avoid marriage and children.

Yet here I am. I helped raise a step-son and two kids of my own. After my mother-in-law had her stroke, I was primary caregiver until her death two years later. After my mother had a psychological and physical breakdown, she moved in with me for the next nine years until her mid-nineties when she spent her last months in a nearby nursing home.

And now I am transitioning from Ralph’s wife to caregiver. The shift has been more gradual, luckily, than in many Alzheimer marriages, but it is always in process. And if Ralph is still in denial, I am less and less.

The patience required doesn’t come easily to me. I read other caregiver blogs and am amazed at the resilience, the selflessness, the willingness to give up so much.

I am not so willing. I have if anything thrown myself into more activities, begun more friendships. And although I do bite my tongue most of the time and don’t think Ralph notices too much, I am impatient.

And I am not as focused on Ralph’s needs as a nurturer would be. I don’t know what he is doing for hours each day. I encourage his painting, but I don’t push him to listen to music or talk about his past the way I know I should. I don’t get him to dance or bowl or join some activity to get him out and about. I don’t suggest we take walks together because I like walking with my women friends more.

And you know what, I am not a bad person. This is what I tell myself, anyway. I do what I can.

And I just need to calm down, take a breath, and put one foot in front of the other without tripping on my shoelace again…