Tag Archives: caregiver burnout

Facing Caregiver Burnout

Alzheimer's Spouse Issue, , , ,

This has not been an easy summer for me. The physical issues Ralph and I each faced were one thing, but I also found myself a bit overwhelmed.

For one thing, I found myself dividing caregiving energy between Ralph and my grandkids. The summer is difficult for working parents and I was needed more often than usual as a babysitter. I adore the two boys, but at five and one they are a handful. And while Ralph loves the boys too—and they certainly love their “Bop”—he is not helpful. If anything, I have to be on guard,  aware of those rare but unfortunate occasions in the past when something they did ticked him off and he reacted at their level, like an angry child. 

Now that school is back in session, my caretaking life is less splintered but I am still coming to grips with two other realities. 

One is that Ralph is showing small but revealing signs of slippage. His memory of the past has become muddier, while the newest memories slip more quickly out of his grasp. Repetitive conversations are certainly not new, but he not only forgets but can’t quite unravel facts and idea as they’re presented. And his capacity to manage his daily life has weakened. He used to make himself a sandwich for lunch every day. Then it became necessary for me to tell him to have lunch. He’s never hungry unless I remind him he is (although so far he still remembers his desire for daily beer). Now I simply make his lunch. Feeding the dog used to be the one responsibility I could count on Ralph fulfilling. Now I feed the dog. I also make sure Ralph showers. And recently I realized that he puts back on his dirty clothes if I don’t make sure they’re in the hamper and clean clothes are at the ready. 

But these changes are not noticeable except to me. He continues to make reasonable, even charming  small talk with friends and strangers. And he is physically healthy. I know many other caregiver-spouses facing quicker, steeper descents, so I feel a little guilty complaining about life with still easygoing, still more or less functional Ralph. 

But this summer, I felt depleted, less up to managing the daily grind of care. I have felt more lonely. And tired, the reason I have not written much here until now. I think I am coming out of a season of caregiver burnout.

I/We have been dealing with his cognitive impairment for ten years now. Ralph was diagnosed in 2013 but showed very clear symptoms a year earlier.   Those early days were highly stressful; although Ralph was able to do so much more than he can now, his capabilities FELT jarringly diminished compared to what he was like before. Words like cognitive impairment and dementia sounded horrific and terrifying. Gradually we adjusted of course. I began to recognize that one day’s new normal would only last for so long before the next level of new normal set in. I adjusted as one set of skills after another disappeared, grass mowing, driving alone, driving at all, playing Jeopardy with the tv, watching tv. I learned to tamp down impatience and to lower expectations. I depended less and less on Ralph for practical help or for meaningful interaction until somewhere along the way we reached the tipping point where Ralph became completely a dependent and I became a caregiver more like parent than spouse. 

Over these years I had moments of resentment and sorrow, but also of affection and connection. I also worked hard to maintain my identity. And I felt plenty of support; it didn’t hurt when others told me what a great job I was doing. Most of the last ten years, I’ve been basically in a pretty upbeat state of mind, and kind of proud of my ability to cope. 

But sometime during this strained summer (perhaps exacerbated by unending heat and rain), my inner resources shriveled. I just felt worn out. I saw my life narrowing with Ralph’s. I felt angry and alone. 

I can write this now because I am feeling better. All it took was a weekend in front of the computer doing bookkeeping of all things. Working with numbers took my attention away from everything else. This morning as I swam my early morning laps, I swished my arms through the water and suddenly realized I felt better, refreshed. I came home and called some friends to reconnect. I chatted with Ralph and stayed relaxed. Halfway through writing this post, I made his lunch and chatted with him some more before making sure he showered. And I still feel good.  Hope it last at least a little while.

Alzheimer’s Friendship

Alzheimer's Spouse Issue, Uncategorized, , , , , , , ,

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Last week I had lunch with a new friend.

A month or so earlier I received an email from E responding to a post. She mentioned that we once met at a support group meeting run by the Emory Brain Center. I didn’t recognize E’s name so wasn’t sure who she was; because of the distance involved, I attend the support group infrequently at best and haven’t been back for ages.

But as soon as I saw E in person, I remembered her. I remembered sitting across the conference table from an attractive woman whose name I didn’t catch and thinking  she is really angry—angry and exhausted—and what’s more, she’s willing to admit it! She had recently convinced her husband to downsize their home, only to realize in the selling, packing and moving that her husband was more incapacitated than she’d realized. Scrunched down in my seat, listening to E talk so honestly, I recognized that I was not facing my own complicated mix of anger, stress and protectiveness toward Ralph. E’s directness and her honesty were a truly liberating epiphany.

Now here we were over a year later, sitting in a café catching up, and as E said, it was “like looking in a mirror.” Our husbands had different careers but in many ways we shared similar lives before they were diagnosed with Mild Cognitive Impairment within months of each other and began seeing the same neurologist at the Emory Brain Center. Now both men are enrolled in the same Merck study I have written about . They both are devoted to their dog. And E and I are both…. Well, we are that same complicated mix of stress and protectiveness.

As E and I sat and talked over our salads last week One of us would begin a sentence and the other would be able it finish it. We didn’t have to sugarcoat, we didn’t have to explain. The words poured out. Being with E was so relaxing.

We lingered and lingered and then we went back to E’s house and talked some more. I drove away almost giddy with excitement, the way I felt at ten or eighteen when I met a new friend.

When Ralph was first diagnosed, one of the vows I made to myself was that I was going to maintain my life, that I would keep my friendships. And I have. In fact I have a larger circle of friends and more active social life than I used to. I have worked at building a network, professional writer friends, volunteer organization friends, political friends, literary friends, movie going friends, fun and conversation friends, family friends.

And online friends through the Memoryland community—and it feels to me like a community—along with other caregiver/caregivee blog communities.

Now I have an actual Alzheimer’s friend.

Ms. Grinch, The Caregiver (i.e. Me)

Caregiver/Spouse Issues, , , , , , , , , , ,

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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.

Ralph’s Famous Adventure in Hog Killing —or Keeping the Stories Alive Despite Alzheimer’s

Caregiver/Spouse Issues, daily life with MCI/Alzheimer's, , , , ,

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I was making dinner the other night when Ralph called me out to the porch where he was having his daily late afternoon cigarette and beer listening to the radio. A story on All Things Considered had piqued a memory from his childhood.

“Have I ever told you about the hog killing?” he asked.

Oh God, not the hog killing story again, I thought as he launched into it. How many times over the years have our kids and I have heard this story–how he was a little kid visiting relatives on a farm with his family one fall during hog killing season, how his easily hysterical mother started shrieking, how the gory killing is mixed into a memory of getting ice cream cones. But it’s a better story in his telling than mine.

“You know you should write that story down,” I told him. “All your stories, actually.”

He nodded. “Yes, I should.”

This conversation is not a new conversation. Every few weeks we agree he has a lot of great stories, and is (or was) a natural storyteller of the Southern charm variety. I suggest he get a notebook and write the stories down. He says, yes, he definitely will do that.

But given Ralph’s inertia fed by his place on the Alzheimer’s spectrum, that’s only going to happen if I make it.

And so far I have been a slacker. I tell him and myself I will get a notebook and set aside time each day for us to work on stories, but then I let the whole idea slip off my radar as quickly as it slips from his. His excuse is cognitive impairment. Mine is laziness at making one more effort. The discipline it will take for me to get him to get the stories down is the same discipline I need—and have so far lacked—to get him to exercise more. His lack of enthusiasm gets me off the hook and feeds my own penchant for lethargy.

But I am making early New Year resolutions. I need to get Ralph walking before he puts on more (not to mention my inches and pounds). More important, I cannot wait until Ralph and I are both inspired to record, whether on audio or in writing, his stories.

Because otherwise the day will come when I ask him to tell me one or he tries to remember, and the story is gone.

Alice Has a Pity Party

Caregiver/Spouse Issues, , , , , , ,

Mad-Hatter-Tea-Party

When friends compliment me for being patient and nurturing toward Ralph I have to laugh. Empathy for others easy, empathy for Ralph not so much.

Especially today. Maybe I can blame the bad cold I’ve come down with, but I feel like griping. I don’t blame you if you don’t feel like sharing my self-pity party, and if that’s the case, you might want to stop reading now.

I just spent the morning re-ordering his meds, which never arrived last week. I ordered refills weeks ago and have assumed they were on the way but when I went to feel his weekly box, I realized they still haven’t come and we are getting dangerously low. Evidently Ralph removed the post office’s post-it note without telling me I needed to pick up a package. The package got returned, we’re down to less than a week of some meds and I was on the phone with the mail order pharmacy working out how to get his meds for half an hour. In the old days, I would have yelled at Ralph for forgetting to tell me because he wasn’t paying attention, but how can I now, knowing it’s not his fault.

Then I re-organized the clothes in Ralph’s closet yet again. One of the more recent hints of slippage has been sartorial. He was never a snazzy dresser, but he was vain about his admittedly good looks. Now whatever is closest at hand is what he puts on. I no longer bother reminding him about the separation between work and dress clothes, but I do try to steer him in the right direction, mostly by having fewer choices visibly available.

Then I dug out a few Natty Lites from my secret hiding place and put them in the fridge for later this afternoon. Ralph more or less accepts this system for limiting his daily alcohol consumption although he’s remarkably able to find my hiding places, his memory and sense of direction still acute where beer and cigarettes are concerned.

This is all so trivial, and I know others’ problems concerning Alzheimer’s, not to mention poverty, hunger, war, are much worse. But I have noticed that managing these silly daily tasks with their subtle reminder of something amiss, something out of balance, sometimes drains more energy and patience  than dealing with Ralph himself. Or that after taking responsibility for the practical details of Ralph’s life, my patience for dealing with the man himself is compromised.

But as I said, I have a cold.

So I’m off to make myself tea and toast and pretend I have someone to take care of me for a little while.tea