Tag Archives: Balancing Alzheimer’s Caregiving and Personal Needs

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.

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.