Tag Archives: Managing Alzheimer’s Caregiver Expectations

Stasis Defines this Alzheimer’s Marriage, At Least for Now

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

“Stasis (from Greek στάσις “a standing still”) may refer to: A state of stability, in which all forces are equal and opposing, therefore they cancel out each other. Stasis (political history), as defined by Thucydides as a set of symptoms indicating an internal disturbance in both individuals and states.” From Wikipedia

Well Ralph and I definitely fit the definition, which I looked up after one of those small moments that clarify the big picture

 

knox toddlerWhile face-timing with me this morning, BabyRalph threw a little tantrum when my daughter wouldn’t let him hold the phone. As he kicked his legs, my daughter laughed, “He is becoming a toddler.” My emotional reaction was “Oh no, I want him to stay an adorable baby forever.” But of course, I also want him to grow up and am excited by every developmental step he takes. Just now, I had the odd and uncomfortable realization that my wishes for Ralph follow parallel lines, only maybe in reverse.

Ralph has maintained his cognitive abilities on about the same level for long while now, around five years. This plateau has been an incredibly lucky break for us. When I read and talk to other caregivers whose loved ones were diagnosed and then nosedived quickly, I marvel at Ralph and my good fortune.

We still live a mostly normal life, at least on the surface. If anything, Ralph’s routine has hardened and within its walls he functions very well. I keep his pillbox filled, his clothes clean, and his meals prepared just as if I were any wife (well any wife in the 1950s, although my housecleaning and disposition fail the Leave It to Beaver test). He spends most of his day in his “office,” even if all he does in the “office” is listen to the radio and talk to his dogs. So I have plenty of free time to carry on my life. We eat dinner together watching Jeopardy and then he goes to bed.

This is not a hard life. Yes there is the underlying stress of his shot memory and his general cognitive decline, the loss of his curiosity and engagement with the world beyond our mailbox. But really, life could be so much harder. Living with Ralph is now like living with a child who is not going to grow up. Whose developmental steps if he takes any will be backward, toward a kind of funhouse version of babyhood.

As much as I want BabyRalph to stay my snuggly grandbaby, it is fun to imagine him big enough to pull that rake in the picture above. I cannot and don’t want to imagine Ralph’s future. And yet I also have to admit an ugly truth. I imagine what my life will be like when Ralph’s cognitive abilities deteriorate with horror but also sometimes with a kind of relief. The urge to get out of the stasis–which in the case of Alzheimer’s includes both standing still and inner disturbance–is real, even when I know the escape will be to a much darker, harder place.

Ms. Grinch, The Caregiver (i.e. Me)

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

5be280882a292b0707916c68a16ad8f3.jpg

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.