An old friend called to catch up yesterday. We talked for maybe 40 minutes, were nearing the end of the conversation, when she asked, “How is Ralph doing.”
She’d clearly been both hesitant and dying to ask. I had been equally hesitant and dying to answer.
This scenario seems to be repeated in one form or another multiple times a week these days. Everyone who knows, however vaguely, about Ralph’s cognitive problems wants an update but everyone seems slightly uncomfortable asking.
For my part, I am both reticent and overeager to share.
I always find myself answering, “He’s holding steady,” and then launching into all the little negative changes I’ve noticed, interrupting myself to say, “I know this sounds trivial but…”
Because, really, I don’t know how he is.
Ralph is scheduled for his annual testing in two months. As the appointment nears, I find myself thinking about it more and more with both dread and anticipation. (Ralph doesn’t know it is coming up and there is no reason to mention it; either he would quickly forget or the fact of the looming appointment would lodge like a lost jigsaw puzzle piece in his memory, making him anxious on a constant basis.)
Whenever I think that Ralph’s cognitive abilities have slipped, I wonder if I am over-analyzing. This testing will tell me if we are maintaining the status quo. But a sliver of me also wants to hear that my perception of Ralph’s condition worsening is correct.
This is not comfortable to admit. I realize it sounds as if I want Ralph’s diagnosis to be worse than it has been. Maybe part of me does; the Purgatory of our current status quo is certainly preferable to the Hell that may well lie ahead, but the gray haze of impermanence is difficult to sustain emotionally. Sometimes I just want to know the worst and get on with it.
Also I can’t help hoping that once we have definitively crossed the River Styx from MCI to Alzheimer’s, Ralph will be more willing to discuss our situation and plan for the future (ie. leaving the farm) in ways he will not consider now—of course I realize that not only is this wishful thinking but dangerous wishing because what is more likely is that once is denial defense system stops working, a spiral of distress will set in.
So I mostly hope that I am wrong, and that he IS holding steady…that as imperfect as things are, we can continue to muddle along as long as we can. Like any couple in a marriage full of ups and downs.
Alice in Memoryland 
I just found “you” and will be joining in. Thank you for sharing – If only we could all have an in person support group.
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So glad you found me. And please add your comments and thoughts as often as you like. I find this online community incredibly supportive, no matter what embarrassing admission I make.
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The care-givee is here again.
I had to chuckle. I guess you care givers hear, “how is he/she doing?” I’m asked, “how are you doing?”, or even, “how are you feeling?” And just like you, Alice, inevitably I tell them I’m about the same but then share my latest tale of forgetfulness. “Well, last week I left the gate open to the back yard and so the dogs had a chance to explore the neighborhood.” Every change is so subtle, every mental stumble either a sign that I simply wasn’t paying attention for a second or that plaques are spreading like Kudzu in my hippocampus.
My re-test process is staring me in the face, with my initial appointment June 6th to talk to the psychologist before 3 more appointment for testing and a final appointment to discuss results. So sometime in July I should get some news.
I’d like to think that I’ll be one of the lucky ones, that the results will show that my cognitive performance has returned to normal, but the tales of forgetfulness are too many. Sometimes I think I’m forgetting names more than ever, and I almost had to change my shorts last week when I realized that in frustration I had blurted out “the thing you put dirty clothes in” when I couldn’t remember that it was called a clothes hamper. Aphasia?
When you write that a sliver of you wants confirmation that Ralph is worsening, I understand that. There are moments when I feel the same about myself and my own upcoming tests. Although I realize nearly all of the time how much better it would be to hear “no change,” a fatalistic sliver of me just wants to get it over with. Let’s go see Dr. Demento now so I can stop analyzing and worrying and wondering; so I can stop fighting, no more Sudoku, no more Lumosity games, and just surrender to it.
Today is definitely one of those days when I want to hear “no change,” though. My wife and I are off in our RV for a Memorial Day Weekend adventure in a couple of hours to camp in the wilds of Pennsylvania. If I don’t get us lost and we don’t get eaten by a bear, it’s the kind of thing I’d like to do with her a hundred times before I forget who she is. Hope you all have a great weekend, too!
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I am going to be rooting for you, both against the bear and on June 6. Not sure which is scarier, but your ability to laugh is as crucial (well not against the bear) as your self-awareness. I love the dialogue we create between caregiver and givee, a dialogue that is harder when both are spouses…
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I was quite moved by your post. I hope you don’t mind, but I put a link to this post within my blog.
The need to know how things are going to play out is very strong. I am a planner by nature, but this is something that has so much uncertainty.
“Sometimes I just want to know the worse and get on with it.” Yes! I so relate to this. I like Jan’s comment above about the slow limbo that has no good outcome.
We’re in this together, and that sure does help.
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I hear you. It’s possible to think that a “rapidly progressing” disease is the worst thing, but I’m finding that this very very slowly progressing disease has me reflecting on much of what you’re talking about – a really slow limbo with absolutely no good outcome. If an evaluation reveals little change, or a lot of change, each has it’s dilemmas for the caregiver/spouse.
There are ways to get perspective, and to stay motivated, some of the time, but the truth is still it’s a project with a steady decline in the forecast.
Thanks for writing.
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Thanks, you are expressing my experience exactly.
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You are really stuck in limbo until the next assessment. Try not to worry about it until it happens.
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Truly a dilemma — all the uncertainty — the functional fluctuations — the questioning.. I think it’s only natural that you would waiver in your perceptions. Expect the coming status assessment will at least establish another new baseline whether or not changed from before. Continue to care for yourself.
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What an absolutely accurate description you’ve written about the situation in which you find yourself, in between status appointments…”the gray haze of impermanence is difficult to sustain emotionally.” Completely agree.
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And yet I know how much worse I could have it. Thanks for your comment…
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