Tag Archives: Alzheimer’s passivity

Alzheimer’s Shrinks Ralph’s World and Ralph

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I have been focused a lot recently on my reactions to Ralph’s slide along the Alzheimer’s continuum. But after a weekend apart, I am struck anew how much Ralph’s world has changed.

His memory seems to be holding, at least as far as facts are concerned. Not that it is good or anything like normal, but it remains generally on the same plateau it’s sat on for a while now. He repeats himself; he asks the same questions over and over. He remembers certain details from a conversation and obsesses on them. And he repeatedly forgets not only conversations but also what might seem large basic facts. While I was away he spoke on the phone to a friend who was disturbed that Ralph seemed to think I was home. “He’s never seemed confused that way before,” she said to me with concern. His forgetting can seem like confusion, but really it is not. When he called me to ask me to pick up some dog food (which I had forgotten to do before leaving for the weekend) and I joked that I could get the dog food in New Orleans, he laughed and admitted he’d forgotten and then went on with following his daily routine “life list” perfectly well.

But while he has remained on this memory plateau, the sands have been shifting beneath him. The lack of memory has changed who he is.

So while I would define his forgetting for the moment that I was not in town as a memory problem, not a confusion problem, I have seen him confused, and I think he is more prone to confusion than he used to be. When he can’t remember, he grows anxious, and when he grows anxious he has even more trouble remembering. A spiral top starts spinning. Similarly, sometimes he can’t grasp what I’m trying to explain because his anxiety about not understanding twists him into an emotional knot. (And I realize that when I talk to others now, I tend to over-explain out of habit, but that’s another subject.)

He is also fearful–in part because his weakening memory leaves him uncertain from moment to moment, but also because he’s become a person with a very limited world and like many confined to limited worlds he has a fear of the unknown.

And hand in hand with fear is a sluggish passivity, a disinterest in what lies beyond the immediate scope of his memory . He has less and less physical, mental or emotional energy to engage with others. I have noticed that his sister and oldest son, both of whom  used to talk to Ralph frequently and enthusiastically, seldom call now. And I understand. It is hard to talk to someone who only wants to repeat the same few conversations over and over. Patience wears thin. People have their own lives to get on with.

Of course, I often resent and feel trapped by Ralph’s limitations myself. But today I am sad–for Ralph and for how his identity is being chipped away in small but steady increments. Does he know? I’m not sure. It feels as if I were watching the act of sculpture in reverse—the vibrant image of a man being returned to stone in slow motion.

The Zest Deficit– Cognitive Impairment is More Than a Loss of Memory

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I spent last weekend in NYC, visiting my son and old friends, going to restaurants and museums, carrying on lively conversations about politics, art and philosophy. I came home five pounds heavier but energized, reminded that there was a world out there and I was part of it.

I almost added to the above paragraph, “Also guilty” because that has usually been the companion feeling when I enjoy myself without Ralph. But I am not sure I did/do feel guilty. Pre-Alzheimer’s spectrum Ralph would have wanted to share that energy, would have been jealous that I was getting to have experiences without him, would have missed me, would have made me feel guilty. Ralph as the person he is now does not feel as if he’s missing anything when I go out into the world without him. He is thoroughly content to sit in his “office” or in his porch rocker or at the kitchen table as long as his dogs, his cigarettes and either his beer or coffee are nearby. When I walk in the door, he is glad to see me but more interested in returning to his chair or to bed.

Still having been gone a few days having fun, I wanted to offer a nice meal to Ralph last night. I asked if he’d like anything special for dinner. I am a pretty good cook, and Ralph used to have very definite ideas of what he liked to eat and very large appetite. Eating was always one of the bedrocks of our relationship. We shared an enthusiasm for trying out the newest, most cutting edge restaurants in any city we visited. For choosing the most exotic and/or spiciest choices on any menu. And for experimenting at home with made up recipes.

“Whatever is easiest,” Ralph said last night, as he has said every time I’ve asked lately.

No suggestion I made could draw any enthusiasm. So I threw some leftovers together and was done with it.

We woke this morning to a beautiful fall day. Dry but not too dry, a few clouds in the blue sky, a slight wind ruffling branches still full of green leaves, the temperature in the temperate 70s. The perfect day for a walk.

I asked Ralph if he’d like to take one with me.

“Not really.” He wasn’t being mean. He just wasn’t interested.

Ralph used to walk every day. I was the lazy one he had to drag along.

Along with a loss in memory has come what I can only call a loss for the zest Ralph used to take in life’s small pleasures. Yes, witnessing this change makes me sad, but I have to acknowledge that Ralph is not sad. He is content. I am the one who feels discontent. When I throw a slapdash dinner together or skip a walk for lack of a human companion—and I do both with more regularity than I like to admit—I feel that I am letting myself be diminished, or more honestly, am diminishing myself. It scares me how easy I find it to sink into the featherbed of sloth. Am I using Ralph as an excuse or is Ralph’s condition wearing me down? I’m not sure, but the fact is that my new normal is the color gray. (In fact, I actually found myself thinking last night that I wanted to reupholster the living room chair in gray fabric.)

The New York weekend reminded me that highs are still out there to experience. Of course, so are lows. For Ralph, he’s found peace in passivity as his world shrinks. I have to decide whether I let my world shrink too.

Meanwhile, I think I’ll take that walk with Lola the dog now.

Moment of Reflection: Where We are On Our Alzheimer’s Journey

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Last week I had the opportunity to speak on a panel about caregiving in to a group of nurses and nursing students at Emory University in a conversation titled Lived Experiences in Coping. The other two members of the panel, the wife of a man with Parkinson’s and a woman who has MS, were actually nurses themselves so I was a bit intimidated at first, but I think I held my own (although I fear I went beyond my 15 minute time limit). And it was a fascinating morning as we shared perspectives and answered questions from the professionals who asked over and over what they could do to improve the care experience.

As valuable as the meeting was, what was most useful to me was the preparation. In the invitation to speak I was asked to discuss how we arrive at Ralph’s diagnosis, and how the news and illness trajectory have affected my and Ralph’s lives.

Not surprising questions or ones I haven’t thought about in the past, but ones I have avoided thinking about for a while. I used to take stock regularly to keep perspective, but lately it’s been easier (i.e. less scary or anxiety producing) just to rock along day by day without considering the long picture and the implication Being asked to talk at a symposium forced me into that area of necessary discomfort.

So what I jotted down:

Diagnosis came in 2013. Before that I didn’t want to think his memory problem was serious in part because his failing memory coincided with a personality change I liked. In fact I realize that for those few pre-diagnosis years we were in a SECOND HONEYMOON—he was less angry than he had been as a younger man and a sweetness emerged that he had not shown before. If he was secretly stressed, I didn’t choose to notice.

Then for maybe six months before the diagnosis, Ralph went from forgetful to what I found at the time annoyingly inattentive. I thought he wasn’t paying attention when I had to repeat things over and over. And he was often argumentative at night, so we went to bed angry at each other, but while I’d wake up still angry, he’d wake up denying there’d been any friction the night before. But still we were closer than we’d been for years.

Then his memory tripped him up more obviously—I have written about the fishing trip that made him realize something might really be wrong because he couldn’t keep up with the other guys—and he saw our family doctor who sent us for tests. Ralph and I were convinced he had Lyme’s disease.

Between taking the tests and learning the results we went from honeymoon to LIMBO. In real time I am only talking about a month or two from test to first diagnosis and another three months until we saw Dr. Lah at Emory’s Brain Clinic. But the period felt much longer—one of those crucial moments in time that stretches as if time has slowed down to allow for the heavy significance. We didn’t know much about Alzheimer’s. We were both anxious. Neither of us knew exactly what to expect but we were talking about it A LOT. I remember a car trip, six hours talking away, feeling oddly close as we faced an uncertain future together, both of nervous but open and oddly upbeat. The ride was actually kind of fun.

Then we got the diagnosis and went from Limbo to PURGATORY. One day he was one person, the next he was someone else. Not that his condition changed, but one it was NAMED, it was much more scary. Suddenly he was terribly, terribly anxious and suddenly I felt the need to limit plans, to take over his business (and close it), to act as a buffer between Ralph and all the people who didn’t know he had an actual condition that was causing him to act certain ways. Purgatory lasted for a long while. He seemed to slip dramatically and then, once he began his drug regimen, he regained some ground, only to slip a little more over time. His memory did not get worse—it was already terrible in the first tests—but slowly other aspects of the Alzheimer’s spectrum showed up, like passivity, lack of time awareness, loss of sense of direction, withdrawal from the world, and a general malaise along with the frankly beneficial loss of memory of all arguments and disagreements as he embraces those with whom he had fallings out. My symptoms as caregiver also showed up—greater impatience and loneliness balanced by a kind of desperate energy and new to me gregariousness as well as moments of patience I didn’t think I could manage.

For a while now, we have been on a PLATEAU. Ralph has been holding steady more or less. Some days he’s more with it than others. But I can’t really see much difference from week to week.

The big difference is in expectations. It’s not that I have bad ones. Or not exactly. I have none at all. The rule of thumb is that Alzheimer’s progresses, but the rate is so varied that I have no clue how it will progress in our case, what route it will take or how long. But I do know that when we move from this plateau, the next stage will not be good.