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.
6 thoughts on “Moment of Reflection: Where We are On Our Alzheimer’s Journey”
I actually read your post when it first came into my email and have been thinking about over the last few days. The not knowing what’s next is difficult, especially when you know it’s not going to be good. I hope Ralph stays on the the current plateau for a while longer.
By the time we had a diagnosis for dad – it took over two years – he had almost gone beyond caring. Occasionally he spoke about it, but on the whole, it appeared he didn’t dwell on it, though I’m sure he did think about it. He was such a calm, unruffled person before dementia and seemed to carry on with that trait. I do wonder, though, if that was a mask. We’ll never know. I hate the thought that he might have been sad/fearful and unable to articulate his fears.
Thanks for sharing, Mary. I always love hearing about your dad. Have you read Everyone Brave is Forgiven by Chris Cleves. It is a WWII novel and the hero reminds me of your father as I imagine him when a young man. As for you concern that he masked his darker feelings at the end, we never really know what even those we are closest to feel and think, dementia or no dementia. That’s what I tell myself anyway when I begin to obsess about Ralph’s passivity.
My heart continues to go out to you. I am in the same boat. Loneliness is a big problem for me. My life is on hold. My husband has multiple medical conditions and denies his dementia.
He is not a nice person anymore. Husband was in the mental health profession and this makes it worse.
Thanks for writing. Reading your note made me remember that others have much more difficult situations, like yours to deal with. We are almost in reverse situations. Ralph wasn’t a particulary nice husband but he is now. Should I be glad or should I be sad that he has lost his identity? In your case, there is no question that you (and your husband) have experienced a terrible loss in every way. I am so so sorry.
Wow, you nailed Purgatory, and also the Plateau, where we also find ourselves now – where memory is not actually getting much worse, but the passivity, lack of initiative, and almost mellowness are setting in big time.
Thanks for this, Alice.
It sounds as if we are very much in the same place these days. A weird place to be for all involved because it is so unquantifiable.