Obtaining an Alzheimer’s diagnosis can be a long and winding road. Ours sure was. Come to think of it, I don’t think “winding” is the most apt term for our particular journey. It bore more resemblance to an autumn corn maze--plenty of directional changes, but more than plenty of dead ends.
This is an oft-repeated tale, especially when the diagnosee is on the young side. It is my experience that even doctors, whose effectiveness depends on an ability to objectively analyze a new set of patient data, don’t want to believe that fifty-seven year olds could be in the early stages of dementia. In our case an AD diagnosis came 3 years after we initially consulted a neurologist, and a confirmation that Jeff’s case is a particular rare form--Posterior Cortical Atrophy--came 4 years after that, just this year.
If you’ve been doing the math you’ll have calculated that we first sought help 7 years ago. Now, take that parenthetical sum and add the hefty chunk of time I spent wondering what the heck was up before I actually did something about it. This has been a good exercise. I get 8 plus a fudge factor of...who knows?
That’s about a decade, which we’ll call my forties. Because that’s what it was. My forties. I’ll be fifty in about a month.
Some friends and I were chatting online. One, who just hit forty, wished herself a beautiful decade. I seconded the motion, noting that--all in all--my forties were a little dicey and I was counting on a better fifties.
Now I will be the last person you’ll find making any overly-confident predictions about the karmic barometer of life, but I think I’m right on this one. A quick check of my emotional atmospheric pressure returns a reading that I haven’t seen for a very long time. In fact, the last time I remember feeling this way was at least junior high school and possibly a smidge before that.
It is, actually, less a feeling than the absence of a feeling. I’m going to call it not-an-ion. An ion, as you are indubitably aware, is an atom (of almost anything...pick one) which is either up or down one in electrons, giving it a positive or negative charge. Most atoms don’t really seem to enjoy this condition and will do their darndest to find an oppositely charged counterpart with which they can bond, giving each the set of electrons it prefers. And a partner.
From my teens on I needed a partner. Or at least I wanted one to the extent that it was indistinguishable from need. I found one. I liked it. No more need to quell the anxiety of a charge in search of neutralizing. When Alzheimer’s began its insidious work of dissolving our chemical bond I felt, once again, that pathetic blip of an ionic charge seeking its reciprocal. Only I wasn’t eligible.
The transition of a spouse from partner to caregiver (I don’t mean the jobs you’re carrying out, I mean the actual metamorphosis your sense of self is obligated to undergo,) is possibly the most difficult feature of Alzheimer spousing. An essential psychic vitamin you’ve come to depend on is titrated to zero, as you look around wondering if there’s anything you can possibly replace it with.
Eventually, after much manifestation of vitamin deficiency, maybe your psyche slowly rebuilds itself into one that can manage without that vitamin. Or maybe it doesn’t for some people. As much as we relate to the experiences of our fellow Alzheimer spouses, we also experience this gig uniquely.
I will be a caregiver for a good many more years, more likely than not. But there’s been a shift. Until quite recently I was doing the job, but operating at a deficit. A vitamin deficiency or an errant ionic charge unfulfilled. I’m not at all sorry to see a return of my inner kid--the one who was fine being just her uncoupled self. Uncoupled, yes. Uncommitted, no. It is nicer, I submit, to be a caregiver who is not floundering under the burden of bewildering deprivation.
But let me tell you, it took a long time. What was that number again?
Ions in search of a bond. Let's wish them luck.