There are days, many days in fact, when I wonder if I have imagined Jacquelynn’s progress and improvement. Days when she struggles for her words so badly; when communicating even the most basic concept seems infuriatingly just beyond her reach; days that find her so dejected and defeated-seeming that I truly think it all may have been just the cruelest of wishful thinking.
Then there are the Miracle Days. These are the days on which I kick myself for ever allowing myself to doubt, for my own all-too-human weakness. It’s on these days when I can barely breathe between noting and relating to her the new, long-lost, exciting and watershed moments as she continually demonstrates, all unknowingly, cognition and brain function unseen for more than a year.
Yes, I get weak. I cry myself to a semblance of sleep or simply lie awake all night, too tired to read and too wracked with despair to close my eyes and invite the nightmares in again. But these nights are fewer and further between than used to be the case, and they get rarer as time flows on.
In complete candor, if I had imagined her progress and improvements, she’d be dead or institutionalized by now. But she is getting better.
She has better endurance on the exercise bicycle now than I do. Granted, I pedal faster and with higher resistance levels, but she outlasts me every time. There are simple things, too; simple automatic, unthinking muscular-memory things which have quietly but sharply improved. For example, ever since her shoulder injury and subsequent physical therapy in 2016, Jacquelynn has had very limited flexibility in her right shoulder. So, I help her into her jackets which she wears constantly around the house (her weight is still quite low, and she gets chilled very easily). The normal procedure has always been as follows:
- 1) guide her right arm into the sleeve
- 2) from behind, reach in front of her and guide her left arm down from its constant position against her chest (as if huddled against the chill), and help if into the sleeve, and
- 3) move around front to straighten the jacket and ask for a kiss.
As of about two weeks ago, one step has been eliminated; now, as I pull the jacket around her back, she’s already reaching back with her left arm, feeling around for the sleeve.
Maybe it sounds insignificant to you, but please trust me, it’s actually a pretty big deal.
Also a big deal is childhood memories reasserting themselves. Jacquelynn has NEVER been a person to speak about her childhood. She has long claimed to remember essentially none of it, save for her versions of stories her parents told over the years. She has always been very closed off about it, leading me to suspect that there may have been some abuse or trauma hidden in her past.
Perhaps I was wrong, though. For recently, we’ll be watching a television show or just talking and something will strike her in a familiar way and she’ll relate to me an anecdote from her youth. Amazingly (to me, anyway), she’ll often do this with little or no difficulty in finding words or even names (typically the hardest part for her), too.
But with each memory of home and family also comes more hurt. She is crushed by her mother’s unwillingness to be of any help whatsoever, and every time it comes up, the hurt and rage seem fit to tear her apart. As many times as I beg her just to drop it, I remind her that her mom’s path is her own and irrelevant to us, invariably something will remind her of it again soon, and it will begin anew.
Can you even imagine? Could you ever just write off your own child? Regardless of the antipathy that has always existed between them, could you ever hear “your daughter has Alzheimer’s and needs your help” and refuse? Even if you had more money than you could ever need or spend?
I apologize. Not the time or place. But I’m leaving it here so you can see inside just that little bit deeper. So you can understand the hurt and shame that I feel when I post and repost our GoFundMe link.
It has been an odd and busy few weeks, and it looks to get odder and busier as I work to find a way to delay the need to return to work full-time and remain home where I’m needed.
Wish us luck, would you?