Life is a mercurial, unpredictable thing. One day, confidence blossoms and hope flourishes, and the next seems drowned in despair. I suspect there isn’t a path more susceptible to this constant swing between bliss and terror than that walked by the Alzheimer’s family.
The only thing that has kept the despair from winning for the last year-and-a-half is our unwavering (though occasionally difficult to maintain) conviction that life happens for us rather than to us. We believe that this perspective allows us to maintain that hope and confidence in the face of deepest despair.
Still, it can be very easy to get caught up in the angst and anxiety of life, especially when you’ve been through eighteen-plus months of what Jacquelynn has been enduring, and while I would NEVER equate my hurdles as her husband and caregiver with what she’s combatted (and is triumphing over), I can get sucked into the fear and desperation pretty quickly myself. Earlier this week, on Sunday I believe, I realized that something vital and unshakeably important was missing, and I vowed to her to do whatever I could to help return an aspect of it to her (and our) daily life.
That single, vital quality, is fun.
Not “hey look, a sitcom episode we’ve seen eleven times already; there are two funny lines in this one”, but genuine fun. Because, when you get down to it, just what the hell is life for, anyway? If it’s not FUN, why the fuck are we working so hard to preserve and extend it?
Life without fun is life without the experience of it’s single greatest reward; enjoyment of life for life’s sake.
So, late Sunday evening, as we were attempting to get to sleep and Jacquelynn was fighting tears yet again, as I held her head close to my chest and stroked her hair, I promised her that I would make the return of fun a top priority going forward.
Our daily regimen hasn’t changed dramatically as a result, but the atmosphere in the house (even with our air conditioner on the fritz!) is significantly lighter, and aside from a couple of instances of waking up from bad dreams, no (sad) tears at all.
We went to the local SPCA and played with puppies.
She laughed until her sides hurt and tears of mirth ran down her face when I accidentally farted while struggling to get up off the floor.
She has laughed at jokes (and made a few of her own!) rather than simply feigning a reaction to my lame humor.
She grabbed my butt when I was setting up her dinner tray.
Other things have happened as well. I have seen what I refer to as “Old Jacquelynn”, signs of the strong and strident personality I fell in love with so long ago, reasserting herself. As if she’s been struggling to claw her way to the surface, and finally the barrier is thin enough that she can see the light:
We were showering, and when I turn the water off, I have over the last year-and-a-half, grown used to her “Brrr” and a slightly accusatory tone/remark about the chill. This time, however, I was outright shocked when Old Jacquelynn emitted her trademark “BUUURRRRAAAHHHHH!!!”, followed by a chuckle (and another unexpected grab for my tush). It was SO Jacquelynn circa 2010 that I was momentarily stunned. Then she was there, smiling at me with mischief in her eyes and actively drying herself off. She’s done this a few more times since; feeling chilled when she crawls out of bed to go to the restroom in the middle of the night, for instance. It always makes me smile, and going forward I suspect it always will.
Obviously, I did a TON of reading early on about dementias and Alzheimer’s and their progression and effects on people. One thing that seems more-or-less universal is patients settling into “comfort zones”, or routine behaviors. These behaviors or habits become so ingrained as to eventually be essentially cast-in-stone; patients never waiver from nor break out of these ruts, because they’re perceived as safe and familiar.
Jacquelynn has a couple such habits. The first one to develop was in regards to using the bathroom; she would use ONLY the toilet in the master bath. Not the downstairs guest bath, nor the upstairs hall bath, but only the master suite. When I’ve occasionally suggested one or the other, I’ve been met with resistance bordering on anger, so I’ve simply left well enough alone; one thing you learn is to pick your battles, and this one didn’t seem nearly worth the investment.
So imagine my surprise when, just this Wednesday morning, as she was finishing her morning ride on the exercise bike, she gestured toward the downstairs guest toilet and said: “I’m just going to go in there for a minute.” Yes, I helped her negotiate the “unfamiliar” layout, but she never expressed any discomfort or wavered on her decision.
Before you jump to the conclusion that it was just too urgent a need to make the trek upstairs, understand that has NEVER stopped her before. She’s even had a couple of accidents because she was determined to go upstairs.
She is now using the downstairs toilet almost daily, though she is still going upstairs most of the time. According to my research, these ruts are almost never overcome. One “unbreakable” barrier broken.
That thinning barrier is providing “Old Jacquelynn” ever greater access. She’s digging through as we were told never to expect, and I can see the day in the relatively near future where she is once more everpresent. We’re beginning a Reiki energy regimen this week, and I am confident that it will produce eye-opening results.
You’ll know it here first.