Dinners, Date Nights, and Grabbing Every Opportunity

Friday night dinners used to be a big deal for Jacquelynn and I. When she was on her last couple of jobs from maybe 2008-2012, I was selling cars and had Fridays off. So I made a fuss for her and there was almost always something special awaiting her when she arrived home.
From very technical Italian dishes to pan-seared pork loin to grilled mahi-mahi with a pineapple glaze, I often labored most of the day to surprise her. I usually also did an elaborate scratch dessert of some kind (her favorite may have been the key lime meringue cookies), too.

But once in a while, frequently on days when I either had to or chose to work a few hours that day, I’d meet her at home with a large, thin crust Donato’s double pepperoni pizza. The one they call “The 150” today, always with an ice-cold Mexican Coca-Cola*.
This treat always made her smile, and the act of kicking off her shoes and plopping down on the sofa for dinner was a catharsis all its own.

Today, I did my best to bring this experience back to her. I brought The 150 and 2 half-frozen glass bottles of real-sugar Coke to the nursing home with me and we had a blast. Keeping in mind that Jacquelynn hadn’t had a carbonated beverage of any sort for nearly two years, it was HILARIOUS watching her sip that sharp, tart pop, and she hammed it up royally, mimicking fireworks and hooting like a chimp when she drank. I haven’t laughed with her like that in longer than I can recall, and watching the joy split her face in such a huge smile truly warmed my soul.

But even as I smiled and laughed along with her and fed her bite after bite of Donato’s finest, I took mournful note of how her condition continues to deteriorate. She’s unable to hold herself up in a seated position now and always leans sharply to her right. Even when straightened up and leaned to the left, she’ll very shortly have her right shoulder buried into the arm of the wheelchair and her head listing so far to the right that it’s almost parallel to the floor. She was moving about gleefully and waving her arms a bit as she ate and sipped her Coke, but when she relaxed, she reminded me more of Stephen Hawking than my wife, slumped almost bonelessly into her chair. It’s affecting the way she gets around, too; she has considerable difficulty “pedaling” her chair down the hall, constantly pulling to the right like a car with a flat tire.  I’ve spoken to her nurse and she’s going to consult with Occupational Therapy to see if there’s any way to help her realign or to better support her in the chair. I did bring in one of her donut pillows to put inside the right arm of the wheelchair so as to provide her some level of support and prevent injuring her now very thin and bony arm.

For this reason and many more, we’re going to begin a regular “Date Night” starting next week. I’m going to load her in the car and take her out of there for an hour or two once a week; maybe get her an ice cream or a burger, or maybe just go tour the mall and get an Orange Julius. Who knows? But we’re going to spend some quality time together, and I’m going to remind her that she’s human and loved and NOT a prisoner in that place.

I don’t know how many such date nights we’re going to get, so I’m going to maximize our opportunities.

*The Coke imported from Mexico uses real sugar rather than corn syrup, and just tastes SO much better and sharper than the domestic version. It’s in glass bottles, too!

NOT Saving Jacquelynn

I haven’t posted here for a while, and there’s a reason for it.

The title of this page, “Saving Jacquelynn” was more than a title; it was an overriding goal. It was the sole focus of my existence; to bring her back from the brink of obliteration from the most terrifying and fastest-growing threat to the human mind.
But it was not to be.
I did not “Save Jacquelynn”. I no longer believe her path was one from which she could be “saved”, and I’m just now struggling to embrace the concept that this may not be my failure. It feels like my failure, though. When Sky (our rescue dog; more on him in a later post) and I visit her at the nursing home for breakfast and she only gets halfway through the meal before she flips her internal switch and starts shouting that she hates us and wants us to leave NOW, I know it isn’t really her…
…but it still feels like my failure.
Jacquelynn’s condition has plummeted dramatically since the beginning of the year, when I was so confident and so excited about the improvement and progress she was making. She struggles to speak at all, with only a tiny percentage of her utterances being actual words. She recognizes us most of the time, but often dismisses Sky, asking instead for her “pupup”. She may be looking for one of the dogs she so loved from her youth, as we’ve only had Sky for a few months.
In the six weeks she’s been in the home, she’s turned an initial (and very welcome) weight gain into another drastic loss, coming in under 90lbs now. The only things she’ll eat reliably are her yogurt and the “Magic Cup”, a supplement-laced ice-cream-like dessert. The initial issues with frequent falls have been mostly overcome with large bumper-like pillows on either side of her, tucked into the fitted sheets so she can’t kick them off. She has regained enough strength, however, to get most of the way out of the bed on her own again, so I’m hoping falls won’t become a problem again. She can almost stand on her own, and can, with support, walk a few short steps from her bed to the wheelchair. While any resurgence of vitality is wonderful, it also carries an elevated risk as she begins to decide to act on her own again, before her body is truly ready. Also, since she can “flip her switch” from pleasant to violent in an instant, any increase in mobility comes with a commensurate increase in likelihood she’ll try to leave there as she did here so many times.
But for now, as she faces yet another bladder infection and we make plans for a procedure which will hopefully help to limit the occurrence of such infections moving forward, for now, Sky and I visit for breakfast every day as I bring in her fresh laundry and take yesterday’s clothes home to wash. We also visit for dinner most days, unless I have afternoon commitments (doctor’s appointments for me, of Sky’s AKC classes, for instance). Some days are loving and fun, others (particularly during an infection) can be traumatic for all involved.
And we will continue to visit. I will advocate for her and oversee her care, holding the facility to the highest standard possible. I will eventually fully embrace, both intellectually and emotionally, the understanding that this whole vile mess isn’t in any way my fault. Meanwhile, I will cry myself to sleep and lose my composure at the slightest provocation. I will cower in loneliness and continue in my counseling as I pray and meditate each evening.

And I will take great comfort in Sky’s companionship.