The Emptiness At The Top Of The Stairs

Bedtime. I HATE this.

I’d normally have been asleep at least an hour ago, but I’ve been putting it off much longer than I should. It is just so difficult to even think about going up there without her.

You know, although we had lived together for fifteen years at that point, it wasn’t until Jacquelynn got really ill and became afraid to sleep alone (afraid to awaken alone, more accurately) that we finally began sharing a room. We had kept very different schedules with me rising at 4 a.m. to get in as much artwork as possible prior to leaving for work, then trying very hard to sleep in a bit on days off. So it seems odd to me that after only a couple of years of actually sleeping together, the prospect of coming upstairs to go to bed when she’s not here fills me with dread. Even when she’s been hospitalized for a few days, I’ve always just slept downstairs in the recliner, but there’s no real rest to be had there. I need a bed, and this is the only mattress less than 20 years old in the house.

But it’s also haunted. Haunted with emptiness. There’s a dog lying there now, and unlike just a week ago, he won’t get up and move to several spots on the floor before reclaiming his bed spot then jumping down to get a drink only to fall asleep on the laundry pile. No, he’ll sleep in the spot that smells like Jacquelynn, shifting his position only once or twice all night. And I’ll wake up suddenly half-a-dozen times overnight, thinking I hear her voice or I’ve felt her get up. There is a hole in the bed now; a hole in the room. A hole in our lives.

Her permanent status will hopefully get sorted this week. While she’s been in the hospital these last 8 days, I’ve been through an incredible roller-coaster ride with insurance cancelations and reimbursements, new policies and hospital savings programs. Medicaid approval went from maybe to all-but-assured to not-gonna-happen and full circle to a solid probably, all while I toured available memory care facilities. Those also caused their own terrifying ups-and-downs with options ranging from Stephen King-esque to home-towny and maybe-a-little-too-informal. But a selection was made, and if it all works out and that’s where she goes for now (I can always move her if either of us are unhappy with the choice. I’ll certainly keep looking and if I see something better and closer to home, I’ll get her on a waiting list right away) when the doctors are confident that her kidney and bladder function are reliably normalized.

It’s not going to get any easier, transitioning her into a care facility. There will inevitably be a period of anger and feeling of betrayal, but I’m constantly reassured that it will fade, especially as her recall weakens. And I’ll eventually be able to be the Husband once more, rather than the Caregiver.

I must admit, that is a very hopeful idea, and just now, hope is a wonderful thing.

Shit Continues To Roll Downhill

Jacquelynn is admitted to the hospital as I type this. After a (relatively) terrific Saturday, she could neither get nor stay settled today, and (yes, I’m leaving out a LOT of detail for now) she had a bit of a break. In short, she suddenly decided she was a little girl (I’ve kinda seen that part coming for a while; there are constant references to “a little girl” in her mumblings) and that I had stolen her from her home. We were in the car, so I took us home, and her mood and state of mind shifted constantly on the way, but when we entered the driveway, she didn’t recognize the house and thought I was going to force her inside and harm her. So, we stayed in the car while I called 911. Since she can’t reliably manipulate the door handles or the seat belt, I figured she was safest right there until the medics arrived. They know her by now (fourth or fifth visit for this reason), and had her on her way in no time.

Sky (the dog) was NOT happy to see her go. His last owner died in the home and I’m certain a lot of this was frighteningly familiar to him.

Officially, she has another relatively severe kidney infection, which is why she’s been admitted. The hope is that we can get a few other tests and evaluations taken care of while she’s there and that maybe I can manage one halfway decent night’s sleep. Not taking bets on either, honestly. While she was fairly calm with the medics, and apparently with the hospital stall as well, to begin with, she flipped her switch at some point while I was in conference with the caseworker and they had to sedate her. Last she said, she had no desire whatsoever to see me, so on the advice of the docs, I came home to rest and take care of Mr. Sky.
This is the beginning of the end for her living at home, though. All the people involved are shocked she seems so well-taken-care-of, given the time I’ve been essentially on my own at this, but they all also totally agree that she needs 24-hr professional care. I just need to complete the Medicaid process and get my guardianship petition approved.
Say a prayer or three for us, if you do that sort of thing. Otherwise, I’m grateful for every bright and loving thought you can send up.

Thank you.

Matthew

A New Level Of Peril

Jacquelynn has a dear friend in Washington. They met when Jacquelynn had traveled there on business, and formed a friendship that had maintained through Christmas cards and emails (mainly on the friend’s part) through nearly a decade.
Recently I located this friend online and reignited their acquaintance. They’ve spoken on the phone a couple of times and I’ve kept the friend informed as to Jacquelynn’s health and condition. She was even kind enough to extend an invitation, should Jacquelynn’s health improve to the point that she’s safe to travel.
That invitation was issued weeks ago, with vague talk of possibly visiting sometime in July. Yesterday, Jacquelynn decided out of the blue that she was going now. My assurances that, once her health had improved enough to travel safely, we would make the arrangements fell on deaf ears. She’s as healthy as ever now, and the only reason people think she’s sick is because I’ve been telling them so.
Which leads us to today; she’s currently furious, stalking about the house, muttering about how evil I am and insisting that she has “One one, one one one monies” to counter my insistence that we can’t afford to travel now.

For the first time in longer than I can recall, last night’s and this morning’s restroom trips were completely without incident. I knew it wouldn’t last, but this new manifestation has some frightening potential; her newfound desperation to escape could spell greatly heightened difficulty at home. She’s already done one thing this morning that hadn’t happened for ages by coming down the stairs all on her own; she’s been too terrified to even get close to the edge without assistance for many months. That, along with her inability to unlock doors, is the only thing that’s allowed me to relax even a little when she was cross about wanting out. I can’t afford to trust those limits now, so a greatly elevated level of awareness will be necessary going forward.

I cannot allow myself to forget that, behind all this, is a genius-level IQ wrapped in an incredibly devious container.

I’m afraid we may be at a new level of peril now.

“Why…?!”

Imagine, if you can, helping your wife (I apologize for the gender specificity, but such is our story) to the restroom in the morning. Doesn’t sound so bad, I guess. At least not out of context. Now, imagine that she can’t remember how to position herself on the toilet, so you have to help her arrange her approach, pulling her pants down, and guiding her when and where to sit. Nothing we all wouldn’t gladly do for the one we love, eh? Just to shake things up now, imagine how much fun this would all be if she suddenly and unpredictably flips an internal switch and BOOM doesn’t trust or know you at all? She has to go so badly that she’s in tears from the effort to hold it, but is 100% convinced that you mean her harm, so she refuses any and all assistance from you, crying and batting you away with weeping pleas of “why?”. You want to calm and assuage her fears; you want to bring her back to peace and help her to relieve herself safely and comfortably, and you really don’t wanna deal with another puddle of piss and shit, trying to clean her off while she weeps and resists the intimate and invasive touches of a stranger she is legitimately afraid of and intimidated by. Those stains don’t come out of a memory foam mattress, by the way. No matter what the care instructions say.
Let me throw in one more wrinkle; while she doesn’t consciously know you, she has spent the last twenty years learning how best to pick at you, and she knows instinctively by now just what to say to most quickly and effectively piss you off. She knows your tender spots, and she ain’t afraid to use them against you. Normally, you would be able to compartmentalize the experience and act from the fact that this isn’t really her doing and saying these cruel, horrible things. It’s the disease, all the experts tell you to remember. But you’ve been at this for two years now, and haven’t really slept sufficiently in months, so your skin is pretty thin and your judgment is for crap.

This is every morning for us now. Often, multiple times per morning. No rules that it can’t happen this way at 2:30 in the afternoon, either. Or at Walmart.