Just two weeks ago Karen and I spent the better part of a late afternoon going through the hospice intake process with the intake rep. The three of us sat at the dining room table and Karen shuffled in to join us under her own power and did all of her own talking.
Things, as they say, have changed.
After a couple of mildly terrifying falls (including one in the bathroom where Karen eventually crawled out from the room in order to use our landline to call my cell so I'd come and help her) Karen made her peace with using the walker. That lasted a handful of days and now (after some more scary falls) we have transitioned to using the wheelchair to get her around the house since she no longer has the strength to support herself with the walker. She cannot rise from a sitting position and relies on me to lift her up. If she wants to sit up in bed, I have to cradle her in my arms and move her into position.
She has become so weak she cannot sit down with any control and has to be gently lowered into place. Her growing inability to manage on her own continues to cruelly strip away her independence and has reduced her to relying on me simply to go to the bathroom. I lift her up from our bed and she clutches me as best she can, hands trembling and fingers fluttering erratically on my shoulder obeying the orders of the leptomenigeal-powered misfires in her brain. We negotiate the admittedly awkward and tight passage to our bathroom through a protracted series of tentative, mincing steps that are remarkably akin to that of a toddler just learning to walk. When we reach the bathroom, I set her down, leave the room, and wait for her to call me to retrieve her and return her to bed. A journey that had taken two seconds and maybe five steps at best now requires minutes and dozens of footsteps to complete, provided, of course, she can make it all the way back and doesn't need me to muscle her the last few feet of the way.
Cognitively, she is doing pretty well. There are still stretches where she really cannot maintain a discussion but those instances are primarily the result of the increased dosages of pain meds she is taking. On days where she doesn't need a few buckets of opiods, she is fairly engaged in conversation although she tires quickly. Her fatigue and the nature of her disease do continue to chip away at this however, and even the best conversations involve a generously sized sort of Mad Libs component where you have to guess at words or ideas she can't quite find. When the drugs take over, however, a deep fog settles in, one that is almost impossible to penetrate. In these instances, we nod and smile and agree with whatever she says.
These last two weeks have been defined by a tremendous amount of farewells. Karen's entire family has, one at a time, trekked out here to visit one last time and to say goodbye and my own parents have just left after a few days here. All of our visits have been brief in order to accommodate a couple of off days in between so Karen can recover some strength. We have filled the gaps between visits with calls to old friends--her long-ago roommate from her days in Tucson before we reconnected, long time friends from our time in New York--sharing memories with them before ending the calls with heartfelt goodbyes and declarations of love.
To keep the good times rolling, Karen had her last rites performed just last Sunday. The reverend from her church and some parishioners with whom she is close came over to participate. While the ritual certainly has an unexpected upbeat element, it was hard to see it as much more than just another, more formalized sort of goodbye.
Yesterday was Miranda's 21st birthday so we did our usual family thing, with me making dinner based on Miranda's requests (meatloaf) and cake and presents after. There was laughter, some champagne toasting, and merriment all around. Karen was pretty heavily medicated due to the falls the day before so she was relatively quiet and instead seemed quite content to simply observe, her head pivoting like a tennis fan's as she gazed back and forth and back again with every utterance. Somewhere in there, the fog lifted and she tearily leaned over to me and said "I love you so much." That felt a lot like my goodbye.
Later, after my parents left, Karen had another sliver of cake and asked to be wheeled into the living room so she could watch us play Rock Band 4. The three of us fired up the Xbox and dove right in. Karen was situated just behind us and I'd glance back whenever I could. Half of the time she was lost in the fog but when she wasn't she was smiling and nodding along with the music, dreamily chewing her dessert. But then I'd turn back to follow the music and she'd be, in a way, gone and we'd just have to take it on faith that her support was still there behind us while we played on.
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