The thing about a jigsaw puzzle is: It’s fun while you’re working on it, especially with a companion; it gets particularly exciting as you near completion; once completed, you feel a sense of accomplishment; you enjoy, for a time, viewing the finished product; but then, there’s always that predictable letdown, when your choices for proceeding are:
- Take it all apart and put the pieces back in the box.
- Take it apart and start putting it back together again.
- Go out and buy a new puzzle.
I think there’s a juicy metaphor for life in there somewhere, but I’m just too damned tired to sort it all out and elaborate.
I’m SO tired, in fact, that the actual practice of resting — i.e. ceasing work or movement in order to relax, refresh oneself, or recover strength — has lost all of its meaning for me. Seriously, I’m tired ALL the time, even though, to nearly any active, able-bodied person my entire daily existence would qualify as rest by any definition. And yet, when discussing the scheduling of just about anything — a visit by a friend, a hospice nurse appointment, lighting the Hanukkah candles, etc. — I still catch myself suggesting how I might somehow rest up in preparation, and I chuckle when I realize that, at this point, just about the only thing I can manage that can serve as resting is for me to simply shut up and stop talking for a while.
Meanwhile, all of my mostly-involuntary “resting” means that I not only have zero ability to help out with our many daily household To-Do items, but I actually add numerous items to the To-Do list with all of my needs that I can no longer independently attend to myself.
Hence, my rest creates work for someone else, thereby limiting their available time to rest.
Enter Caregiver Burnout, a VERY common occurrence, a condition that should be anticipated. A plan to prevent burnout is helpful, but a Caregiver should never be blamed or criticized for succumbing, and a more helpful plan would be focused on addressing and ameliorating when it does happen.
Enter Hospice Respite Care, a 5-day stay in a facility where a hospice-eligible patient receives 24/7 care while their Caregiver enjoys a well-earned, guilt-free, restorative break from the responsibilities.
Heretofore Unconsidered Exit Strategy
I’ve mentioned several times here at The Owl Journal, most recently about a month ago, that making the decision as to exactly when and how my life will end, made possible by the fact that ALS is 100% terminal, and by my having qualified for Death With Dignity, is proving to be, by magnitudes, the most difficult decision I’ve ever had to make.
As I’ve said, as a terminal patient, 1.) having the legal right to choose to end my life, and 2.) actually deciding the If and When to do so are two VERY different things.
Well, I was having an online session with my therapist recently, and an idea arose that I had not anticipated.
My therapist is a person who has been very dear to me throughout my ALS journey, someone who understands and supports my hybrid spirituality, someone who has reminded me, when I seemed to need reminding, of the concept of Non-Attachment that’s prevalent in many Eastern religions, someone who has gently challenged me from time to time as to whether or not I was contributing to my suffering by remaining rigidly attached to things I’ve lost and am due to lose at the hands of ALS, not as a justification for berating myself for having attachments, but simply as a way to be mindfully aware.
The earliest examples of attachments I noticed I had were mostly related to the loss of physical ability, given that playing guitar, hiking, cycling, and many other physical activities were central to my identity and to how I fully experienced life. These remain the most painful losses, attempts to let go of the attachment have relieved very little, if any, pain, but at least I fully understand one of the reasons why it’s so painful, and that holds some value.
Back to the therapy session, I was, for nowhere near the first time, describing my struggle to make it through most days with any will left to carry on, while concurrently not being able to decide when to take the life-ending drugs that have been prescribed for me, when suddenly my gaze at my laptop softened and widened, as if I was zooming out a camera or telescope lens. Gradually, my focus moved from my therapist’s eyes, out to details of the room she was in, out farther to where I was aware of my computer’s monitor and keyboard, my blanket-covered legs holding up the laptop, the ottoman on which my legs were resting, the living room, and finally, by extension, the entire house in which I sat, strewn as it is with a million bits of evidence representing the amazing life I’ve lived, and…
…of course I’m freaking attached!
For the approximate 3.5 years since I was diagnosed and made aware of the unavoidable trajectory of the disease, I never once envisioned wanting to die anywhere but in my own home. I’d always hated hospitals, my wife and I had worked hard enough over enough years to be able to afford in-home care, and so, no matter how great the reputation of the local Hospice House, however cozy the rooms are said to be, however friendly and attentive the staff, I never, ever gave it any consideration until…
…I zoomed out that day and looked around me and realized that it might indeed be easier for me to let go and pass away if I weren’t always surrounded, day in and day out, by SO many memories that I’m SO deeply attached to.
Fast Forward a Couple of Days >>
I’m now scheduled for a 5-day respite care stay a week and a half from now at Whatcom Hospice House, a stay that will provide my beloved caregivers, my wife and son, with respite, and it will provide me with an opportunity to test the attachment hypothesis, to determine whether or not I’ll be able to finally let go if I’m there rather than at home.
If the facility passes the test, I’ll likely return there, perhaps as soon as January.
So, maybe that’s why I was feeling stuck: My life puzzle was missing its last piece, the same last piece that all lifeforms share, and perhaps I was unconsciously avoiding that post-completion puzzle letdown.
But, if you think about it, it’s not really a letdown at all.
In fact, after a lifetime of effort, it’s actually kind of the ultimate rest: