I will give no hostages to love, refusing to foster the obligation to care for me (or debate my healthcare choices) as my COPD worsens.
As we’re going through the process of getting to know one another to see if we’ll be a match for life coaching / change management / grief counseling (the COPD resources recommended a talk therapist as part of the care team one should have in their arsenal for dealing with quality of life / end of life issues), my therapist recommended that I read this book so that we could talk about it in our next session and get to know each other better.
So, I’m working my way through the book (audio version, since my eyes get too tired to read much at this point), and I’m not finding a lot that’s surprising.
Basically, doctors and mainstream America seem to feel the responsibility to provide “life at any cost”, and our nursing home system has tried to automate the care of our elderly to regimented schedules vs. when the care might actually be helpful (i.e., helping an elder to the bathroom 20 times in a day, vs. putting them on a schedule (which fails) and then moving them into a diaper as people’s bodies have their own schedules).
These are all things I know, having spent most of the first 5 years of my life in and out of hospitals, and experienced the “inconvenience” of my body’s desires and needs at the not-to-tender mercy of good and bad nurses and doctors.
Due to this first-hand exposure to the best and worst of human nature while in the trenches, I have willfully chosen to remain single, refusing to give into the expectation for momentary companionship which evolves to becomes a socially accepted obligation. I want no one dragged down by the bonds of love or duty at my side when my final journey is at hand.
I have willfully chosen to move away from my family and their extended bonds of obligation, knowing first-hand how poisonous obligation and love can be when dealing with the reality of a handicapped, frail or disabled loved one.
I’ve seen too many familial bonds turned to torture for the surviving spouse and children, and so I made and kept a promise to myself to always be independent so that my final hours, whenever they may be, are a burden to no one who doesn’t choose to be there, even if it’s for some reason as practical as a paycheck.
That’s not to say that I haven’t and don’t have friends and lovers, but merely to underline the refusal to tie them to me through entitlement brought on by the demands of physical frailty.
Everyone makes that final journey alone, regardless of the family and loved ones who surround them, and I guess that I’m a little more cold or honest in my acceptance of those limitations.
As discussed with the talk therapist this week, I want “palliative care” vs. aggressive care. My body, a refurbished and dilapidated carcass, is doing it’s best to keep on humming along, and I want no extraordinary measures (such as a lung transplant) when the end result could be worse health than I enjoy right now. Society, however, doesn’t know what do to with me because I don’t fit neatly into the box of what an ill or old person should be.
Palliative care is rarely discussed, and almost seems to be treated as a “cowardly” choice for someone my age. No, I’m not suicial or depressed, just practical and tired.
I’m only 55, and statistics say that a healthy person my age, a woman, could live to at least 80. What the statistics forget is that I’m not a healthy woman. I’ve never been a healthy woman. Why waste time regimenting my life based on a theory – optimum health – that has NEVER been my reality?
No answers here, however, our next appointment should provide some stimulating conversation (and I might even find out what happened to her right eye, which is a bit sqinty and misshapen compared to her left eye). Yes, I really am that nosey – I want to know more about my therapist and her motivation and world view than having the talk therapy appointments be a 1-way, narcissistic conversation that’s all about me.
Anyone else read this book and want to weigh in with an opinion on what end of life, aging in place, independent-yet-supported care options should look like? All while being affordably priced? (Yes, that was sarcasm. in America, I get the impression that we’d love to dollar store the care costs for our infirm and aging population).