Yesterday, I entered hospice.
There, I got it through my fingers and to the screen, and I know that this time I will finish and post it on Medium. I started three times yesterday and this morning.
One turned into a rant about the twenty year war and how it looks like we got nothing from it and we are leaving Afghanistan worse off. Excepting the crooks. When you move money in cash and in amounts that require pallets and a forklift, there is bound to be some shrinkage.
One came out with a discourse on neos: neocons, neoliberals, and Neo from The Matrix.
The one that came closest was titled “Dead Man Voting” and it was in essence an apology for remaining engaged in issues that will not affect me. In that one, I buried the lede — that being hospice — in the third graf.
“Who cares,” I excused myself, “if Steve Russell is in hospice? At any given time, thousands of people are.” It struck me then that the people who know me care and lots of people are curious about hospice. That’s more audience than I usually start with, and I’ll be lucky to have any audience after that last historical rant.
You wonder about the stoic Indian, how that stereotype has enough truth to persist in the face of crimes that make Donald Trump look like a choir boy? Occasionally — not often, thank goodness — one of us will lose it and spill out anger enough to wilt the plants. I guess it was my turn to lose it and I am sorry.
Now, back to the hospice I finally got around to mentioning on the fourth try and then with difficulty. Those of you who read my memoir know that I am not looking for sympathy but I am not accustomed to tippy-toeing around feelings, mine or yours.
Forget about sympathy. We all must walk on, and I am doing so in a manner that should save the sympathy for others without my resources. This is home hospice, so that means in my final decline I will be surrounded by my wife and kids and grandkids, my dogs, my artwork, my books…. When I compare that to the four times I’ve been hospitalized in the last year, I feel very lucky.
My distaste for being in the hospital is no reflection on the institution or the people who work there. In my column on getting mistakenly tucked into an isolation ward because my symptoms mimicked Covid-19, I referred to my moonsuited helpers as “paladins.”
I realized only after the piece published that, for my generation, I had awakened memories of a gunfighter whose gun was for hire only to those he considered to be in the right. To those lucky few, he would hand his business card: a black knight chess piece with the words, “HAVE GUN WILL TRAVEL/Wire Paladin — San Francisco.”
Wikipedia offers this description of paladins as “Holy Warriors”:
The Warrior aspect is typically patterned after the fictionalized chivalric image of a knight-errant in shining armor from the High Middle Ages or Renaissance period.
The religious aspect harkens back to the historical Paladins’ purported role as the bodyguards or right-hand men of Charlemagne, an 8th-century Frankish king and self-appointed Protector of Christianity; or alternatively to the religious backgrounds of the Crusaders, especially chivalric orders such as the Knights Templar, Knights Hospitallers or Teutonic Knights.
I am no Christian, but during my time serving the United Farm Workers, I saw women and men taking substantial risks while unarmed and surrounded by armed men, sometimes armed men who had been drinking. They claimed Christianity as their motivation for taking those risks.
Me no Alamo; me no Goliad; courage is courage.
In St. David’s isolation ward, it was not so much the doctors as the R.N.s, the L.V.N.s, the folks who delivered the food trays and who cleaned up the messes the likes of which you only find in a hospital.
Every evening, the TV news would report on hundreds of thousands of deaths from Covid-19. The very next morning, every morning, those people would mask up and go to work taking care of people like me. My infection could have killed me, but it was not Covid-19 — something the hospital workers found out when I did, when the lab reports came back.
Paladins, I say, paladins.
In home hospice, I have my family and the nurses and therapists sent in to treat particular conditions. The treatment by hospice is limited to that necessary to keep me comfortable; curing me is not the objective. I tolerate this because none of the problems I have is likely to be cured.
My hospice diagnosis is congestive heart failure, for which the only cure is a heart transplant. I’m too old and too sick to qualify.
I get a lot of treatment for lymphedema, a parting gift from the cancer I got rid of with surgery. Lymphedema has no cure but it is very unpleasant to be leaving trails of lymphatic fluid and so it is treated to keep the symptoms at bay.
Things felt a little different when hospice services started. I already had a lot of medical paraphernalia: a bi-pap machine to keep me breathing, a power compression garment to squeeze lymphatic fluid from my feet to my heart, a bed that allows me to sleep with my legs elevated, rails around my bathroom facilities, a walk-in bathtub, a walker, an electric scooter. Some of this stuff I bought and some was provided by the VA because I am 60 % disabled.
On the day I started hospice, I got more powerful painkillers to replace the futile ones I had been taking. Hospice ordered a hospital bed for me that will apparently do tricks mine will not. An oxygen set-up was delivered, and I said to the nurse, “I don’t need oxygen.”
“You will,” she said, “before the end.”
I am not offended. I appreciate the matter-of-fact attitude about my death. At my age, I have watched a number of friends and relatives die with hospice care and without. I never had any doubt that I would opt for home hospice care because dying in the hospital holds no attraction for me in spite of the fact that the technology the hospital can bring to bear would extend my life a little.
What got me off the dime was my last visit to the pain clinic. I had to go there every 30 days to get my prescription for opioids. I had to pee in a cup to prove I was taking my prescribed painkillers and nothing else. I had to account for every pill.
Some mornings, I needed two before I could get out of bed. Because I was only prescribed one, I would have to forego one of my pills later in the day so as not to fall behind in the pill count.
I’m told the reason for the rigmarole is so I won’t get addicted to opioids and I won’t divert any of my pills to the black market. Addiction? At my age, who cares? I put my law license on inactive status when my cancer was diagnosed. I don’t drive. I’m going to a pain clinic and they are concerned the painkillers will kill me?
Divert them to the black market? If they would prescribe enough of them to do the job intended, that fear might pass the laugh test.
What finally got me was when Tracy and I had a terrible time getting my scooter hitched to my car, navigating up to the clinic, and then making the inevitable mess when I tried to leave a urine specimen. I told the doctor about the difficulties and that I continued to lose upper body strength and I could see a time in the near future when Tracy and I would simply be unable to get across town. What, then?
After a moment of silence, he replied,
I don’t know.
WTF?, I was thinking. He did not say he would look into it or give me advice where I could find out. His entire answer was, “I don’t know.”
If a doctor who runs a pain clinic does not know how people who are confined to home can get treated for chronic pain, who does?
In my case, I was tipped off by a home health care nurse.
I think Medicare will be covering all or almost all the costs of what must be dying like royalty — for what is it I need that is not being provided? Should I find out this is not as it appears, you, dear readers, will be the first to know.
I expect it will be easier to write about hospice now that I’ve done it once. Should I learn anything new to me that I think might be useful to others, I will publish it under the title “Dead Man Writing 2.”
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Previously Published on Medium
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