Sleeping today. Sleeping a lot.
It is a waste of a rare day; the temperature is over 60°F and the last of the snow piles are finally yielding to the thaw. I woke at 7:30, then again at 9:00, and once more at 12:30. I am so stiff that I doubt I can stand, even with the assistance of a power chair designed to hoist me skyward.
The Mechanics of The Long Sleep
The chemical explanation is obvious, though incomplete. I am on a regimen of powerful narcotics: a pill restricted to one every four hours actually in a special timer container which only dispenses one at set times, despite the fact I had been taking that pill for years just with a bottle. I also have several topical patches for arthritis in two locations, and a specific sedative for peripheral neuropathy—the fire in my foot nerves.
Lastly, there is the fentanyl patch. The nurses retrieve them from a locked box we keep in the kitchen. They all have a ribbon around their necks with the keys to the box and the dispensing machine. The nurse watches with clinical precision as I remove the old one from near my shoulder, under my shirt before they hand me the new one to apply. They insist it is necessary; they keep upping the dosage, though I remain skeptical of its efficacy.
I have lived with high-dose narcotics for two decades. What I take daily would send most people to the Emergency Room or into a permanent slumber, but my tolerance is so high that the drugs barely seem to register. They aren’t the reason I can’t get up today.
The hardware works. I can push the button on the recliner. But the transition to the power wheelchair requires my right hand to bear weight. My hand functions, but it cannot support me today; the pain of weight-bearing is absolute. Typing is manageable, but leverage with that hand is out of the question. The pain is severe, immediate, and it lasts for several minutes.
I dismissed my helper today. She could physically lift me, but the mechanical strain would hurt more than the staying put. I am past the stage of being upset by the indignity of needing a young woman to help me move or bathe. It is simply the physics of aging—gravity and friction eventually win.
The world is narrowing, too. I lost my left eye two years ago; I simply woke up to a blank space in the center of my vision. Old people get this, despite my refusal to accept I fit the demographic. The doctors call it Macular Degeneration—the failure of the very part of the eye that allows me to read these words.
That isn’t what happened to me but I take AREDS 2 supplements now, which are supposed to help slow macular degeneration which I could also develop. It wouldn’t have helped if I took them before because what I had was a detached macula – that part of the retina actually separated from the back of the eye.
I have two friends whose wives have that too. There is a treatment that sometimes works. I drive ninety miles to Pittsburgh since no local doctor will do it, lie on my back while the doctor injects an air bubble into that eye. The bubble is supposed to push the macula back in place.
Now comes the fun part. I have to remain flat on my back, not for an hour, not even a day, SEVERAL days. Yea, thanks doctor. Someone could have mentioned that, perhaps the doctor in Punxy who got me the specialist in Pittsburgh. No, I had to pay a specialist hours away to tell me the treatment would be literally impossible to do.
Ever tried to lie flat on your back continually, every second, for several days? People in a coma do it, but no one else can. I will no longer go to the doctor in Punxy who failed to tell me that, I really should have used Dr. Google.
Rural Health and The Business of Medicine
Dr. Amber is my primary now — a bubbly young Nurse Practitioner. She is as high as a nurse can get, almost a doctor and carries the authority to prescribe even the restricted narcotics, but she is a nurse, not a physician.
Being on palliative care anyway she was a fine choice for me. But that is the reality of rural health. My doctor of twenty years, Dr. Elder, was a board certified elder care specialist. He suddenly retired.
He was an expert in internal medicine and geriatrics, but his office was a graveyard of paperwork—piles of administrative mandates he was forced to sign. Little of it was the actual medical journals he needed to keep up with. I know what they look like; I still subscribe to The Lancet and the New England Journal of Medicine.
I think he just got disgusted with not being able to practice medicine since he was mostly practicing to be a clerk.
Dr. Elder was younger than me by a decade, but the medical group he joined twenty years ago eventually broke him. He stayed in this rural area after a scholarship program, a man qualified to make a fortune in any city, only to be crushed by the “Business of Medicine.”
Our local medical center is a monument to this dysfunction. They built a three-story facility: a pharmacy on the first floor, a phlebotomist in one room, and the practice on the second. The third floor sits entirely empty. Most of the first floor is a ghost town, too. The wonderful small pharmacy that once lived there was squeezed out by Rite Aid.
But the point is, that giant building and a doctor’s office with dozens of empty chairs now has only one actual doctor, two or three nurse practitioners who are nearly doctors, several nurses, and about a dozen clerks.
They can’t get another doctor to move to this practice. That is more startling when you learn this medical group has nearly twenty other locations staffed with doctors and nurses.
No doctor is willing to move to this beautiful, low crime community. We have a nice location, housing is relatively inexpensive, lots of activities, a theater, several larger towns within a half hour, a decent hospital rapidly expanding but already well equipped, yet they can’t get another doctor to an already open and working clinic.
Part of this is because Congress limits the number of new doctors by underfunding training, forcing many women to become nurse practitioners instead of full doctors. That was a piece I wrote recently on the ‘Business of Medicine’ and how Congress limits the number of new doctors. Will the practice close? There is only one doctor and empty waiting room most of the time. I have seen a maximum of twenty people and many of them were just helping others.
Pharmacy Delays and Small-town Realities
But Rite Aid was a disaster. I once protested their inability to fill my diabetes medication three weeks after I ordered it.
I refused to move my Mercedes from the drive-up window until they called the police. They had it in the store, they had the prescription, the insurance covered it, but the pharmacist didn’t want to give it to me until he talked with my nurse practitioner who prescribed it.
Rite Aid never answered their phone so she couldn’t call, she was with patients so she couldn’t answer the Rite Aid pharmacist’s call, so he refused my diabetes medicine which was already three weeks late because they couldn’t afford to stock it.
This is a small town; I was friends with the Mayor who hired the officer who arrived. Seeing a local journalist in a high-end car caused quite a stir. I tried to get the officer to arrest me—I wanted the headline—but the manager wouldn’t officially trespass me, which is the legal threshold for arrest here in the Commonwealth.
I didn’t tell the officer I knew his boss until we were finished and he wouldn’t even issue a citation, so I didn’t use my connection to get special treatment, he was just a very nice officer as every Punxsutawney policeman I have met was, competent since they do get occasional real crimes, but normally friendly and helpful. That was when he told me he was the last hire before the mayor died. We both miss him.
Rite Aid closed two months later. It left Walmart as the only pharmacy within twenty miles. They were overwhelmed at first, but to their credit, they’ve straightened it out. They deliver for free now, usually within hours.
A drive-thru is a critical piece of infrastructure for the elderly. Many of my medications are restricted; they can’t be delivered and must be picked up by an authorized adult. My registered nurses handle that now, as my helper isn’t authorized for the “heavy” stuff.
It used to take up to a half hour standing in line at the Rite Aid if you couldn’t go to the drive-thru for some reason, like riding your scooter to the store from the elder housing five blocks away, or, worse yet, walking there with a cane and having no place to sit down while waiting.
Watching The Thaw While He Still Can
Enough for today. The ice is melting and the birds are active. I hope to get outside this afternoon to feel that 60-degree air. I want to watch the thaw while I still have the right eye to see it.
Part of John McCormick’s “Last Deadline” series — reflections from a journalist writing through his final chapter.
Explore more from John McCormick and his books.
Series so far:
- Hospice, The Last DEADLINE of a Correspondent
- A Correspondent’s Notes: Day Two in Hospice
- Hospice Notes Day 3–4: Pain, Swelling, and the Relief of Oxygen
- Hospice Notes, Week Two: Pain, Cookies, and Letting Go of a Library
- Another Day in Hospice — A Good One This Time
- Hospice Notes: Good Days, Bad Days, and Broken Pipes
- The Mechanic, The Sailor, The Journalist, and The New Definition of Self-Reliance
- Dispatch From the Frontier: The Mechanics of the Long Sleep
- Good Days, Bad Days, and the “Hospice Paradox”
