Daily Care and Quiet Conversations
The young lady who comes in three days a week to help me with home hospice care has just left. We usually chat for a bit after the physical tasks are done, which I suspect is part of her job—monitoring my mood as much as my physical status. She lives just a few miles away so I am always her last visit of the day, which is usually around noon.
She travels as far as fifty miles for other clients. In contrast, the nurse only comes once a week unless I call, performing the standard checks: blood pressure, temperature, heart, and lung clarity. This establishes the dual nature of my care: constant personal assistance balanced with infrequent medical oversight.
(NEW note, the nurse did make a special visit early this evening to bring a prescription. Hospice orders some medicine Walmart can’t carry and the pharmacy hospice uses ONLY fills hospice prescriptions. I still get others from my regular doctor through Walmart.)
Young Workers Who Still Show Up
Looking at these two young ladies, the nurse is a few years older than my helper, and the young man who worked for me last summer around the property all three must be exceptional from all I read and hear about how hard it is to get many GenZ workers to fit into a company and even show up on time
From personal experience the family friend who comes when I need him can’t even recommend any of his friends to work for me which means he wouldn’t trust any of them to be reliable for me and most of them are trade school graduates.
The Paradox of Hospice Care
I had a bit of trouble writing this piece mostly last week because my hand kept cramping up. It’s been part of a series of really bad days, coming right after a nearly five-day stretch when nothing was wrong except a lack of appetite.
This is the paradox of hospice.
Since entering care, I’ve actually had a number of good days, better than I’d experienced for more than a year previously. In fact, the improvement had me thinking I might have enrolled too early, despite two very close together ER visits and several doctors recommending it.
But then the bad days hit, culminating in two days where I was too sick to eat and threw up immediately after the first bite when I finally felt slightly better.
Managing Symptoms, Not Causes
Hospice workers aim to keep patients comfortable—that is their primary goal for the patient, although they also provide services for the family.
Hospice ONLY treats symptoms, not the underlying conditions. I had plenty of medication, but it often wasn’t strong enough. Not my doctor’s fault, the government now greatly limits the amount of medication a regular doctor can prescribe. This is because of the abuse of narcotics a decade ago which means people who are really sick and not just having back “problems” can’t get real relief.
BTW, while I can only describe some of my problems, several of them show up on any MRI so no doctor has ever questioned whether I was one of the far too many fakers.
Even in hospice I could get permission to take a higher dose of some meds, but I prefer to avoid the “fuzzy feel” that comes from strong drugs and the many complications caused by some of the medicines I take.
I have 9 prescriptions. My partner, who is actually a few years older than me and not a baby boomer, still has mostly brown hair and never took medicine regularly until a few years ago, about when she reached my current age.
Finding Relief in Small Victories
At the recommendation of the hospice nurse I recently added lidocaine patches for my shoulder, which has arthritis that sometimes flares up for hours or days. Ironically, since getting those patches, the shoulder hasn’t hurt enough to try one, demonstrating how unpredictable the pain can be. For ongoing medication at low doses I already have another daily patch I change every three days.
The biggest victory recently has been the management of nausea. I now have ondansetron, tiny, flavorful pills that dissolve instantly in your mouth. Since I seldom have any warning before losing a meal, I often take a tablet before eating, even if I feel fine. It works very well.
I had once asked a pharmacist what to use, and he recommended warm, stale Coke—which does help—but he never mentioned this simple pill. One of the hospice team members told me they use them almost every day. The only minor trouble is that the tablets are so delicate they are individually sealed in difficult packaging, which can be frustrating if I need one in a hurry.
A Public Topic, A Personal View
Coincidentally, soon after I began writing these notes and sending them out, the local paper ran a long piece on hospice care, written by a local company (though not the one I use). It was a timely reminder that while my experience is intensely personal, the subject is one of vital public interest.
Of course that was essentially an ad, not something from a patient at least I presume so since there was no byline. Anything I write has my byline, all 18,000+ of them.
Follow the whole hospice care series:
- 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
- Hospice Care: The Rhythm of Comfort and the Paradox of Good Days
