After the Pain, Relief – Another Day in Hospice
After a truly bad day followed by a merely unpleasant day, I am happy to write about a good day.
Pretty happy to HAVE a good day to write about too.
My appetite has returned. On that first bad day—which I mentioned in my last message from hospice—I ate only two small candy bars. The following day was slightly better, with some cinnamon toast and buttered noodles. Today, however, was good.
I woke up briefly at 7:30 a.m. to take a couple of pills, then woke again at 9:30 a.m. and was almost entirely free of pain. In fact, I’m probably experiencing less pain than I used to feel the morning after a full day of training and an hour-long evening run. In other words, it’s the kind of discomfort that calls for an aspirin or two.
Nurse and Helper Visits
I had two visits today.
First, the nurse arrived to take my vitals—she comes at least once a week for the usual blood pressure, pulse, and blood oxygen readings. While my blood pressure was fine (I take three daily medications for it), the blood oxygen reading was concerning.
The pulse oximeter—that little gadget you’ve likely seen at any doctor’s office—gave quite different readings from my left and right hand fingers.
Even worse when left on my finger for a minute, the number kept falling from 98 down to 91, which, as anyone with medical knowledge knows, is not good.
I did use my oxygen concentrator the previous night, which may or may not have bearing on my lack of pain this morning—it’s too early to tell. But we didn’t use the oxygen today because, despite the falling numbers, I was not short of breath.
About an hour after the nurse left, my dedicated helper arrived. The other day she had waited outside the bathroom while I was able to shower on my own, but on days when I don’t shower, she helps me wash my legs, which I can’t easily reach.
My leg skin is very delicate because they are badly swollen from retained water. I take water pills and wear compression socks for this—which many people my age are familiar with—and while my legs are better, they are still not good.
Part of that is simply because I can’t walk so I get little exercise.
So today I visited with both the nurse and my helper, who comes three times a week, as part of their jobs. Beyond the physical care, they are also gauging whether I am depressed yet. If you are in hospice, you know what is coming, and many people are understandably depressed.
Perhaps surprisingly relatives and friends are often more depressed than is the person in hospice. In my case I requested home hospice care entirely on my own, no one forced it on me which sometimes happens and causes no end of bad feelings.
Understanding Home Hospice
But perhaps a reminder is needed here since not everyone reading this has read all the previous notes. Home hospice is nothing like a nursing home or whatever it is called in your area.
Home hospice care is done in the person’s home where we are surrounded by our own belongings and not subjected to unpleasant roommates not of our choice.
Home hospice is simply a care regime with the aim of keeping the patient as comfortable as possible whether this means help preparing food and eating (not my needs), washing up (also mostly not my need), and pain medication along with oxygen as needed.
Oxygen and Sleep
Some supplemental oxygen helps me sleep since I occasionally wake in the night gasping for breath. This doesn’t happen when I am on oxygen even at a low level 1-2 L. Supplemental oxygen seems to help with pain management but this is, in recent medical practice, considered a bad idea.
Until recently oxygen supplementation has been considered a minor pain management benefit and some still feel it has a benefit.
All I know is that when using low level oxygen supplementation at night I wake up after longer sleep and usually feeling relatively pain free. I know what to watch for as far as bad reactions and have none.
As for food, today I ate a good, big meal this morning and may eat something for dinner later although often one meal a day is all I can eat or appear to need since my weight is holding steady.
So far, in mid-afternoon, this has been a very good day, measured by the fact that I have not been in pain most of the time. I wasn’t, so it’s a good day so far.
Part of John McCormick’s “Last Deadline” series — reflections from a journalist writing through his final chapter.
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
Editor’s Note: John wrote all of this, with some AI assistance in editing/spelling and pictures.
