Not Every Day Is a Crisis
Not every day is a bad day or a new medication day.
This was one of those days.
I was able to sleep fairly well after a day with a lot of muscle and joint pain.
Pain and Mobility Challenges
It was bad enough that even with painkillers at a safe maximum I was unable to have a shower even with my helper’s assistance.
People may find that hard to understand, after all she is here to help me in and out of the shower and there is a shower bench but you are forgetting that it still requires a considerable amount of effort on my part and when just moving causes significant pain just try to imagine how painful it is to move around when even sitting up in my recliner is extremely painful.
Swelling and Water Pills
My lower legs are badly swollen and I have been using the compression socks that reach the bottom of my knees for almost a year.
This has been so bad that a week ago my legs hurt quite a bit just because of this.
I am now on what are referred to as water pills, that is, something like lasix which is intended to get rid of excess bodily water.
I won’t go into how that works but you can guess and that causes me to get up a lot more often for a trip to the “little boy’s room.” In my case taking pills to reduce water content in my body is risky because I had recently landed in the ER and overnight in the hospital because of dehydration. In other words I have to carefully balance intake and outflow.
Pain and Appetite
One thing you don’t, or probably can’t understand if you don’t experience it personally is that constant and sometimes serious pain removes any desire to eat or drink and on many days I need to force myself.
It is a regular part of my vitals that in addition to pulse and blood pressure my nurse routinely asks what if anything I have eaten the previous day.
Oxygen and Sleep
I think I mentioned getting an oxygen concentrator the other day.
I may not have actually been short of oxygen but it felt that way and was waking me up.
While I write this I have to share that the other day I actually had an oxygen reading, you know the blood oxygen measurement taken with those finger gadgets, was actually 91 which is just on the edge of concerning.
I wasn’t on oxygen and didn’t feel short of breath but that was the measurement so apparently I have times when I am actually short changed on the oxygen side. That may explain why occasionally I have trouble sleeping through the night.
My doctor would not prescribe oxygen to me before because there was no specific need but in hospice the concern is making the patient comfortable and that doesn’t just mean increased doses of painkillers, anything which does not actually cause significant harm or risk is considered acceptable.
I was waking up short of breath at night and having oxygen would probably help me stay asleep so I have a concentrator and it has made a big difference.
There is also a large high pressure oxygen bottle in case of power failure but it is unlikely I will need to connect it.
Oxygen Concentrator Details
This uses regular wall power and there are small battery powered portable units you will sometimes see people wearing while walking around stores.
Since we alternate between Walmart and Amazon canned, boxed and fresh foods I don’t have a portable unit since I don’t leave the house and during the day I don’t need it around the house since it is mostly so I can sleep through the night.
Hospice Notes – Closing Note
I am writing these hospice notes to keep my mind and body working, and to help others that might need them.
Well, that is day three, nothing exciting which is a good thing.
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”
- Good Days, Bad Days, and the “Hospice Paradox”
