Not Knowing What to Expect

After experiencing a strange blend of consciousness and dreams and, I suspect, side-effects from the Shingrix injection night before last, I feel reasonably stable this morning. My back still hurts and a new sensation—that I’ve been kicked in the kidneys—is bothersome, but over all, I think I am as “well” as I deserve.

The result of the bizarre incident is that I did not get to the inpatient hospice until just before noon. My wife was asleep and responded only briefly to my gentle efforts to wake her; she accepted a couple of sips of water before falling asleep again. The nurse told me efforts to give her breakfast were futile; she was awake enough to refuse the meal. When a meal was brought in after I arrived, my wife slept through my efforts to cajole her into eating; she remained asleep all afternoon.  The nurse suggested I eat the meal if my wife would not; I finally had the lunch of green beans, penne pasta with meat sauce, sliced canned peaches, and iced tea. I left the roll and the milk.

It is hard to sit next to my wife, watching what appears to me to be her restless sleep, while a nasal canula delivers oxygen to help her breathe more comfortably. Periodically, a nurse will come in to ask how she is doing. She does not respond, but the nurse senses by watching her grimace that she is in some degree of pain. So, she takes my wife’s hand and asks her to squeeze it if she wants the nurse to give her pain medication; I watch my wife’s hand squeeze the nurse’s. The nurse leaves and comes back a few minutes later with a syringe containing a small dose of morphine. She delivers the morphine and leaves. I have mixed feelings: does the morphine rob my wife of the ability to speak to me, or on the other hand is it enough to eliminate the pain? I decide she should be given as much as necessary to be sure to eliminate the pain.

From time to time, as I gaze at my wife and see her struggle, my eyes fill with tears. I feel guilty that I do not know whether they are tears for me or tears for my wife.

The social worker came in during the afternoon to ask if I had thought about “arrangements.” I deflected. She then said she had spoken to the doctor about whether my wife is likely to continue to qualify for inpatient hospice; unless there are requirements for her comfort that can be delivered only in an inpatient setting, she would not qualify. I brought up the morphine. There are under-the-tongue medications that dissolve and accomplish what morphine does, though not as thoroughly, she replied. The decision would not be instant; I would have a couple of days to arrange things. Later, I called the company that delivered the hospital bed and Hoyer lift. I need to be at the house on Friday to let them in to take the equipment. Although I may have to do it sooner. The hospice organization will provide equipment if she is sent home.

Periodically during the afternoon, I checked the weather forecast. Talk of sleet, snow, and freezing rain beginning early in the evening convinced me I should leave before darkness fell, so I left around 4:45. The drive home was uneventful. I have not checked to see whether the forecasts were correct. I may stay the night at the hospital tonight and/or tomorrow. It depends.


During my morning perusal of news websites, a sentence from the AP website struck me: “For the first time in history, the U.S. government has carried out more executions in a year than all states that still conduct executions…” The article, based on a report from the Death Penalty Information Center, notes that 55% of respondents to a 2020 Gallup death penalty poll support the death penalty and 43% oppose it. But Americans, the report says, “had “nuanced views” and that even many who say they support the death penalty in theory don’t like it in practice.” Personally, I oppose the death penalty, though I think I can understand the emotional and intellectual arguments of those who support it. In my view, our justice system has too many flaws that can allow innocent people to be erroneously convicted of heinous crimes and sentenced to die; those errors, once carried out, cannot be corrected. And I understand what I call the “revenge reaction” to horrible crimes in which people are brutally murdered, tortured, etc. But, still, our own Declaration of Independence clearly states:

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

I wonder whether the Federal government, under Trump and his henchmen, have altered the course of the arguments? I suppose we will see what we will see in the years ahead.


I think I am withdrawing from everyone and everything. It’s a selfish reaction to emotional turmoil. For some reason, though, I think the withdrawal may outlast the turmoil; it would be different, I think, if I did not feel most of my interactions are fraught with uncomfortable formality. Formality inhibits a person’s ability to be open and unencumbered by social expectations. I think of the matter in terms like this: If I could choose between living as a member of a royal family in a spectacular castle or in a one-bedroom apartment in which I was utterly free of social expectations, which would I choose? I think I’d choose the latter. Keeping up appearances and being unable to exhibit the “casual me” would be nightmarish.


Time for a shower and shave. If I had a hot lather machine, the shave would be more pleasant. But a hot lather machine is a luxury I do not want or need.

About John Swinburn

"Love not what you are but what you may become."― Miguel de Cervantes
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2 Responses to Not Knowing What to Expect

  1. Bev says:

    I understand some of the feelings you are describing. This is all new territory. When I was in a similar place, I remember a feeling of withdrawing and isolation. It’s all very difficult – adjusting to a situation where the ground is shifting with each passing day. Take care. b

  2. Pat Newcomb says:

    John – we are standing with you in this difficult time. Let Hospice also help you and support you during this time. Keep writing if you can.

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