Caveats for Caregivers (6)

This is my sixth essay on caregiving, first published on another website on September 21, 2012.

It had almost become routine.

My mother had frequent urinary tract infections, and they often resulted in her becoming even weaker than she already was, and more confused than usual.  So, when the nursing home where my mother resided called me early in the morning to tell me that my mother had become unresponsive, and that they were sending her to the hospital, I was not surprised.  I went straight to the emergency room, arriving there just before the ambulance did.

But then something happened that was not routine.

Shortly after my mother was brought into the emergency room, the nurse asked me if I had spoken with a social worker.  “Well, not today,” I replied. In all the previous times that I had been to the hospital with my mother, the social worker was someone who showed up the next day to discuss whether my mother lived alone, and what kind of care she would need, or whether I needed help selecting a skilled nursing facility.  I had never talked to one in the emergency room, especially before a doctor had even seen my mother. But five minutes later, a social worker showed up, and the first question out of her mouth was, “Have you considered palliative care?”  As the name would indicate, palliative care focuses on making the patient comfortable rather than on treating the illness.  It is like hospice, only you don’t have be diagnosed with a terminal disease with only six months to live to qualify for it.

Clearly, they had come to the conclusion that my mother’s health had declined to the point that ordinary treatment was no longer appropriate. They didn’t have to convince me.  I had come to the conclusion that hospice was the best thing for my mother almost a year earlier. However, my mother was not ready, psychologically speaking.  In her mind, hospice was a halfway house to euthanasia, and I was of the same opinion.  It is for people who want to die as quickly and as painlessly as possible, and if that is not your attitude, you are not ready for hospice.  Every social worker will deny this. “People in hospice often live for years,” they will tell me.  “It’s just a different approach to end of life care.”  But I knew better, and so did my mother.

She would sometimes tell me that she hated her life, that she wanted to commit suicide, but that she couldn’t figure out how to do it.  “Well, Mom,” I would say, “if you are really tired of this, I can put you in hospice.”  She would become silent, and then, after a couple of minutes, she would begin talking about something else.  Nevertheless, such thoughts persisted.  I usually was the one who gave my mother her medicine in the morning, explaining each pill to her as she took them.  “And this one is your stool softener,” I would say, while holding it in my hand. “Suicide pill?” she would ask.  “No, Mom.  Stool softener.”  This happened on at least three different occasions. So, clearly it was on her mind.  And yet, not surprisingly, she could not quite bring herself to go into hospice.  Once, when she was really sick, she just barely managed to get the words out, “I can’t take this anymore.”  “Do you want me to put you in hospice?” I asked. Without hesitation, she said, “No.”

But palliative care was different.  At least, it was a different term, one without the connotations of a death sentence.  Of course, my mother already knew that she was dying. But it is one thing to accept the fact that you are going to die, and it is quite another to give up.  Perhaps, with this concept of palliative care, I could get for my mother all the benefits of hospice without the disturbing connotations.  As it turned out, however, my mother declined to the point that I realized she probably would no longer know the difference.  So, notwithstanding my mother’s wishes, I decided hospice would be best for her.  I had already signed a do-not-resuscitate order on a previous occasion, but now I signed a do-not-hospitalize order as well.  I felt as though I was signing a death warrant.

Is there a term for the opposite of “control freak”?  Some would suggest “easy going” or “laid back,” but that is not what I have in mind.  It is not merely that “control freak” is a substantive, whereas “laid back” and “easy going” are modifiers that makes them inadequate. It is the fact that these latter terms fail to capture that strong aversion I have always had to deciding what is best for others or telling them what to do.  I once refused a promotion to manager for that reason.  Instead, I recommended a coworker who was younger than me by a generation.  He became manager, along with a raise, and I took my orders from him, which suited me just fine.  I never wanted to be responsible for anything but my own actions or for anyone but myself. Well, whatever the term for it might be, for the past year, I had been forced to make decisions for my mother, in some cases, contrary to her wishes.  For starters, I had put her in a nursing home.  On many occasions, at the end of a visit, she would ask me, “Can’t I go home with you?”  Saying “No” was a soul-crushing experience.  And now I had made a life and death decision for her.

Two weeks later, she became unresponsive again.  But this time she did not go to the hospital. For a day and a half, she received nothing but morphine. And then she died.  If I had let her go to the hospital, she would have received fluids intravenously. They could have intubated her to help her breathe.  And I could have had a feeding tube installed.  She might have recovered again, and then returned to the nursing home, after which she might have lived several more weeks, months, or even years.  But she received none of those things, because I denied them to her.

Now I have dreams that I forgot about my mother and left her somewhere—how frantic I am that she is lost, and how relieved I am when she manages to find her way back to me.

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