How Our Caregiving Ended

The British tend to use the term “carer” for the people who help other persons with needs.  It seems to emphasize its root word, care, with implications for family members, volunteer helpers and professionals who fill that role.  The American term tends to be “caregiver;” its usage has become more common.

Even when I worked in healthcare, I had never used either of those terms.  But over the last fifteen years, I evolved an intimacy with that jargon, all about the pervasive practical considerations and necessary actions that help a needing person to live, even through that person’s end, and a bit afterward.

When my wife died at home, it wasn’t really a surprise.  There were changes in the last weeks that we as family, and the daytime caregivers, had noticed.  She was eating less than usual, even when sipping at her favorite chocolate nutrition.  She was losing weight, and her skin, which we had kept clear of pressure sores for so long, developed blebs in unusual places. 

Perhaps she was less alert, or more withdrawn. Over the previous few weeks, we had notified her primary care physician’s office of the need for a home hospice referral, but because of some snafu, the correct wording wasn’t used, and the paperwork stalled.  We even called a community home hospice agency, but they didn’t respond in time either.

Years before, we had already obtained a POLST (Portable Order for Life-Sustaining Treatment, our state’s “green form”), signed by a doctor, that made clear my physician wife’s choices in advanced directives: no CPR, tube feedings or IV treatments. By then, she could no longer talk.

During my career, I had attended a number of hospital deaths, as oncologists do.  And in my practice, I made my own home hospice visits when I could.  My professional role was limited, but I understood the general outline for families, if not the details.  And I had learned to temper my own expectations. 

That Monday morning was a sunny one for December.  After the caregivers arrived, I  told them that my wife might have a change in her breathing patterns, that she might have trouble swallowing, or she might even develop choking.  They got her up uneventfully, and moved her to see the outdoor view through our living room window.  Sometime later, a caregiver came to me, saying that she seemed to pause after breathing, one of the patterns I had described.

She was peaceful when I arrived.  As one caregiver remembered it, her eyes were open but distant; earlier that morning her eyes seemed to show some sadness in response to a soothing phrase.  She was calm, then had one last quiet sigh; it was soundless, not agonal or moaning, there was no inhaling gasp, but she had no more.  

We moved her immediately back to the bedroom so she could lie in her bed. I leaned down and kissed her, and we covered her normally with a blanket. I know that I called our adult daughters, each at work, but don’t remember the conversations.

Since we didn’t have an active home hospice referral, I knew that firefighters could pronounce her death; my own license had lapsed in retirement. I called 911, making sure they knew it wasn’t an emergency, but that we needed their assistance.  The firefighters arrived quietly and were gentlemanly; they listened, reviewed the POLST, examined the body and did their documentation.  However, the bureaucracy of a home death in our city was more complicated.

Even with the POLST, the firefighters were obligated to call in the police.  They too arrived quietly, were also gentlemanly and sympathetic, but they were required to photograph her and her prescribed medication, and they interviewed the caregivers privately about the last time, if any, they had administered medication, and other matters. 

The firefighters left, but the police stayed quite awhile until they were cleared by the Medical Examiner’s office. Evidently that office had to make a determination about forensic issues, and their own role.  At the end of their day, they released the case without further examination, and delivered a coded number that would allow her legal transportation from the home.

But our situation was further complicated: we had arranged for a research brain autopsy to be done at the University Alzheimer Disease Research Center.  The autopsy had a practical biological time limit, but the special transfer was delayed until well after midnight.  The procedure was done in time, even though there was a further bother in transporting the body to the funeral home.

Our daughters were magnificent in dealing with matters I couldn’t fathom, from dealing with the funeral home and deciding on religious details and service particulars, to notifying friends and family of our changes, while considering accommodations and travel issues. Having clergy available was wonderful. Friends helped.

But husbands are supposed to die first, right?  I had my own serious medical diagnosis and limited prognosis delivered 18 months beforehand. I deliberately re-drafted my Last Will then, updating the provisions for my wife’s care after my death.  I also took care of purchasing a cemetery plot, close to where her own mother is buried. I hadn’t thought it would be timely.

After the funeral, further events were not so much about caregiving, as much as spousal duty.  The caregivers were told to keep coming to the house, because I required their help in unwinding the years of needs and caring that they knew so well.  We had a lot of supplies to pack up, and a lot to give away, over the ensuing days.

There were still other tasks and decisions that I had to do myself.  I won’t detail the frustrations for a surviving spouse and Executor, from death certificate errors to dealing with governmental, medical and financial bureaucracies.  Somehow this “Care Giving Old Guy” remained cognitively intact (or faked it well enough) to be fairly civil in dealing with those issues.

So Irene died in our own home, in her own chair and bed, peacefully, spending some time facing our view window on a sunny day.

The house was surprisingly busy for a while; I even joked that the number of women was close to bursting point.  But in the evenings, in the winter darkness, it was quieter here than ever.  A chronic insomniac doesn’t sleep any better in the stillness.