A difficult time last night. My dear aunt’s dear friends U. and M. came here for dinner, and M. let me have it. She was on the front lines at the end of Do’s life, visiting her often at the care home, and afterward, sending long, frantic messages to my brother and me about Do’s terrible pain. My brother felt we were doing all we could, M. was very clear we were not doing enough, and I was in Toronto, trying to sort out the situation. Was she in the right place and receiving the right medication? My brother said yes. M. said no.
At the end, urged on by M.’s distressed emails, I started frantically phoning about palliative care, making lists of places she could go; I called an advocacy group for the elderly to find out how to get Do transferred and even got in touch with a friend who knows the former Ontario Minister of Health, to ask him what we should do.
What I did not do was get on an airplane. What I really did not want to do was, once more, get on an airplane or a train to Ottawa and rent a car, or rent a car in Toronto, and drive to a care facility. I did that ten times just in the year my mother was dying, not to mention the years before when she was in and out of hospital; I had done it three times this past summer for my aunt, and I did not want to do it again. I had my next trip to Ottawa booked – the trip I’m taking now, in early November.
As I pointed out to M. last night, we hired extra PSW’s for Do, got a special hospital bed, a special nurse for her bedsore, and my brother was convinced the care at the home was very good. The head there, whom I spoke with several times, felt Do was receiving the right treatment. Though of course she’d say that.
We even wondered if Do only showed her pain to U. and M., because when he was there, my brother saw a different picture. We knew that Do hated to be a bother to her loved ones. But perhaps denial played a part here. But also, M. has a tendency to dramatize.
M. told me last night that we let Do down, leaving her to languish in terrible pain until the last day of her life; at the end, her medication worked or something changed, and she died in peace with Mike on one side and M. on the other. M. felt I should have come once more, to see if I could make things better for Do. She’s right; in an ideal world, I would have come. But the world is not ideal, and my life is very busy, and I felt, somewhere, that I had done and was doing what I could.
M. begs to differ. Though I did not appreciate hearing what she had to say, I understand firmly that she spoke because she cared deeply about Do.
What we finally decided is that part of the fault lies with Do’s caseworker, who should have referred her earlier to palliative care. But then, I pointed out that not that long before Do died, she seemed to be getting better. And the caseworker probably has an enormous caseload.
M. speaks about a woman moaning in pain, being forcefully encouraged by staff to eat despite the fact that she was begging to die. My brother did not see the same woman. And I did not get on an airplane to see for myself.
There should be a guide for people in our situation: Toward The End: What To Do When Your Loved One is Dying. We had no idea how to get her into a specialized palliative care facility, and the home where she lived told us they provided perfectly good palliative care – is that true? How could we tell? Mike told me he thought the doctor there was terrific. M. told me he came once a week and probably didn’t get to see Do on every visit because he was so busy.
People only have one death, and loved ones should make sure they do what they can. And yet hindsight does not help. We know timing and circumstances after the fact. We don’t at the time.
We do what we can, and sometimes, that’s not enough. That’s something I’ll have to live with. However, as I clear out this apartment, I am finding stacks of the letters and cards I wrote to Do through the years, envelopes full of photos I sent, framed photos and the kids’ drawings that my daughter sent with her own cards and letters. Copies of all my books, including one inscribed, “To the best aunt in the world.” I called her often, even when I was in Europe, visited her regularly and brought gifts and took her to dinner and to the movies and for drives. We laughed and reminisced together. I did what I could.
At the end, I could have done one last thing.
P.S. Ten minutes after posting, read this in the Globe. I guess in my confusion and regret, I’m not alone.