Trying to Guess What a Parent Wants Done
BY ARLENE HARDER, MA, MFT
The article discusses the difficulty of guessing what a loved one's wishes might be when those desires have not been articulated.
As I began writing this article, I thought about a phone call I got from the daughter of a client I hadn't seen for many months. By now the mother's breast cancer had metastasized to her bones and the daughter said her mother wanted to see me. However, I would need to make a house call because her mother was now confined to a hospital bed in the family's living room. Glad to make the visit, I was not surprised that our conversation wasn't much different than it had been a few years before. Her visits to my office had always seemed more like visiting with a friend than doing therapy. Back then, when I'd asked if she was getting anything out of therapy, she assured me she looked forward to our visits.
It wasn't that we never talked about serious topics. During the time I was seeing her, her grandchild was dying of leukemia and I had created some imagery scripts she could read to him. But we certainly didn't do any therapy in depth, no deep exploring of the psyche.
So when I saw her in her home, lying on that bed and supported with lots of pillows, we again stuck to "safe" topics, such as how two of her children didn't get along and how her son's business was doing. Planning to come the following week, I wondered when we'd get around to discussing how she felt about dying, which she knew would happen fairly soon. As things turned out, I later wished I had helped her explore her feelings more thoroughly.
You see, a few day later I got a call from the daughter saying her mother had broken yet another bone and was in the hospital. Because she was in great pain, she had been strongly medicated and the family, knowing she was dying, wondered if she's said anything to me about what she would want done. Me! The family wanted to know what she had told me. I then realized the pattern of not talking about difficult subjects was well entrenched in the family.
Here was a woman whom everyone knew was dying, but no one in the family had broached the subject of what her wishes were concerning the end of her life. The best I could do was to tell the daughter that when we'd talked about quality of life — though not in specific terms of how she wanted to be cared for when she was dying — I had gotten the distinct impression that she would not want to have her life prolonged when there was no chance of cure. Apparently that is what the family did, but just think how much easier it would have been on everyone if only they had talked (or if only I had encouraged her to talk with them).
But this family was not at all unusual. According to a study for the National Hospice Foundation in 1999, half of Americans said they wanted their family and friends to carry out their final wishes, yet 75% of them had not taken the time to articulate what those desires were. Further, the study found that parents found it easier to talk to their children about issues like sex than to talk with their own parents about dying with dignity.
What Happened in My Own family.
In 1991 my mother was debating whether she should visit over Christmas with my brother, who lived in Washington state. "I think it would be terrific," I tell her. "Why do you hesitate?"
"Well," she replied, "I could have a heart attack." (At the age of 84 she had congestive heart failure.)
"What would the doctor do about it if it happened in Ohio?," I asked.
"Oh, nothing. There's nothing anyone can do at this point."
"Okay, then, there's no reason why you shouldn't go to Washington. What difference does it make to you if you die there or back home?"
That's how my mother came to visit my brother and then came to California in the middle of January to visit us. We rented a wheelchair to help get her around and she thoroughly enjoyed her visit, liking anything we did. After two weeks I took her to see Palm Springs and the second day there we visited Joshua Tree National Monument, where her keen eyes spotted a fox near a place where we had lunch. That evening when we went to dinner, she had to wear bedroom slippers because her feet were swollen so much due to her poor circulation.
We slept in separate rooms because she was afraid her coughing would keep me up and the next morning I found her on the floor next to her bed. In Palm Springs Desert Hospital they said she had had a seizure and put her on an anti-seizure medication, although, as it turned out, she was one of the few people for whom the drug did not work.
When I look back on the three weeks from her collapse until her death in our home a few feet from where I am writing this, I consider myself privileged to have become her caregiver, together with my sister who flew out from Ohio, and brief visits from my brothers. Yes, there was the difficulty of working with doctors who stepped in as substitutes for her regular doctor a thousand miles away. Yes, there was the day she climbed over the rail of her hospital bed and broke her collarbone. And yes, we had to do some guessing about the decisions we were making about her care, since she was unable to communicate with the doctors. We decided she wouldn't have wanted to have any heroic measures simply to keep her alive at all costs, because at that point she was only slightly lucid about one hour a day.
But caring for her was a sweet, sweet joy I wouldn't trade for anything. With the help of Hospice, I learned a great deal about the details of dying. We periodically gave her a few spoons of Jell-O or ice cream and kept her comfortably sedated much of the time. We put the phone to her ear and she "talked" (mostly listened) with all her grandchildren during the short times of day when she was able to respond to us. When my sister read her the 23rd Psalm, she said, though with difficulty, "Thank you."
When she finally died, breathing her last with my daughter sleeping on a chair next to her bed, I believed our care for her was just what she would have wanted if she could have told us. And, as it turned out, when we went through her papers after the funeral, we found a signed directive for medical care indicating she wanted only comfort care if she was unable to communicate and illness or accident predicated no reasonable chance for recovery. This is just what we had done.
But it would have been much easier if we had followed the advice I give in When is it Time to Talk About Stuff That's Hard to Talk About?, and had had a conversation with her before she came to visit or that, at minimum, she had carried a card in her wallet, as suggested in the article.
All in all, we were satisfied with the care my mother received in those final weeks. And I was pleased all four of us children agreed to use Hospice and to let nature take its course. Letting a loved one go by slipping away is easy when you know that death is inevitable and you don't want to prolong a person's misery.
Incidentally, here's a bit of advice if your relative might die outside the state where their body will be buried. Ask them if they could please make things simpler and die on a weekday when there is time to get the death certificate filed with the coroner's office. There is a special problem with shipments of bodies out-of-state (apparently the health department in each state is afraid a body might bring in plague if it isn't certified) and we couldn't get my mother's body released in time for her to get back to Dayton in time for the viewing that would be attended by her friends. So when those friends came to the funeral house, they found a picture of her on top of her casket. She would have thought it was a hoot and been absolutely delighted, even if the whole affair was a bit disconcerting for her family.
©2002, Arlene Harder, MA, MFT |
