My mother is 85 years old. She lives with my brother in St. Louis. I live in California. Since June, she has had 2 heart attacks, 4 hospitalizations and has spent 2 weeks in an nursing home. She is now back home and uses oxygen 24 hours a day.
After this most recent heart attack–she had one 15 years earlier–she left the hospital with a new stent and an ICD.
While she was still in the hospital, prompted by me, she, her cardiologist and I had a conversation about the implications of congestive heart failure. It was a frank discussion. Her doctor shared his experience with his own parents and how they handled their own end of life issues. He thanked us for our willingness to talk about my mother’s wishes. He said it made his life easier to know what she would and would not like him to do for her.
My brother was not there for that discussion, although he lives with her and had actually saved her life, he had been turning a blind eye to the implications of her condition. I don’t think we would have talked this way had he been present.
Once she was released from the hospital, I was anxious to talk with her and with him about putting her affairs in order and making the house safer. It wasn’t easy to broach the subject, but I felt I couldn’t fly home without talking about and trying to acknowledge the new reality.
When the 3 of us were sitting together one evening, I told her how scary it was to go through this time with her, that I was glad she’d recovered and that it made me think there were things we needed to talk about and to get settled. I managed to talk with her (and my brother) about her living will, and to ask her if she wanted to be buried in New York next to my father who died in 1988. Together we made a list of her accounts and passwords. She showed us where the deed to the cemetery plot and other important documents were.
My brother worked on his computer and watched television as the discussion unfolded, interjecting comments from time to time. His overall view was that she is not going to die just now, since he still needs her to be here, and the proof that it isn’t her time rests in his getting her to the hospital in time to save her life, which he did. Were it not for his insistence that they go to the emergency room when she complained of indigestion she would have died that evening.
But talking about the specific ways in which their house needed to be refitted to accommodate her new condition feel on deaf ears. The stairs to the basement, where she did her laundry and kept her files and computer, had been built using uneven risers, had no railing, were a storage place for miscellaneous items, and rested on not the floor but several loose tiles.
My brother responded to my calling attention to the danger by becoming angry and defensive. My mother responded by defending him.
That was June.
In November, my mom went into acute renal failure, nearly dying, because she refused to use her oxygen as directed. This time, it wasn’t clear that she would recover. Just days after she’d been hospitalized, the New York Times carried and editorial about end of life issues and a document called Physicians Orders for Life Sustaining Treatment (POLST). I read that editorial, clicked on the associated links, such as the New Old Age and Geriblog, and put together a short bibliography, which I shared with my brother. I suggested that once he’d read what I’d read, we talk with my mother about drawing up a Transportable Physicians Orders for Patient Preferences, Missouri’s version of the POLST. He never read what I sent him.
Seeing my mother so vulnerable, trying to manage her care along with my brother in what I saw as an inferior hospital over Thanksgiving, and fearing that she would die before we could talk with her about what I thought was an excellent way to gracefully and with dignity live her last days, I made copies of my emails to my brother, printed out the NYT editorial and a brief description of how the TPOPP works, took them to the hospital, explained what they were about and asked my mom to read them when she had a chance so that we could talk. She agreed to read them.
The next day, with my brother present, I explained that I thought if we could get this last thing in place, we would be prepared for her dying, whenever that happened. I said it would be done, we could put it to the side for that time. That we would not have to deal with it again. That doing this would free us to live our last days together, knowing that we wouldn’t have to struggle with residents, interns, EMTs, nurses or social workers about what to do when the time came to make decisions.
At the same time, I raised an issue about money that I thought we should also rethink. That was a huge mistake. HUGE. My brother stormed out of the room. My mother got upset. Before I left, we never did revisit the end-of-life medical issues that had been my main concern.
When I got home to California, I called my mom and as we talked she’d told me that my raising those issues disturbed her deeply. She said, “Why is Marvina talking about this stuff with me now? I ain’t dead yet.” But then she said when she slept on it, she felt better. (I’m not so sure that was true.)
I felt awful. I apologized. I explained that I was afraid and sad and anxious. That my way of dealing with those feelings was to try to do concrete things that I felt I could control, since I had to leave her to return home. That she might die before I saw her again, and that I wanted to fix things, even things that I knew I could not fix.
It’s January. There is no TPOPP. I don’t think there ever will be.