I am a big fan of the NPR show, Hidden Brain, and today's episode was riveting for me. It details the life of a nurse who in her 50's is diagnosed with ALS. The story had insight for me, and resonated on personal levels because I know someone who was diagnosed recently and over time I have been learning a lot about the challenges of ALS patients. It's a cruel disease.
While the episode goes into great detail about how the family cope with the diagnosis, it also focuses on what we might choose at our death, versus what we say we want at our death. This woman saw suffering due to her job as a nurse. She made it very clear to her husband and sons she did not want to linger, she did not want to be lying on a ventilator. She said this many times. The husband faithfully and lovingly cared for her and in the early stages of ALS she is able to live, and travel and do the things she wanted. But soon she begins to have other side effects of this horrid disease, and eventually has a feeding tube put in. But she and her husband continue to walk and drive to the beach where he carries her food and feeds her. They were both living, they did not talk about death, they were still living.
But then one day, suddenly, they are faced with a decision, after she has an episode of her lungs filling up with mucous. They are told she has the choice of hospice, or to be put on a ventilator, which will be permanent. Nobody discussed it with her family, but she chooses the ventilator, and they are shocked and dismayed. But they eventually take her home, and set up an ICU basically, in the living room, and they have four days for 4 full time nurses to teach them how to use the equipment. On the final day, something goes wrong.
I won't go into more of the details of what happens, but the story really focuses on the idea that we really don't know how we might act if we had been faced with death on that day. Martyn and I have had the same discussions-no gallant efforts to make me live like a vegetable, or if I can't walk to the barnyard and can't use my limbs and do what I love, don't do the heroics. No tubes. And this woman was like that. She knew what the ventilator meant, with a tracheotomy. But she chose, when forced to in that situation, to live. Perhaps because she just wasn't ready at that very moment. Even though they all knew her disease was what would kill her, she wasn't ready at that moment.
Every day a hospice caretaker sat with her in the house, sometimes for minutes, but she would tell the husband [in her non verbal way] she just was not ready to die or admit defeat or go to hospice. But one day, the hospice nurse was there for a much longer time, and came out and told her husband she was ready to die. She died two days later in hospice.
I was so riveted by the show. The husband is the narrator as is one of the adult sons and it brought to light many things we all will face, most likely, at some point.
It also made me hate ALS even more than I did. I want my friend to die with dignity and no drama.