I don’t fear death. I do fear dying, however.
Modern medicine can perform seeming miracles in some situations. But it also can ensnare patients in a tangle of cords, tubes, machines, personnel with varying degrees of sympathy and helpfulness, rigid procedures and schedules, being jabbed by sharp needles, sounds, lights, sleep disruptions, disturbances, loss of privacy and control, insurance issues, hospital food, and lots of other things that make life a living hell.
My feelings were reinforced by a recent experience with one of my wife’s relatives who is terminally ill with cancer. We visited him in the hospital and I was glad that he decided to go into hospice.
I sent the following email to my wife describing my ideas for him. This is slightly edited to protect confidentiality. I call him “Joe.”
I am really glad that Joe is going into hospice. It was so sad to see him entangled with the medical system and the prospect of a much more miserable and prolonged period of torture if he pursued treatment. I gather that there is no realistic prospect of medical improvement – only an extended period in hell if he stays in the medical system. This certainly reinforces my desire to use hospice services at home as soon as appropriate when my time comes.
I have thought about dying for quite a while. When I was 21, I did an exercise to plan my future by imagining that I was on my deathbed in my 80s, looking back over my life.
A few years ago, I read a wonderful book about dying, which I discussed in this post.
Part of my motivation in taking photos, curating photo collections, and writing journals is to bring back memories I can enjoy in my later years. This isn’t particularly focused on hospice time, though it can be a great source of satisfaction at that point.
And my oral histories on videos also are oriented to the death of the subjects so that their memories can live on after they die. I wrote this blog post about it, Making Video History, Revisited, which links to an earlier post worth reading too.
Some Ideas for Joe
Let me start by noting that all these ideas are dependent on Joe’s interests and capabilities. He may be on powerful painkillers, which put him to sleep a lot, make him fatigued, and/or make him mentally fuzzy. So he may not be awake or have the energy or focus for some of these things. This may change as time goes on. And he may have the energy to do some of these things in a number of short installments instead of long periods. So he should keep this in mind.
The first thing is to appreciate that he is freed from the effort of working with the complex medical establishment to constantly diagnose his condition and seek tests and treatments with low probabilities of success. Now he can focus solely on the certainty of his death, doing everything he can to be as comfortable as possible and enjoying this time as much as possible. So his interactions with the medical world can be much more limited. Instead of focusing so much on his current medical situation, he can use most of his time and energy on whatever he likes.
A good place to start would be conversations with his close relatives and friends. I bet they all would enjoy asking each other, “Do you remember when …?”
I assume that Joe has collections of photos and he may want to go through them. Photos are incredibly vivid and can bring back memories that people otherwise forget.
Ditto for other mementos – letters, materials from his career, etc.
He might particularly enjoy listening to some of his favorite music. As described in this post, listening to familiar music can activate even brains that otherwise are inaccessible to verbal communication.
He might benefit from “humor therapy” – finding humor wherever he can. “Scientists have been researching the relation between the mind and the body, especially in connection with the body’s ability to heal (a field called psychoneuroimmunology). Laughter appears to change brain chemistry and may boost the immune system. Humor may allow a person to feel in control of a situation and make it seem more manageable. It allows people to release fears, anger, and stress, all of which can harm the body over time. Humor improves the quality of life.”
His young relatives want to communicate with Joe and they might want to ask some of the questions in this website to help people make oral histories. It doesn’t make sense for them to see him in person considering his weakened state. But they might communicate in phone calls or FaceTime or Zoom if Joe has the energy, or in texts if he doesn’t. If he doesn’t have the energy to write, he could dictate things that others could send on his behalf. Obviously, the young relatives know some things about Joe but I’m sure that there’s a lot that they don’t know. And Joe may want to tell them about his memories of them when they were younger.
I gather that there are lots of people who have known and loved Joe. He will live on in their memories long after he actually dies. I assume that there will be a funeral and/or memorial service. He may want to write a message to folks attending the event or perhaps even record a video. Kind of one step beyond Tom Sawyer’s attending his own funeral.
One of the benefits of video streaming is that people can “attend” remotely from anywhere they have an internet connection. My sister and I recently remotely “attended” a memorial service for a relative who lived on the East Coast, and that was sweet. Although this may seem a bit bizarre, Joe may want to talk about what he wants for this event.
Joe might like to make a video oral history. As I mentioned, this might be a series of short conversations rather than a single long one. And I think it works best as a conversation rather than an interview.
Hopefully, he has taken care of legal matters about what to do with his property etc. after he dies. This is a good time to make or review such plans. Hopefully, he has a lawyer he trusts who can work quickly if needed and might visit him in person. Fortunately, your family doesn’t have conflicts about Joe’s care and property. Some families do have such conflicts and use mediators to work them out.
Obviously, this is a hard time for Joe, you, and your relatives. Hopefully, you all can work together to make Joe’s remaining time as good as possible.
Feel free to share this email with Joe.