The books pile up these days, and there’s so much good information out there that I really want to read them all. Many come through publicists who know I read and write about books on aging, dementia, brain research, pharmaceuticals, and all kinds of caregiving. Many just show up in my mail box, unannounced.
One of the former, titled My Mother, Your Mother, by Dennis McCullough, M.D., recently rose to the top of the pile and I’ve spent the last couple of weeks reading it (along with a few others, as I tend to have multiple books lying about, each partly read and heavily marked).
Early on, I’d earmarked McCullough’s book for an article I would write for OurAlzheimer’s. Last week, after I had finished the book and was checking my e-mails for the day, I saw an alert on a New York Times story titled, “For the Elderly, Being Heard About Life’s End,” by Jane Gross. I also had received several e-mails from colleagues who had seen the story and knew I’d be interested. For her article, Gross interviewed families and elders about their thoughts as the elders approached life’s end.
Fellow blogger Dorian Martin also picked up on the story and wrote about it for OurAlzheimers in a post titled, Slow Medicine: A New Approach to Elders’ Quality of Life. She and I have both lost parents to long, slow deaths. Neither of us chose “heroic measures,” and as far as I know, there were none offered. But I do know it happens. I do know painful, expensive medical procedures are performed on dying elders- procedures that everyone involved knows won’t help them live a longer and/or better quality life. It’s just what is done for that particular medical condition.
I couldn’t, as I read My Mother, Your Mother, get the image of an aging couple, who were neighbors of mine, out of my head. The elder gentleman had bladder cancer. He was going to die. Please realize that this was about a dozen years ago, and I hope and pray things have improved since then, but this gentleman was in his last painful week of life. He was at home, with no hospice care (which appalls me now, though I had no influence and not a lot of knowledge about it at the time).
According to his very angry widow, who was talking with me a few weeks after the gentleman’s death, his doctor scheduled another invasive, horribly painful, expensive - and useless - bladder exam for her husband, “just to see where he is.” The anger of this gentle, long-suffering elderly lady was palpable. My own anger grew as I listened. What was this doctor thinking? Was he just after the money he’d get for scheduling one more “procedure?” I don’t want to think that, but I don’t know what else to think. She was more devastated by what her husband had to endure in that last week than she was about his death. She knew he was dying and had grown to accept it. But this?
The idea that a dying elder can’t be left in peace to be with family, and have medication to give comfort without trying to cure what can’t be cured, has always been unacceptable to me.
When my aunt was dying, she was filled with cancer. The surgeon did exploratory surgery and found that not an organ lay untouched by the disease. The medical team stapled her shut and asked my mother - her sister and the only one who could answer for my aunt - if they should give her a feeding tube. My mother asked what purpose that would serve, as my aunt wouldn’t come out of the coma she was now in. Mom was told that if they gave her a feeding tube, my aunt would “last” about six weeks. If not, she would die in about 10 days. Either way, she was unconscious, on morphine for pain, and would die.
My mother was not a kid, understand. She was about 70, at the time, and she was incredulous that this question was even asked. She said, “I love my sister Why would I put her through six more weeks of this?” That settled it, and my aunt died peacefully, in just a few days.
My Mother, Your Mother explains the “stations” families and their elders go through, as age becomes an issue. There is the station of stability, when all are aware that certain things should be talked about and done, such as Powers of Attorney and Health Directives and personal preferences. There is the compromise station that is often a time of some conflict between generations as the younger generation realizes the older generation needs help, however the older generation may or may not be willing to accept that help. But with love and education, compromise can be reached.
Respect for the elder is key, here. It is the elder who is coming up on the final years of his or her life cycle. The family, hopefully, will be a part of this journey. They will walk it together, as death is part of life.
Our society at large seems to have this huge denial about death being a part of the life cycle; in many cases, it’s the medical system that has fostered this and made families fight to let their elder die with peace and dignity. After all, doctors are trained to save lives. To lose one is to fail. Therefore, everything must be done to “save” the person who is dying.
These days, the monetary cost of this attitude is forcing another look at the issue by many in medical fields. I’m hoping that some are driven by compassion, as well.
Most elders that I’ve known have been in favor of slow medicine, all along. They just didn’t have a name for it. McCullough has now given us one. _Slow medicine _. It even sounds peaceful.
My grandmother, bleeding from every orifice in her body, told my mother, “I’ve done all I want to do. I’ve lived my life. I’m tired. Please make them let me go.”
My own mother, in her later months, said to me, “Can’t you just give me a little black pill?” I had to tell her, no, I couldn’t. But I pledged to do everything possible to help her be comfortable, and we took the slow medicine approach, though again, we didn’t know what we did had a name.
McCullough’s book takes the reader from the compromise station to the crisis station - the fall; the stroke; whatever happens to take the elder into the mode closer to the end. Then there is the recovery station. Recovery from the crisis is almost never complete, so we quickly come to the decline station. We watch, and try to help, through the decline. Then we find ourselves at the prelude to dying station and, finally, death.
When the idea of slow medicine is discussed by the family in the early stages (or at the early stations, as McCullough calls them); when the family can come to grips with the fact that the elder will eventually die - it’s a matter of when not if; when the whole family works as a team with physicians who are trained in giving the best care available to the elder - which is not always the most modern intervention; when all work together toward the natural end of the life cycle, then death can usually come with a certain peace.
That is not to say any death is easy for the person dying or his or her loved ones. However, when the elder is heard; when the elder’s best interest is at the heart of the treatment (or lack thereof), and not the ego of the health care system; when the family and elder can close the circle, in peace, together; then slow medicine has worked.
Slow medicine is, in my opinion, the “modern medicine” I have already chosen. I will keep my copy of My Mother, Your Mother, and push each of my children to read it. I’ve already done the legal paperwork, so that, should I become ill, my kids know what to do. I expect to have at least a couple of more relatively healthy decades ahead of me. However, I want my sons to know what to do when the time comes that they are in the driver’s seat. To me, this book says it more clearly than I ever can. Come to think of it, I may buy them each a fresh new copy for their coffee table reading.
My Mother, Your Mother, by Dennis McCullough, M.D. is published by HarperCollins (2008) and can be found in bookstores and online.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.