Lessons Learned
I have been chronicling the deaths of my mother, my father-in-law and my father for the last 2 years. I have learned some things about death during that time, and it’s appropriate that I share them here.
Dying Is Hard Work
It takes effort to die. Getting up in the morning is hard, dressing and washing is hard, eating is hard. Grinding through the pain, the depression and the discomfort requires a strength of character I believe most people don’t discover they have until they start dying. The effort required will almost always lead to frustration and anger. The secret is not to personalize this anger. It’s directed at the disease or infirmity, not the caregiver.
Doctors Know Nothing About Dying
For the most part, GPs and specialists know very little about the mechanics of dying, and their innate need to fix things often gets in the way of dying well or comfortably. Doctors in med school spend very little time on end-of-life or palliative care. Their instinct is to fix, to cure, to dose, to intervene. There are doctors trained as specialists in palliative care, and they are rare and precious as rubies.
My mother’s long-time GP mixed up her anti-nausea medication so that it actually made her sicker when she ate. She wouldn’t prescribe significant pain relief, and she wouldn’t come clean with my mother on her life expectancy. Once we hooked into the local palliative care network, though, everything changed. Her new doctor was intimate with death, a friend of the dying, and supremely knowledgeable.
When it came time for morphine, the palliative care doctor didn’t dispense capsules on a daily basis. She gave mother a big bottle of liquid morphine, carefully told her it tasted pleasant and that the whole bottle would kill her painlessly if she didn’t take care. She left it at that. Delicate, and yet definitive.
The Dying Need Their Dignity
Dying is the ultimate loss of control, so control over lesser things becomes critically important to the dying. My mother was adamant no one was going to see her on her death bed except the doctors whose business it was to be there. In fact, she forbade visits from her children after the cancer she died from started to affect her looks. My father and Kathie Rose the caretaker were the only ones she saw in her last months.
Even as he approached death, ravaged by cancer that wouldn’t allow him to eat, my father-in-law found driving his big new Cadillac an important release, taking his elderly friends for doctors’ appointments and shopping.
My father, in his last days, resisted being moved to a higher level of care in his retirement home, despite the fact it was needed, because they kept the “droolers” and the “zombies” on that floor, and he had all his marbles and didn’t belong with them. Also, he would be reduced from his 3 room suite to a single bedroom and, despite the fact he never used the space in his suite except the bedroom, this was seen as a demotion.
The Dying Drink Too
My mother was drinking wine as long as she was drinking anything. My father hosted a big dinner party with all his children the night he died, and he enjoyed a couple of glasses of wine with dinner. My father-in-law, although he almost quit his scotch habit after his diagnosis, still treasured a wee dram on special occasions. “Nuff said.
The Dying Really Don’t Have Time For You
The survivors think it’s all about them. How sad they are, how much they’ll miss the dying, how important it is to say that special thing, make that final contact and correct a lifetime of misunderstandings. Oddly enough, the dying don’t care much about that. They have a hard job to do, and it takes up all their time. A palliative care nurse once listed the top five final regrets she had heard from the dying, and the most common was “I wish I hadn’t spent so much time on my children and spent a little more time on me”.
This is what happens at the end. Fear and pain are constant companions, uncertainty and regret the norm. There is little time to worry about the spectators. The best and most helpful thing caregivers can do at the end is manage pain, comfort without judgment and listen. Mostly listen.