I received an email from a friend recently who was about to get on a plane for New Zealand. She was going to see her father, who was ill. Her trip brought up memories of my own mother's life and death.
My mother's death was nothing like it is in movies or on television. It was a seven-year marathon of emergency rooms, operations, doctors, nurses, specialists, phone calls, hospital stays, nursing homes, insurance forms, living wills, powers of attorney, mountains of paper work, rehabs, procedures, tests, drugs. At one point my mother was on a total of 22 different medications, with so many horrible side effects that they didn't know what was a side effect and what was her illness.
In 2004, she was so close to death, she was transferred to a hospice, where they took her off almost every medication and just tried to keep her comfortable. The doctor told me she would probably not last through the weekend. Thanks to the nurses, she slowly came back to life. Everyone who shared my mother's room during the two months she was there died. My mother lived another five years. She did not want to die; she loved life, despite the fact that she never missed an opportunity to complain about everything -- everything except men. She loved men (she grew up with three brothers) and flirted with abandon until the final weeks of her life. She was 96 when she died and if she were still alive, she'd kill me for telling her age.
Those years of being a caregiver were some of the most challenging of my life. I was torn in so many directions -- my own daughter was an adolescent and needed me. My marriage suffered. I was constantly dealing with emergencies and it became impossible to concentrate on work.
Most of our immediate family lived a few hours away and would only come occasionally to see my mother. I was consumed with resentment for a long time, but then a social worker told me that this is the case with most families. One person steps up and the others let them. I had to learn how to take care of myself. "Put your own oxygen mask on first."
When my mother was in the hospice for two months, I got a Swedish massage every other week. I began reading Swedish mystery novels by Henning Mankell, which enabled me to escape into some fascinating mysteries. In my mind, I was living part-time in Sweden (a lovely country, except for the weather and some gruesome fictional homicides).
I also learned to pace myself. It is the most emotionally exhausting challenge to be a caregiver and few people ever say, "And how are you doing?"
When I think back to those years, trying to make the right decisions, not really knowing what "the right decision" even meant, attempting to keep my mother alive but not suffering, I know I made mistakes. Some doctors and many nurses were incredibly kind and compassionate, and I wouldn't know how to begin to thank them. They saved both my mother's life and my own. They are the true heroes in our world.
Here is the bottom line of what I learned: You need to take care of yourself. When you are depleted, there is nothing you can do for anyone else. And if you get a chance to listen, if they feel like talking about their lives, it may be the thing you remember most. My mother told me stories about her childhood, about her younger brother, David, and how they used to take the el (elevated train) to a bakery in downtown Brooklyn to get the most delicious cream puffs. She told me that her mother loved movies so much that all the mothers in the neighborhood used to take their infants in their strollers to the theater and leave them in the lobby while they watched the movie. An usher would walk down the aisle periodically and say, "Baby in the gray and white stroller crying," and that mother would run out and take care of her child.
She also told me that during World War II she was living with her father when my dad was away. He came home on leave and my mother got pregnant. She already had a 2-year-old and my grandfather told her she couldn't have another baby in the house, so she had an illegal abortion. She told me how scared she was, that it was a frightening experience, and that she did it on her own, all alone.
What I also learned is that dying can be a long, slow process. It can be so long that at times you think they will never die and it can be so terrible you begin to pray that they will.
And then eventually they do. Even if you missed the final moments as I did, I was able to sit with her for hours and talk, and watch television shows about traveling the world, which she never got to do, and watch hours of Oprah.
It is a great service to show up for someone and go with them through the last chapter of their lives. I heard a doctor say: "When I see lots of family members in the waiting room, I don't worry so much." And though at the time, it feels as if your own life got lost somewhere, it eventually turns up again.
I recently found out about an organization called Share the Care, (sharethecare.org) which helps people set up groups of caregivers -- family, friends, co-workers, whoever is willing to help -- so that no one person is burdened with the entire responsibility. This sounds like a brilliant idea. I also recommend finding an organization like Friends In Deed (friendsindeed.org) which helps people cope with life-threatening illness, caregiving and grief. When you are part of a community of people who are coping with life's most difficult challenges, you feel so much less alone.
It is often said that our number one responsibility is the care and feeding of our own soul. But it is a tremendous gift to show up, in whatever way we can, for the people we love at the end of their lives.
For more by Robin Amos Kahn, click here.
For more on caregiving, click here.