When my son-in-law Charles died last week, I realized my wife's 2 1/2 year caregiving journey had come to an end.
Those endless days of sitting with Charles in chemotherapy, going to doctor visits, hunting down a pharmacy that carried his pain medication, buying groceries, running errands, arranging for him to see relatives in Los Angeles and Cincinnati, making sure someone else checked up on him when she couldn't...all these things and a thousand more were over.
She's going to be stunned at how much time she has, I remember thinking.
It was really hard seeing Charles so thin and so weak.
Charles had a chiseled, rock-hard body. He was a martial arts black belt, he taught yoga classes and ran marathons. He could do the splits.
Because he was so strong, so determined to beat cancer, and always upbeat, smiling and saying he felt fine, many of his relatives were convinced he would win the battle--they didn't visit with him as much as they now wish they did.
The good news though, for Charles, for my wife, myself, his two daughters, close friends and relatives was he chose to spend his final days in home hospice in his own apartment. He was only at the hospital for two nights, during which he repeatedly said, "I just want to go home."
My previous experiences with death have involved watching people spend prolong stays in the hospital and sudden, unexpected accidents. Both were horrible and I hope to never experience them again.
Home hospice is another matter.
Home hospice doesn't make dying wonderful, but if we simply have to die, this is the way to go. For Charles, like his hospitalization, his home hospice was only two days. The median time for others is 19.
Still those two days were remarkable for all the friends and relatives who trekked to his apartment from near and far. They came to visit and some stayed to help care for him. While he drifted in and out of consciousness, Charles was aware enough to know who was visiting him and near the end who was talking to him on the phone.
I remember looking up from where I was sitting in the next room and seeing a group of male friends hanging around his bed, which we had set up in the living room. Charles' jumbo screen TV was on and they were loudly joking about some recent NFL trades that were being discussed on ESPN.
It was just the kind of conversation Charles loved and I saw a flicker of a smile on his face. It was the last time I saw him smile, a moment I'll never forget.
Would this have happened at the hospital?
At the hospital I imagine the nurses would have told the fellas to tone it down or the fellas would have been too intimated in the first place.
When death finally came, at least 10 of Charles' closest friends and relatives were gathered near his bed and his youngest daughter lay beside him. The TV was still on, only now it was tuned to a music channel, an instrumental version of "Beyond the Sea" was playing.
We decide to leave Charles in the bed overnight before calling the mortuary. For the next several hours other friends came to see him and those of us who wanted to got to spend time alone with him.
Because so many of us had had a chance to say goodbye and to be with Charles we decided it wasn't necessary to have him embalmed for a viewing at the funeral parlor. Just as home hospice had seemed so natural, no chemicals seemed natural too.
I will be forever grateful to the hospice people who made this happen.
From now on, I will be an advocate for home hospice. It is a great thing that Medicare covers this service, which is not just for the dying but also for the relatives.
Hospice care is available only to people who are likely to die within 6 months. It is based on a philosophy that accepts death as an inevitable outcome for a patient with a terminal illness.
Hopsice involves a team caregiving approach to the final days. The hospice program provides a doctor, visiting nurses with special training, a "spiritualist" if you want one, therapist, and sometimes a homemaker. Family members can received fully paid grief therapy for up to a year after their loved one dies.
Hospice care saves money because providers (nonprofit and for-profit) receive $144.91 a day for their services, whereas hospitalization in an intensive care unit can cost $10,000 a day, including drugs, equipment and staff.
More and more people are opting to die at home, surrounded by loved ones, rather than in a hospital, attached to tubes and monitors. This is a good thing.
If you want to learn more about hospice, here are some links:
Next Step in Care
Mayo Clinic: End of Life
National Hospice & Palliative Care Organization
Hospice Foundation of America
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