Thursday, April 29, 2010

AN OBSERVATION ABOUT CAREGIVING


Last night I was talking with a friend whose wife died of cancer ten years ago. The tribulations of caregiving so affected him that he now devotes a big chunk of his life to establishing support programs for caregivers. Having spent more time in caregivers’ groups than I have, he offered a perspective I’d hadn’t considered before.

“The ambient mood in a patients’ group is often energetic, like a response to challenge,” he said, “but caregivers’ groups are almost always sad.”

His appraisal resonated with my limited experience. People who have cancer (and, I suggest, other serious diseases) share a particular view of their experience, and their caregivers quite another.

Discussing what the difference might be, my friend and I agreed that the person with cancer feels his or her life is threatened. A face-to-face encounter with The Reaper puts all the cards on the table: it’s time to rigorously assess priorities, a process that transcends the dilemmas of daily life. Instead of wondering which laundry detergent to buy, we look critically at our relationships with family members, our role in the community, our place in the universe. In other words, our internal life shifts from the banal toward the mythic.

Not so for caregivers. Caregiving is drudgery, banality personified. An arguably common caregiver thought is, “How long will this go on?”, followed, of course, by a pang of guilt. We give care out of love, but as the disease process erodes our loved one the connection can fray, so that ultimately all that’s left is work.

Not everyone who personally suffers cancer responds at the mythic level, and not every caregiver takes on the task as pure drudgery. An eighty-year old man in our support group cared for his wife by himself while Alzheimer’s Disease diminished her. The last couple of years she couldn’t move or recognize anyone. She was essentially gone. For twenty-fours hours daily he fed her, cleaned her, turned her to treat her bedsores, saw to her every need. And he spoke of this assignment as a privilege.

She died a month ago. Our group considers him a saint, but he demurs. “It’s nothing special,” he says. “You love someone, it’s what you do, period. She deserved the best care. So will I when the time comes.”

2 comments:

  1. Hello Jeff, I hope this little message reaches you. Just wanted to let you know that yesterday I met with a group of Buddhist ministers who gather every quarter for training at the Jodo Shinshu Buddhist Center in Berkeley. I have the privilege of teaching them various counseling skills to use in their service work. The focus of the training yesterday was, how to help people coping with loss. I used the wonderful guidelines from your book and the ministers were so moved by your very Buddhist message that they will be ordering copies of your book to deepen their understanding of bringing their presence to helping people heal. It was so gratifying to see their response to your concepts. Thought you'd enjoy hearing about it. Hope all is well! Satsuki Ina

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  2. Hi Jeff,

    I came here because of your posting in the Well blog of NYT. I translated the works of Dr. David TS Shu in Taiwan and posted them in my old blog at www.atanone.net. Please click on Dr. Shu in the tag and you would find those posts there. Since you're working on Cancer Supporting group, I hope Dr. Shu's work may give you some ideas for some of your patients or the caregivers. Thanks, and I have bookmarked your post.

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