The following articles stopped me in my tracks this week, not least because they relate to my last report, “Family Caregivers are Wired for Health.” Please share what you’re reading — or your thoughts about these articles — in the comments.
1. Dementiaville: How an experimental new town is taking the elderly back to their happier and healthier pasts with astonishing results, by Edna Fernandes (shared by Nick Dawson — so #whatifhc)
Some patients from wealthy backgrounds are made to believe their carers are servants, while others of working-class origin believe their carers are extended family members. The overall effect has been to convince the residents that they are not really patients but neighbours.
The posher ‘residents’ dine off lace tablecloths on a table laid with fine glass and porcelain; meals are brought to the table by ‘servants’ who remain on standby in the kitchen. Their relationship with the residents is deliberately formal and submissive. Conversely, the working-class residents prefer meals to be casual, taken with their helpers or ‘family’, maybe in front of the TV.
Meanwhile, the homes of the Indonesian residents are decorated with flourishes of their indigenous culture: pictures and colours of their other homeland. Their food is a mix of Indonesian and Dutch dishes.
2. Moments of Decision Making, by Judy Fox (shared by Bill Thomas)
As a caregiver and living most of the time with my mother, I know her better than any doctor. I know how sensitive she is to medication; how easily she can slip into hallucinations and have adverse reactions. I have learned from experience. Because doctors unfortunately don’t have the time to sit down for long periods of time and really get to know their patients and because drugs are often the preferred method of treatment, this added input from the caregiver is so essential.
3. When you live with a serious illness – and a bad marriage, written and shared by Carolyn Thomas
Just being married is not in itself a guarantee that women will be supported by their spouses during recuperation from chronic illness. The prognosis, for women particularly, seems directly linked to marriage quality.
This last one reminded me of the work that my friend Alexandra Drane and her team at Eliza have been leading, looking into what they call the Unmentionables — how a bad boss, bad relationship, stress, etc. can deeply and directly affect people’s health outcomes. One of Unmentionables I thought of when analyzing data on caregivers was my personal worry for people who do not have someone to help them when they get sick. Now I’m worried about people in bad relationships who get sick. Not to mention the fact that caregivers are more likely than other adults to report health emergencies.
The Unmentionables of health will be discussed once again at the Health 2.0 conference in California in October. I’ll be in the front row.
Carolyn Thomas says
Thanks so much Susannah for including my “bad marriage” post in this impressive list. Thanks also for that link to The Unmentionables.
The stat that stopped me in my tracks while writing my post was this one: “men are seven times more likely to leave a relationship because of their partner’s serious illness than wives are”. So much for health care providers and their perhaps unrealistic assumption that if a spouse is accompanying the patient, adequate post-discharge care will be provided at home. Maybe. Maybe not.
Maybe a future focus for a timely Pew survey?
Susannah Fox says
One of my primary motivations in life is to help people stay based in reality. It’s turning out to be more of a Zen pursuit than I expected. I suspect you may feel the same way (maybe we need a support group? Or is that just Twitter?)
That data point is indeed essential knowledge for clinicians who may be counting, unconsciously or consciously, on a patient’s family to step into the caregiver role upon discharge.
Thanks for all you do!
Apropos of Dementiaville recco, did you see this Rebecca Mead piece in The New Yorker? I’m partway through. Amazing.
In fact that whole issue is amazing. The New Yorker: a national treasure!
Susannah Fox says
Yes, it is amazing what’s available now — for some, anyway. Thanks for sharing it!