Caretakers

Over the past ten years, I have talked to many caretakers of ill partners. Many have been angelic; many have been depleted; all, in their own ways, are heroic. Here is a montage of what I have heard. I am interested in what you have to add from your experience



How profound and humbling and degrading to prepare bland, easily digestible foods and spoon feed them to your partner who on that day at that time is too weak or feverish or pained to be able to feed himself. To wipe the sweat from his face after rounds of chemo. To maneuver him into the shower and wash the urine that leaked down his legs from a bladder no longer control in his control. To run to his side when he calls out, fearing that, this time, something really bad happened.

How sacred it feels to read aloud to him from his favorite novel until the strain etched in his face by pain slowly softens, and he slides into sleep. To hear him snore is the sweetest song.

How desperate and hopeful and tedious it feels to discuss endlessly the algorithms of treatment options. Should we (not you) stop this medication, which seems to be losing momentum, and switch to that medicine, which has untested side effects? Should we travel to Johns Hopkins or the Mayo Clinic or the Cleveland Clinic to see the specialist whose monograph on gene therapy or angiogenesis we stumbled across in one of hundreds of web searches? Would it be bad or good to combine acupuncture, Chinese herbs, and chemotherapy? How do we know whom to trust?

How rageful it is to lose the time you were supposed to have, the money that was to build a retirement cottage on the lake, the thousands of moments that were supposed to flow without constraint from one mindless activity to the next.

How tragic when your sacrifices are met with indifference, resentment, or manipulation. When the sick person instead of gratitude, shoves his resentment at his own condition in your face, onto your shoulders, inside your head, and demands of you what will never again be his. And when family and community expect you, without permission, to truncate your world in order to extend his comfort and safety. And when you berate yourself for an instance of selfishness, and eventually have been worn so thin that you can no longer distinguish between selfish and selfless. When automatic pilot takes over your behavior and you shut down all feeling except anxiety.

How relieving and terribly lonely it is when it ends. And what a long way it is back to rebuilding yourself.

Grand Rounds is Up

This week's Grand Rounds, the best posts of the medical blogosphere, is up at two sites -- Kevin M.D. and Emergiblog. Dr. Val is the host. Her new blog - the Getting Better Blog will be active soon.

Putting Illness in its Place: Betty & Peter's Story of Pancreatic Cancer

Couples dealing with illness understand too well how illness turns a relationship of equals into one of patient and caretaker. Autonomy slides into dependency; activity is regulated not by interest but by stamina, and time gets measured by intervals between medication doses.

Illness gets triangulated into the relationship. The intimate dyad becomes an unwelcome menage a trois in which illness winds up as the master.

Betty was magnetic. Her deep green eyes and glossy black hair made you want to move in close for a better look. Her smile made you want to be her friend. When she told her wonderful stories about life, spirit, and nature you felt as if she were taking you for a ride to a place that was familiar, but beyond where you could ever get to on your own. Betty lived large. She climbed mountains, swam lakes, sang like a diva, and when she listened to you, you felt as if you were part of something special.

Her husband Peter adored her. He loved sitting in a corner and watching her captivate a room of people. Peter was more private and analytic. His world was a place of numbers that usually tallied accurately and led to the expected conclusions. He was Betty's anchor. Betty was his magic.

Over the period of a few months, Betty, who was thin already, started losing weight. Her appetite diminished, and she began having stomach aches. Her clear eyes looked a little cloudy. After several visits to her primary care doctor and a few specialists, she was diagnosed with pancreatic cancer.

Cancer soon became the dominant partner in their relationship. Chemotherapy became the organizing principle in their lives. Betty felt as if she had become a character in someone else's story and no longer told any of her own. Instead of reading biographies and books on finance, Peter dedicated his free time to researching pancreatic cancer. They stopped talking about dreams and horizons, and focused their attention on the size of her tumors and ways to mitigate the effects of chemo.

Their life was shrinking while, ironically and luckily, the treatments began to have a positive impact and doctors were offering her more time. Slowly Betty and Peter realized that their trajectory was not going to be a steady descent towards death. They were granted grace periods during which normalcy was possible. The problem was that they had constricted their imaginations and their hopes so much and had been submerged for so long in a world where normalcy was equivalent to pain and illness that they lost touch with how to live.

They began trying to reintroduce pleasure into their lives. One day, as they were driving along the back roads in rural Maine, they stopped for a picnic lunch by one of those astounding, pristine, hidden inland lakes. They noticed an abandoned log cabin on the shore and went to investigate. It was for sale, and they bought it.

The cabin emancipated them. The lake restored them. As they began transforming the cabin from a dilpadated shack into a rustic palace, they were transformed. Instead of monitoring tumor growth, they measured cabinet sizes and plotted out space for a garden.

I like to imagine Betty sitting in a wooden rocking chair on the front porch of the cabin. I can hear the squeaks her chair makes as she gently rocks. Her eyes are half closed. The reflection of the autumn sun bounces off the lake and steaks her raven black hair with blazes of fire.

How do you disentangle illness from the fabric of your relationship? How do you contain illness in its proper place, as intruder, and not as intimate partner? I think we all need to find our equivalent of the cabin by the lake.




Note: This story was inspired by a friend's experience, and thi s post is in honor of her journey . All identifiers have been changed.

A Love Sonnet for a Rainy Day

It's gray and raining. I'm worried about my father's health, my mother's ability to cope, the people who live in the path of a hurricane, and the wreckage of the American political process. So here's one of my favorite love poems by Shakespeare.

When in disgrace with fortune and men's eyes,
I all alone beweep my outcast state,
And trouble deaf Heaven with my bootless cries,
And look upon myself, and curse my fate,
Wishing me like to one more rich in hope,
Featur'd like him, like him with friends possess'd,
Desiring this man's art, and that man's scope,
With what I most enjoy contented least:
Yet in these thoughts myself almost despising,
Haply I think on thee,--and then my state
(Like to the lark at break of day arising
From sullen earth) sings hymns at heaven's gate;
For thy sweet love remember'd such wealth brings
That then I scorn to change my state with kings'.

Grand Rounds is up at Apple Quack

It's a good read - check it out.

Living With A Partner Reduces Risk of Alzheimer's

(The following is the press release describing research from the Karolinska Institute -- one of Europe's largest medical universities, located in Sweden)

Living with a spouse or a partner decreases the risk of developing Alzheimer's and other dementia diseases. This according to a study by Krister Håkansson, researcher in psychology at Växjö University and Karolinska Institutet, Sweden. The results were presented for the first time yesterday at the world's largest dementia conference.

"This is, for me, an overwhelming start," says Mr Håkansson. "It's the first study I've done in this field, and the results are astounding. They indicate a very strong correlation between this type of social factor and the risk of developing dementia."

The new findings are based on data from a Finnish study, which was unique in that 2,000 people were examined at the age of around 50 and again twenty-one years later. Normally, dementia researchers only study late-life individuals. Previous research has shown that an active lifestyle, both intellectually and socially, can decrease the risk of developing dementia; since a shared life often entails considerable social and intellectual stimulation, the point of inquiry of this present study was whether living with a spouse or a partner can help to ward off dementia.

The results show that people living with a spouse or a partner in midlife ran a 50 per cent lower risk of developing dementia than people living alone, even when controlled for other risk factors, such as age.

How long a person had been single and for what reasons also affected the chances of developing dementia. Those who had lived alone their entire adult life ran twice the risk, while those who were divorced in midlife and remained subsequently single ran three times the risk.

Widows and widowers ran the greatest risk Those at greatest risk of developing dementia diseases were people who had lost their partner before middle age and then continued to live as a widow or widower. The study showed that the chances of developing Alzheimer's for these individuals were six times greater than for married couples.

"This suggests two influencing factors: social and intellectual stimulation and trauma," says Mr Håkansson. "In practice, it shows how important it is to put resources into helping people who have undergone a crisis. If our interpretation will hold, such an intervention strategy could also be profitable for society considering the costs for dementia care."

Grand Rounds at A Chronic Dose

Check out this week's Grand Rounds at A Chronic Dose for some interesting reading.