Arthur Kleinman
When Curing Fails, Care Does Not
Ten years looking after his wife taught him this
Arthur Kleinman, The Soul of Care, 2019
Some illnesses cannot be cured. What is left to do. The answer Kleinman reached after ten years of caring for his wife.
What actually happened?
Joan Kleinman was diagnosed with early-onset Alzheimer's in her fifties. For the next ten years her husband looked after her, until she died. He was the field's leading authority on caregiving and says he was not remotely ready: he had taught it his whole life and only learned what it costs when it was his own. He wrote the decade down, and the book rests on one distinction. Cure has a point at which it fails. Care does not. Medicine arrives at a place where it can do nothing, and being there is still available on the last day.
Cure and care are two different goals
Cure asks whether this can be made to go away, and the answer is sometimes no. Once it is no, anyone working to that goal has nothing left to do. Care asks whether today can be made a little easier, which has an answer every single day, and the answer stays in your hands.
After nothing more can be done there is still a whole day to get through, and how it goes is decidable.
Most of care is presence, not technique
What he returns to is not nursing skill. It is being there: recognising which version of the person turned up today, absorbing whatever comes up without warning, staying a while longer in the hours they are still themselves. No training required, only time, which is the scarcest thing.
Half an hour sitting beside someone without speaking often does more than another trip to the hospital.
The carer is being used up, and that is a separate line
The least forgiving pages in the book are about his own collapse: exhaustion, guilt, resentment surfacing where he did not want it. He insists this is structural rather than moral. The cost of long care has to be seen and shared, or two people go down instead of one.
Two years of carrying it alone and the carer falls ill first. In long-term care that is the norm, not the accident.
How do I use it today?
Where you are: someone at home has an illness that will not be cured, or you carry a problem that is not going to leave.
Ask first: set cure aside for a moment. What one small thing would make today easier? Do that one.
Where it goes wrong: letting care stand in for treatment that should happen; or reading it as an order to carry it alone. A large part of his book is about what happens when you cannot.
Lines to keep
Treatment can be handed over. Being there cannot.
When medicine hands it back, what you can do is not zero.
Carry it alone and two people usually go down, not one.
Same situation, other people are asking
My parents got old and I don't know what I can do.Taking care of him has emptied me out.There are four of us and I'm the only one doing it.Two years of caring for her and I broke first.Caring for a parent · all 6 questions →If this one named what you are going through,
send it to someone who needs it, or keep it somewhere you will find it again.