Thursday, April 18, 2013

Who Reproduces the Reproducer?

I ran across this question when I was a graduate student in the 1980's. Neo-Marxist feminism was a popular theoretical construct at the time. Regardless of what you think of Marxism or feminism, the issue is an interesting one. The idea is this: social groups have producers and reproducers. The producers--traditionally a society's men--are cared for by the reproducers--women--so that they can continue their labor. Those who work in the public sphere are "reproduced" through food, clean shelter, clothing and care provided by those who maintain households and families.

Caregiving is the work of re-production, not in the biological sense, for it can be carried out by both sexes young or old in a pinch, but rather in the social sense. Caregivers reproduce the social order by taking care of those who labor outside the home and by shouldering the burden of those who cannot--children, the ill and the elderly who can no longer do productive work. The problem posed by this view of reproduction is, who takes care of the caregivers? 

Within small close-knit societies other caregivers share this work. The tasks of reproduction, both biological and social, are shouldered by groups of women (post-menopausal, child-bearers and girls) in so-called primitive social groups, and sometimes by men who are too old for the rigors of hunting and farming. "It takes a village to raise a child" and also to feed hunters and farmers, to build houses, to gather wild foods and plant gardens, to tend the sick, to care for the elderly and to watch with the dying.

The problem in modern post-industrial society is that everyone who is able-bodied is pressed by the cost of goods, food and housing into the workforce in order to keep the economic engine sputtering along. Though both men and women are wage-earners now, a number of studies show that women still shoulder the additional burden of social reproduction. How does this impact caregiving for elders and especially for those of us who are dealing with early-onset spousal dementia?

Okay, now I'll take off the academic mask and share with you how it affects those of us in the twilight world of younger spousal dementia. It's a lonely purgatory. We try to work for a salary and to use our real talents and give care at the same time, filling in the gaps with paid help if we can afford it, with willing friends, if they themselves are not wage-earners, with community volunteers, if they remember to show up. 

At some point, this very unstable house of cards collapses and we have to stop working outside our homes. The beloved simply can't be left alone for any period of time. Perhaps there is an interim where employers allow us to telecommute, but at some point the moment-by-moment attention required by our sweethearts requires us to skimp on our work, leading us to quit or be fired. According to the Americans With Disabilities Act, employers must accommodate increasing disability demands on the caregiver. But at some point, no employer realistically can make the necessary allowances for the intensity of dementia care.

Post-employment, we work so hard that we wonder how we ever could have held a job. The disease worsens, the demands grow. Sleep becomes a brief uneasy bout of dreaming that our spouses have wandered off, that we have forgotten to feed them, that they have become abandoned infants. Why is this not like raising children? The simple answer is deterioration. If you saw the film, The Curious Case of Benjamin Buttons, you saw the process. The person starts out intact, but ends up utterly unable. The light lessens month by month, at an accelerating pace in the late stages. 

The stress is somewhat alleviated if there are adult children nearby, helpful relatives, altruistic friends, a close-knit neighborhood, an involved and committed church group.If there are not, or if their numbers are few, the primary caregiver--wife or husband--ends up in a squirrel cage of chasing outside help, overworking, exhaustion and self-recrimination, even when going far beyond the boundaries of normal endurance. And what advice do we hear from dementia caregiver counselors, websites, books? "Be sure to take time to care for yourself." Reproducer, reproduce thyself. 

When I see or hear this, I always think of a cartoon I saw years ago. A disheveled young man is asked the question, "Would you do what you're doing now if you were going to die in six months?" To which he responds. "Oh, thanks, of course not. And if I don't die, will you pay my rent?" So thanks, helpful books. And will your authors come over and stay with a husband or wife every afternoon so the caregiver can get out and exercise, have fun with friends and pursue her/his life vision?

This advice is predicated on the assumption that every caregiver has the financial and community resources and family/friend networks necessary to leave their charge for hours at a time to "reproduce" their own energy and well-being. It's notable that almost none of the writers or websites suggest how the caregiver might actually do this self-reproduction in the absence of lots of money, adequate daycare facilities and family or buddies. 

In reality, with senior day care centers over-enrolled or oriented toward calm elderly women who like to play bingo, and truly adequate assisted living and nursing home care costing upwards of $5,000-$8,000 per month, not so many real-life people can follow the self-care advice. We are left with the difficult choice of trying to care for someone at home who is utterly incapable of even a few minutes of self-directed activity and placing them in publicly funded nursing homes that provide care that is less--too often far less--than optimal. 

I face that choice today. I'm meeting with hospital staff to discuss Pat's discharge from the Geriatric Psych unit. I know that I can't take him home again. He needs 24-hour care. There is one good nursing home here that accepts Medicaid, but their long-term beds are full. We've searched at least a dozen in San Diego and San Luis Obispo/Santa Barbara, but have been turned down by all of them because Pat is ambulatory and has a history of agitation. One in LA said yes, but they asked for $11,000 up front while they waited for Medi-Cal reimbursement.

 The hospital case worker and the attending physician may insist that I let them put him in a nursing home on the impoverished south side of the city. It's based in an old motel that looks like a rabbit warren. Or in another, where a dysentery-like disease sweeps through periodically. And I will resist, stand my ground for my husband and incur their hostility. But it's my job to see that Pat gets the best care possible. Until that's available, he's safe and comfortable where he is and still making progress in recovering sound sleep and a calm alertness. That's enough for me. I hope it's enough for Medicare to continue paying the bills.

You know, I'm really trying to make these essays less of a downer for you, dear reader. They're intended to be educational as well as personal. And they're also written to help other caregivers know that they aren't alone, but facing a common problem. One nursing home reform advocate I spoke with in California told me that it isn't that I'm not trying hard enough to find placement--the truth is that very very few facilities anywhere in the country will take patients like my husband under Medicaid. He's at once too healthy and too sick for their services. The reality, I think, is that they don't want to pay the insurance costs of housing people like Pat, because Medicaid reimbursement is so much lower than the monthly fees they get from private-pay residents.

Pat certainly isn't the only relatively young, ambulatory and healthy-from-the-neck-down dementia patient in the United States. Many thousands fall through a hundred holes in the safety net. These cases are where reality bites in national healthcare reform. I hope you'll join me in talking to your Congress-people about real systemic change  and compassionate services for former producers and current reproducers. Changes are afoot and, though they may not help the current generation of dementia patients, I do believe we'll see transformations in treatment and care in our lifetime.


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I welcome comments on the content of this blog, especially stories from other husbands, wives and sweethearts caring for spouses/partners with dementia. It's a hard road and we need to walk with each other along the way. Thanks!