Bodies

When people talk about dementia and Alzheimer’s Disease, we speak mostly of brains, that very specific physical site where the damage is done, where speech aphasia takes place, where motor control and social learning is lost. We don’t talk much about the rest of the body. At least, not until the very last stages when the ill person’s inability to swallow, maintain weight and move about signal the rapid muscle wasting that leads to death.

But just like the rest of us, people with dementia inhabit bodies that were once young and strong. The changes in these bodies may frighten the rest of us. A mom, always sturdy and beautiful, becomes a tiny creature the size of a child with translucent hands and a compulsive need to chew her tongue. A brother, once a hulking funny guy with football player shoulders and feet the size of Manhattan becomes soft, pale, somehow absent. A husband, who once could rouse desire with a sly glance, becomes a frail stooped old guy, his lovely muscles vanished under wrinkled skin that hangs like a worn shirt from his bones.

Still, and this is what is both a saving grace and a heartache for a spouse or sweetheart, the present body of the beloved is like a sheer curtain hung over the past. We look beyond what appears at a changeless beauty in the person with whom we’ve shared such important intimate years. There is still desire in the mix of emotions.

What do we do with that longing? How can it endure the spoon feedings, sleepless nights, sponge baths and changing of throwaway diapers? I don’t know, but I know that it does.

On a website for spouses of people with dementia, I found a number of chat threads that are amazing in their searing honesty and insight. One woman asks if it’s okay for her to date someone who has reappeared from her past as her husband, confined to a nursing home, is unable to recognize her, communicate or interact. She hesitates, because she loves her husband, because they are married, because they have children and a long history together. Even her sons tell her it would be okay. Still, she’s unsure. Another woman speaks of curling up on her husband’s bed in his nursing home room, molding her body to his, so that “their bodies can remember together.”

I don’t think any books have been written for spouse caregivers that include more than a cursory nod to the issue of dementia and sexuality.  The dementia caregivers’ bible, The 36 Hour Day, spends less than a page on the issue. There are books and websites on general caregiving that say a little more. But generally the attitude is that sick people don’t have sex and the people who care for them (unless they’re perverts who prey on the weak) aren’t interested in them “that way.” Nonetheless, recent research in Great Britain shows that married couples in which one spouse suffers from dementia continue to have sex well into the mid- and even early late stages of the disease, an average of eight years after diagnosis. Surprise!

For early-onset dementia patients and their spouses, sex is an even more acute issue. As my husband sagely said, “Well, I’m still a guy.” And I’m still his woman. But when you're caregiving full-time, you just don’t feel sexy. When you do make love on those increasingly rare occasions, you’re still caregiving, because your partner can’t remember the moves. It can be pretty funny, if you let it. “No, honey, you have to lie down.” “Hey, I’m over here!” “Wrong place.” Etc. 

The trick is to be adaptable. I was going to say flexible, but that’s a different kind of sex. You have to do more, give more, take care of both his/her needs and your own more often. The reward is that you can get back that lost intimate connection, that joy, even if just for a few minutes. You can see your beloved's eyes light up, see see his/her face relax in youthful happiness and contentment. It’s worth it.

When your beloved is in a care facility, of course, sex is difficult, maybe impossible. There are usually no arrangements for conjugal visits. But being physical is still important, as much for the caregiver as for the one with dementia. The other day, I walked on to the ward where Pat has lived for nine weeks now. He saw me and his face literally shone with joy. I reached out to him and he wrapped his arms around me, held me for a long time, kissing my hair and my cheek. It was so affirming for me. Pat is still there somewhere, able to remember me and his love for me. Usually I have to say “I love you” first, and then he will say it back to me. Every now and then, he will spontaneously whisper, “I love you.” I delight in those moments.

I give him lots of back rubs because his lower back hurts almost all the time. I don’t know whether it’s disc degeneration or just the bad hospital mattress. I always hold his hand when we are walking, put my arm around him when we are sitting side by side. The other day, as I knelt at his feet helping him put on his sandals, he reached out and stroked my hair. He might have been thinking of our dog, but I took it as a gesture of affection for me.

Caregivers, don’t turn away from these opportunities to touch your beloved or to let her/him touch you. The beloved’s caress will still thrill your heart when you let it. If there is old unresolved conflict that you can no longer discuss because of his/her aphasia, loving touch is the same as forgiveness. Touch replaces words; it can even become a form of prayer, shared bodies that become a shared spirit. If you are willing to forget convention, forget our culture’s views of the elderly and sick as disembodied, if you are willing, despite sorrow and exhaustion,  to be flesh to flesh and heart to heart again. 

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.

Blessings.