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.