In May 1993 my mother was in the last stage of Alzheimer’s disease. She needed to be fed by hand, so I timed my visits to the nursing home where she then lived so that I could feed her lunch. This is what I wrote after one visit. I am sharing it with readers with the hope they may see that there are moments of grace even in end-stage dementia.
When I feed her, she will sometimes open her mouth when the fork gets near. Other times she needs to be prompted by a slight touch on her lips. I feed her in a recliner because she can no longer hold her head up or sit up straight; if she sits in a wheelchair or ordinary chair, I need to lift her head for every bite. That annoys her and wearies me; dead weight, heads are amazingly heavy. But a recliner in the upright position has enough backward tilt that, though her head is still down, she’s not completely bent over and I can reach her mouth.
As it is, she will often doze off between bites. Then I lift her forehead just a bit and she awakens enough to open her mouth again. Or, if she has fallen asleep in the middle of a mouthful, gently tilting her head will start her chewing again.
While I eat my lunch and feed her hers, I try to remember to talk to her—on the chance that something may get through. But she doesn’t turn toward me, and she doesn’t see me. This still and unresponsive figure is hard to reconcile with the nervous, scurrying pleaser my mother used to be; but the long slender fingers, the long legs, and the curly silver hair are all unmistakably hers.
When my mother is finished eating, I wash her face, place a pillow behind her neck and recline the chair all the way. Even when she is supine, her head stays forward until, by massaging her neck and shoulders, I can ease it back onto the pillow. The strain makes her squeeze her eyes shut, but in a moment she begins to relax. Then she may fall asleep.
But if she opens her eyes again, there’s a chance that she’ll see me now that she’s horizontal. I hope for it, but I’ve learned not to expect it.
It’s as though thick clouds fill my mother’s mind, and they shift day by day, hour by hour. Sometimes when the heavy clouds part, all I can see in her eyes is a blank haze, and she focuses on nothing. Other times there’s turbulence and she stares at me, troubled and barely able to be comforted by a loving touch but reaching out to hold on to me.
Yet there are times when a patch of clear sky appears. Then she smiles when she sees me, though it’s doubtful she knows who I am. And when I kiss her, she tries to kiss me back. She makes contented sounds when I hug her or stroke her cheek, and she eagerly leans her head on my hand.
At those times, her face is as I never saw it before: uncharacteristically open, without the worry that usually furrowed her brow and the tentativeness that checked her affections. As I stroke her and talk to her, she looks at me with uncomplicated love.
She is suspended in a moment of pure pleasure in being loved, like a baby gazing into her mother’s face. But she has not returned to infancy. She hasn’t a baby’s future. She has lost all that a baby has to gain, most of what gives dignity to a life. And she hasn’t a baby’s clean slate: as she declines, her slate is marked forever with signs that she once was more.
But she has also lost some burdens: her need to please, her fear of being herself, her fear of conflict, her hesitancy to touch, her need to hide her feelings and tailor her responses to what she thought you wanted to hear; in short, her whole strategy to be safe that kept her at a distance and left me not knowing how to be close to her.
All that is gone. Though vulnerable now in every sense, she no longer knows vulnerability; and her elaborate defenses have disappeared.
So, though I see before me the ruin of my mother, I also see a part of her that only now has a chance to be. That we can, in those brief moments, love each other unselfconsciously brings me joy. I grieve for both of us that it took such devastation to free her, and me. And that it came so late, almost too late.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.