With Alzheimer's Disease, the Losses Come Sooner

Elizabeth Uppman

Recent news reports tell the awkward last chapter of the love story between former Supreme Court justice Sandra Day O’Connor and her husband, John O’Connor. He was diagnosed with Alzheimer’s disease 17 years ago. The family recently placed him in a long-term care facility, where he has fallen in love with a woman who lives at the same facility. The O’Connors’ son, Scott, says his father acts like “a teenager in love… sitting on the porch swing holding hands.”

Alzheimer’s experts say these kinds of attachments are to be expected, and that the patient is not to blame. Kathleen Waldron, interim director of the ASU West School of Aging and Lifespan Development, says “A person who has dementia does not live in the same world the rest of us live in, and their reality may be completely different. You cannot take anything a person does with dementia personally.”

Wise words, but not easy to live by.

My grandmother has had Alzheimer’s for almost as long as John O’Connor. When I visit her at the nursing home, I wheel her down to the quiet room and sit facing her. I rub lotion into her hands, ask her how her day is. When nobody else is around, I sing. Grandma looks at me with a puzzled expression. Her eyes are curious but blank. She was once a modest person, shy and self-effacing. Now she stares straight at me, and I stare back. She doesn’t mind the kind of directness that once would have been unthinkable. She doesn’t hide anything because she has nothing left to hide.

It must be difficult for Sandra Day O’Connor to see her husband holding hands with another woman, just as it’s difficult for me to withstand the directness of my grandmother’s stare. This is not the way the person I love is supposed to behave. It’s sad – devastating, really – the things a disease can take away from us, things we thought were absolute. It makes you wonder, grimly, where the bottom line is, where is hidden that last and most precious thing that makes us ourselves, and whether that thing can be taken away, too.

Every once in a while my grandmother gives me what I’m waiting for: a smile. She smiles the way she always did, shruggingly, in a “well, here we are again” kind of way. She used to smile this way at the mistakes we kids made, the jelly on the carpet, the gum in the doll’s hair. Well, here we are again, her smile would say, and then she would hunker down and fix it.

I wish I could do the same for her – I wish I could hunker down and fix the Alzheimer’s that is erasing her story, line by line.

Elizabeth Uppman