Jennifer O’Connell: Loving someone with Alzheimer’s is a silent grief

The suitcases had not yet been unpacked when the call came. The baby was still jetlagged, and no one was sleeping, not even our new neighbours in the upscale San Francisco Bay Area apartment block that we were practising calling home.

Everything stopped that morning when the phone rang. The Caltrain lurching out of the station across the street. The smell of coffee beans. Swimming togs in the bath. Come home, they said. It’s time. The day darkened.

We repacked the suitcases. My sister-in-law met us at the airport and took the older children. Hurry, she urged. We drove too fast down the motorway to the bright, warm nursing home overlooking the sea, where music often played.

Ben's granddad is stretching his arms out. He has a speech bubble which says: 'I can't remember much, but I can remember how much I love you.'

She held on for us, as if she knew, though of course she didn't know. She hadn't known for a long time. The baby, who was born in Australia eight weeks before the move to California, was the only one of her 12 grandchildren she had not met. We took her out of her car seat and placed her gently on the sheets. The change in environment made her cry. If her grandmother had been able to, she would have given out to us for that. "Leave that poor child alone," we could all hear her say.

But we got away with it, and for a brief moment, they were together, surrounded by my mother-in-law’s six adult children and her husband. One at the beginning of her journey, the other very close to the end. When the baby cried, she moved in response. The circle closed. A few days later, she died.

Her name was Kay, and she was loved.

All diseases are dehumanising: they strip us back to our raw selves. But Alzheimer's eventually strips the raw self away too, and leaves only the disease. The language we use to talk about it becomes the lexicon of battles and setbacks and onslaughts and retrenchments. It is the language of missed opportunities, of groundbreaking treatments that lurch briefly into view, before vanishing. It is the vocabulary of science journals: magnets to manipulate the brain; marijuana treatments; experiments with stem cells and diabetes drugs; research roadblocks; fresh starts and failed clinical trials. It is the focus shifting from cure to prevention; it is gentle scolding about diet and education levels and staying engaged with your community. It is endless, terrifying data. One in three: the number of us who will have experienced it if we reach the age of 85. The number of people in Ireland who currently have it: 55,000. The number who will have it 30 years from now: 150,000. The number of us scared witless at the prospect: 100 per cent.

When she had lost the ability to remember her grandchildren's names, art transcended the need for words, and bound them together

What it is, most of all, is overwhelming. And in all the fear and hype, the humanity gets lost. The disease, by its nature, means that only rarely do patients get to share their stories. Families don’t get the opportunity much either. When you love someone with Alzheimer’s, it is a silent grief. They are gone, but you haven’t yet said a final goodbye. People don’t offer condolences or ask you how you’re doing.

Loved-one vanished

Families of Alzheimer’s patients, and families whose relatives have disappeared, probably understand some of what the other is going through in that sense. Their loved ones have either vanished somewhere inside themselves, or they have vanished somewhere out in the world, but they are equally unreachable. They are both here and gone; neither here, nor properly gone.

Even amid the slow, painful loss, there are good moments, moments when glimmers of the person emerge from the shrouds of the disease.

I have one memory, in particular, of Kay. It is a sunny day. She is sitting in the back garden, surrounded by children, heads bent in silent concentration. They are furiously colouring in. When she had lost the ability to remember her grandchildren’s names, art transcended the need for words, and bound them together.

That sense of transcendence is captured by an exhibition that opened this week, called ARTzheimer’s. The artists’ ages range from 7 to 74 and their work is a collection of powerful statements about love, loss, isolation, identity and memory. None of them has Alzheimer’s themselves, but they each have experience of it.

The curator, Eimear Farrell, said she simply wants to give people – children in particular – permission to talk about a disease that affects almost every Irish family, but is still bound up in so much fear and stigma. She wants to get away from the data, and normalise how we talk about it.

There are strong, beautiful and evocative works in the collection, but the one that stopped me in my tracks is by an 11-year-old, Ben Rafter. In the bright, happy drawing, Ben's granddad is stretching his arms out. He has a speech bubble which says: "I can't remember much, but I can remember how much I love you."

Her name was Kay, and she was loved.

ARTzheimer’s is now open at the Civic Theatre in Tallaght