An Alzheimer’s Love Story

He became very sweet, this big man with a big ego who had been a noted architect; now he was smaller, childlike, and he’d follow people around the house. She’d smile at him, and then he’d ask her, “Will you marry me?”

She would pat his check and reply: “Darling, we are married!” His face would light up. “We’ve been married 35 years,” she’d say.

But the Alzheimer's disease had so progressed that he had no past, just the present – and here was this pretty woman beside him. Three or four times a month, he would say, “Will you marry me? I think we should get married.”

Where is the love when disease hijacks a person’s mind and personality?

She was lucky. Her husband didn’t become angry or violent. She was able to care for him at home until he died recently. Alzheimer’s affects people differently, and families respond to it differently.

It’s not easy, this letting go of someone you love and caring for that person at the same time. Illnesses that affect brain – strokes, dementias, mental disorders – tear relationship apart.

But recently, Sandra Day O’Connor, who stepped down from the US Supreme Court to care for her husband with Alzheimer’s, set a high standard for selfless love in an age of dementia.

Her husband, who lives in a long-term care facility, has fallen in love with another woman. And the family is happy that he is happy. No heartbreak over finding lipstick on his collar. The heartbreak is over the disease.

Where is the love when the rules of marriage are overturned by illness? When betrayal is a medical symptom and kindness is encouraging extramarital liaisons? When the relationship is long gone, but the spouse is still flesh and blood?

This is the Alzheimer's conundrum. A rich portrait of such a marriage under siege is the brilliant movie Away From Her, in which Fiona, played by Julie Christie, is losing her mind and forms an attachment with another man in the Alzheimer’s facility where they live.

He husband, Grant, played by Gordon Pinsent, struggles with his memories, his guilt and his dependency, as he experiences the gradual loss of his wife.

Like Sandra Day O’Connor, he accepts his spouse’s new relationship. Why? Because it will make her happy.

As Peter Reed, a behavioral scientist in charge of programmes at the Alzheimer’s Association, points out: “Most relatives want their loved ones to be happy.” Even when that happiness doesn’t include them.

Families living in illness have a message for the rest of us who still live behind the protective wall of good health. It’s about the primacy of love no matter what the capacity or circumstance.

“People do not lose their need for social connectedness. That may be a new friend, a new companion, a professional who is a care provider,” Reed continues. “It doesn’t go away.”

So it makes sense that a married man or woman would fall in love with someone else. Everything is in the moment.

In the movie, Fiona’s affair had none of the complexity of her marriage. Her intense longing for her fellow patient Aubrey, played by Michael Murphy, is primitive, more like a child’s attachment to a puppy.

There is also the comfort of someone who is sharing the same experience of illness. Even when diseases have a good prognosis, there is a bonding in the trenches of treatment.

“At a point in your illness, you only want to talk to people who are having chemotherapy,” says Jessie Gruman, author of AfterShock: What to Do When the Doctor Gives You – or Someone You Love – a Devastating Diagnosis.

“The person who is sick connects with people who are having the same experience rather than with the rescue caregiver.”

The supportive spouse is left out. Raw emotions boil up. The caregiver thinks: How come this person doesn’t love me anymore? Especially when I’m being so good to him or her? Not fair.

Where is the love when the relationship is not fair?

If the patient gets well again, the marriage recalibrates. Or maybe not, if past hurts and disappointments brought to the surface through the illness start to overwhelm the relationship. Illness intensifies whatever was there in the marriage.

Relationships aren’t fair. The well spouse also needs love. To get to that place where you are happy that your spouse has found someone else is a long journey.

To the extent that you are still involved, the initial hurt and betrayal have to be intellectualized, Gruman says. “It’s not the first place you go. It’s where you arrive after a lot of work.”

Getting there is hard, because suddenly there may be a flash of the former person with a familiar glance, a slow smile just like the first day you met.

Meanwhile, there is a summing up of the marriage. In the movie, Grant recalls his bride, calling her the spark of his life. But the marriage was not easy, and the ghosts of his past affairs dance in the background. There’s a whiff of payback in Fiona’s puppy love for her new companion. Grant, too, becomes involved with someone else. And yet, they care so much about each other.

It’s an Alzheimer’s love story.