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First Person

Overnight, he forgot she was his wife – and it took Sandra Gould far too long to find out the medical reason.

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I wanted to take my husband on one more trip. He had Alzheimer's, but he loved to travel. And while I'd been told that Alzheimer's patients shouldn't be taken out of familiar surroundings, we wouldn't be going to Europe, South America or Mexico. They were places that he had enjoyed, but now the customs and languages would have been confusing for him. We'd just go to Florida, where we could benefit from the warm weather. I could take care of him there just as well as at home, I reasoned.

Our trip down was difficult with flight delays, which meant that we arrived exhausted at our rental condo at 2 a.m. As we were getting into bed, he asked, "But where's Sandra?"

I was surprised, but assumed that he would know me in the morning after a good night's sleep. He didn't. He would never know me again. Ron recognized my face, liked me and seemed to enjoy my company, but I was not his wife.

At first, this memory loss was bewildering, interesting and sometimes even amusing. One day during our getaway. we were out walking. Ron kept looking at me and finally asked, "Did you go to Acadia [University, where he had attended]?" No.

"Were you ever married?" I replied yes and that I still was. He informed me that he had never been married and when I pointed to his wedding ring, he did agree that the numbers engraved on it were a wedding date.

We remained in Florida for three weeks, but the reports of their father's behaviour were upsetting for our daughters. "Bring him home," the eldest suggested, thinking that would solve the problem. So we left a week earlier than planned.

When we got home, Ron recognized our daughters, relatives and friends – but not me. He often spoke about his wife to me and I was thankful that his comments were never derogatory: "You have a white car, so does my wife." "My wife's a good driver, too." "You amaze me that you know all of Sandra's friends."

Several times when we attended gatherings, he chatted with acquaintances and when people asked where I was, Ron sometimes said that I was attending a conference. He did not seem to be disturbed by my absence.

On our anniversary, one daughter called to express good wishes and later I found him sitting on a chair in the driveway. He explained that he was waiting for his wife so he could take her out to dinner. When I suggested that he and I go out, he was appalled. Ron sat there for two hours, then gave up and forgot about it.

Sometimes, I went through the process of trying to explain the situation to friends and acquaintances, but it was so complicated and resulted in looks of amazement and perhaps disbelief that I eventually gave up.

How did I feel? Besides the bewilderment, frustration and grief, there was always the nagging feeling that I was responsible in some way. I knew that wasn't the case, but I wondered if others speculated about that. It would have helped if I had known that he was definitely not the only one with those bizarre symptoms. That knowledge finally came to me, but in a round-about way.

One morning, CBC Radio had a program on Alzheimer's disease. I called in and spoke with a doctor from Halifax and he said yes, that he had had patients with these symptoms, but unfortunately, he did not give the phenomenon a name. It would have given me such a sense of relief if he had.

I know now that my husband had Capgras delusion, the irrational belief that a familiar person has been replaced with an exact double. French psychiatrist Joseph Capgras first described this disorder in 1923. It seems that normal face processing starts with the visual cortex at the back of the brain. Two different pathways branch from that point. In some Alzheimer's patients, the pathways are disrupted. That is a simplified explanation of a complicated process that is beyond my ability to understand. What I do understand is that the sufferer still recognizes the face (almost always someone with whom the patient has a close emotional history), but has lost the feeling that the appearance of that face formerly initiated.

How did I find out about this syndrome? Not from the doctor on the radio, not from our geriatrician, but from a kind woman who had personal knowledge of Capgras delusion and phoned the radio station to leave a message for me. I was so grateful and found more information online, which I printed out and carried in my purse for a couple of years, often showing the papers to those who asked about his condition.

Why does it bring comfort to know that the misery you are living with has been identified and that others are experiencing it? I cannot answer that, but know that it is true. It somehow gives affirmation to the situation and makes it more bearable.

Ron died in April, 2017, after suffering all the indignities that Alzheimer's has to offer. The mystery of his syndrome had long been replaced by the need to cope with his wandering, his daily phone calls to his long-deceased mother, his inability to recognize other family members, his loss of language, his inability to walk and, finally, muscular rigidity. In the end, Capgras was the least of our worries, but it would have been helpful to have known its name six years earlier.

One can conjure up all kinds of guilt-inducing explanations as to why you are the one who's been forgotten, but that is self destructive. I am thankful to the woman who phoned the radio station. She knew that and took the time to make a phone call that brought a bit of reassurance to a bewildered wife and family.

Sandra Gould lives in Riverview, N.B.