CAREGIVING
What happens when disease strikes your ex?
June 10, 2011
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Susan Pigg
LIVING REPORTER
She speaks in a language now that only he understands — a mumbled jumble of whispers caused by the Alzheimer’s ravaging her brain.
“We have our own code, don’t we pet?” Allan Hamilton says in his thick Scottish accent, leaning into a hospital bed to kiss the woman who divorced him 22 years ago. “Nobody else can understand it — not even our daughter.”
For the last five months, Allan, 74, has spent every day at the long-term care facility where he reluctantly moved his 77-year-old ex-wife, Annie, who is known as Nan, last December.
Before that, Allan cared for the mother of his four children in a Brampton seniors’ apartment where they each had their own rooms and he would often be startled in the middle of the night to find her standing, confused, at the foot of his bed.
He was the one police alerted when Nan was found face down in a park after slipping out of the apartment in the middle of the night.
“After the Alzheimer’s, I did everything — cooking, washing diapers ... It was a long day. I was shocked.
“But this is what you do. Who else would take it on?”
Allan’s situation is not as unusual as it seems. A perfect storm of escalating Alzheimer’s rates, years-long wait lists for long-term care and a lack of affordable home care means even ex-partners are being pressed into service, if nothing else to take the load off their grown children. “My daughter had a high-profile job, her husband is a fireman. They had two teenagers and they were on the go all the time” when Nan was diagnosed with breast cancer and Alzheimer’s in 2005, says Allan.
Their other three children live in the U.K., where Allan met Nan at a dance in Glasgow at the age of 18. They were married 32 years before Nan filed for divorce and moved to Canada.
Allan, a tradesman who was on the road 11 months a year, says Nan was enraged by his decision to sell their hotel, which she had run almost single-handedly while raising four kids. Their daughter June says her mother was worn out, and with her kids grown she was free to live the life she wanted. “It’s as if their roles have been reversed. My dad has had to become the caregiver, which he never was before. It’s made him less selfish,” says June, who lives nearby and seems bemused by her parents’ relationship.
“I think the Alzheimer’s has almost helped her mind jump over the acrimonious decade (before the marriage ended). I often wonder if she sees him as the man he is now or when they first got married.”
Danielle Farrell, an outreach worker with the Peel Alzheimer Society, has seen a number of ex-partners step into the fray. In some cases, they’ve moved on to second marriages and their new wife or husband also helps out.
“Someone with moderate to late-stage dementia needs 24-hour supervision. It still surprises me that people have been divorced or separated for years, and yet they’re willing to provide the care.”
This is just one example of what may lie down the road for many families, given that there are now 180,000 Ontarians with dementia and that number is expected to grow 40 per cent by 2020.
Dramatic societal changes are having a major impact on our aging population. The 2009 Ontario Ministry of Health and Long-Term Care report, “Caring About Caregivers,” warned that traditional support networks are disappearing for the elderly and aging baby boomers owing to the decline in nuclear families.
These days, there are three times as many single-person households as homes with five people or more, and married people no longer make up the majority of the population. Combine all this with the high divorce rate, as well as the fact that 42.7 per cent of Canadian households now have no children, and it raises a critical question: who is going to take care of the growing number of people who don’t have the usual supports — partners or children — when chronic diseases set in with age? People with Alzheimer’s, for instance, can live an average of eight to 12 years after being diagnosed.
Claire Forster, 45, knew what she was taking on when she fell in love with Kathy Lockwood, 45, and agreed to move from Hong Kong to Toronto back in 2006 to build a life together — a life that included Lockwood’s much older ex-husband, Ray, who was suffering from dementia.
Ray was so sick by the time his wife of 10 years fell in love with Forster, he thought the women were just good friends.
Forster decided to leave her job not long after moving to Toronto which turned out to be a blessing in disguise. By then Ray, who was in a seniors' facility, was getting increasingly unable to care for himself and Claire gradually became his primary caregiver.
By the time he died almost three years later, on New Year’s Eve, 2009, at the age of 81, he had Alzheimer’s, diabetes, colon, lung and bone cancer.
“Without Claire I have no idea how I would have done this,” says Lockwood, who, along with her busy career as a senior vice-president for a major Canadian company, found the demands overwhelming. “I never asked her. She just took it on.”
Both women believe caring for Ray brought them closer in ways they never could have imagined. They plan to marry July 28.
“I actually developed quite a bond with Ray and discovered I have this caregiving streak,” says Forster. “I am extremely uncomfortable when people say, ‘Why would you do that for your partner’s ex?’
“But who wouldn’t do it? We’re just lucky we were financially able to do this” — give up one income to care for Ray — “and it makes me so angry that so many people cannot.”
Allan Hamilton talks lovingly of his ex-wife as she was during their marriage — social, stoic, an avid knitter, a wonderful dancer.
In some ways, he knows he’s fortunate. While some people with Alzheimer’s become unbearably nasty, unpredictable and dangerous to themselves, the disease has softened her somehow.
It’s been heartbreaking for Allan to watch Nan’s unrelenting decline — the cancer that took her breast, the mini strokes that stole her voice, the recent fall that broke her hip and sent her to hospital for a painful replacement.
Now, he clings to her slivers of recognition. She wept a few weeks ago when she saw a photo of her beloved black lab Kelly, who died 22 years ago.
Allan has been so consumed by Nan’s escalating illness that he’s working on a website, Baby Boomer Community Centre, that he hopes to launch soon as a resource for others like himself struggling to help a loved one with Alzheimer’s.
As Nan lies in a hospital bed, recovering from the latest catastrophe — internal bleeding — Allan holds her hand and acknowledges he wasn’t always the most devoted husband.
But those were very different times, he says. “I like the life I’ve lived. I have no regrets.”
Then he smiles at Nan. “She’s taken over my life. Maybe it’s payback time.”
spigg@thestar.ca