More affordable and appropriate care options are needed for the growing number of younger people with Alzheimer disease, says a Red Deer man, whose wife got sick at age 55.
Larry Quintilio’s whole world was up-ended when his formerly active and efficient spouse, June, began drifting into confusion.
First he had to move his work home to become a caregiver to her. But after just a year, his wife’s deteriorating condition required round-the-clock vigilance, so he sold his electrical contracting business and retired early.
It was the start of a long, painful and frustrating journey that ended on June 3, when June died at age 68, after suffering from Alzheimer’s for more than 13 years. Before losing her mental faculties, she had raised two children, hiked the West Coast Trail, and had been a highly organized perfectionist. The genial June had helped co-ordinate dozens of school tours during the 1986 Canada Olympics in Calgary and later worked as an education co-ordinator at Red Deer hospital, plotting nurse training and other schedules.
The first sign of something wrong came in 2001, when June began losing track of whether she had paid household bills. Quintilio knew this wasn’t normal behaviour for his spouse. But it took several more years to get a medical diagnosis because his wife didn’t want to accept what was happening and refused to see a doctor.
One of the biggest difficulties, as June’s disease progressed, was she never lost confidence in her own abilities, said Quintilio.
This meant her exasperation would mount as various obstacles — such as the supposedly screwed up utility bills — were thrown into her path.
“We are used to dealing with people who are rational and logical,” he added, but people suffering from Alzheimer’s and other forms of dementia have lost their sense of logic.
Although June was on two drugs to slow the progress of the disease, her mental condition gradually worsened. As she lost touch with reality, she would point to external sources for her confusion.
Quintilio recalled his wife blaming his decision to prevent her from her driving for all the problems she was experiencing.
She would get so agitated in the evenings she couldn’t rest. “We would have to go for walks at three in the morning. I would tell her ‘I’m taking a billy club and bear spray with me,’ because she worried somebody would (attack) us, and she felt safe with me,” recalled the local man, who gets emotional thinking of June’s last years.
“We would walk through the night. After 20 minutes in the fresh air, I would get her home and she could fall asleep.”
When the time came for Quintilio to investigate long-term care facilities for June, he found very few affordable or appropriate options. Private facilities were expensive (up to $6,000 a month), while public facilities (in the $1,500-$2,000 range) were usually geared for the very old. Wards were often not locked, so people with dementia could wander away.
June still had a lot of energy to expend and would have had little to do all day in a seniors’ home, he said.
Because his wife’s strong personality made her hard to handle, she finally got a spot at Centennial Hospital in Ponoka. Quintilio had to travel an hour round-trip every day to see her, but he praised hospital staff for the excellent care his wife received during her last 3 1/2 years in this secure facility. June kept busy with recreational options, such as woodworking.
But many other people with Alzheimer’s won’t get a spot in Centennial Hospital, he said, since the facility is not meant for long-term care patients.
Quintilio knows a 48-year-old local woman with children at home who must now also care for a husband with Alzheimer disease. She lost an income since her spouse can no longer work, and unlike a widow, does not get insurance money to pay off the mortgage or help pay for his care.
“If you’re a younger person, you don’t have the means. This ruins you financially, and there is no government provision.”
Studies have shown dementia will grow to “epidemic” proportions. In 20 years, the number of people with the condition is expected to at least double from the 500,000 Canadians who currently have dementia.
The Early Onset Alberta group met at Red Deer’s Sheraton Hotel on Saturday to discuss how to spread awareness of the need for more long-term care options and community services.
Quintilio urges area residents to write to their MLAs asking for more Alzheimer support.
He also encourages anyone affected by the disease to contact the Alberta Alzheimer Society and local support groups to learn to cope.