Elaina Kaizer has high blood pressure and “wonky” blood sugar and takes medication for anxiety. For a woman who just a few years ago worked full-time as a supervisor and walked an hour a day, this is not how she envisioned her health when she reached her mid-forties.
As the primary caregiver for a parent with Alzheimer disease, however, Elaina did what most caregivers do: she put herself second to making sure her mother was safe and well and in her own home as long as possible. Actually, she likely put herself third because Elaina and her husband Brett have four children ranging in age from 12 to 27.
Her mother, Maude, who is now 85, was diagnosed with Alzheimer disease in the spring of 2010 after a car accident revealed that Maude had been experiencing blackouts. Looking back, Elaina admits she can see early signs of her mother’s impending disease.
“You notice some memory issues but you put it down to age. Once she was diagnosed, it all started adding up.”
The first sign was Maude’s reluctance to do big family dinners.
“It was getting to the point where she was saying she couldn’t do it,” recalls Elaina. “She was scared she was going to forget things. You put that down to normal memory loss, to age, but now, going to a support group and doing so much research, I realize now I could have picked up on it quite a number of years ago had I known what to look for. Because Mom was always such an avid baker and cook, that’s what I should have picked up on.”
Elaina and her family live right next door to Maude’s home in Beckwith so Maude was able to continue living in her home after the diagnosis but in creating that safe space for her mother, Elaina ended up making a big sacrifice. A year after Maude’s accident, Elaina was forced to quit her job as a supervisor with Basic Spirit in Pugwash after a terrifying incident highlighted Maude’s memory loss.
On days when her mother played Bingo in Pugwash, Elaina would pick her up at lunch and drop her off to visit with friends before going to Bingo. But one day, Maude forgot to follow the plan.
“I received a phone call that Maude was wandering,” Elaina remembers. “She had left the Lodge after visiting and seemed quite disoriented. I was sure she’d just gone to Bingo.”
But Maude had never shown up.
“No Mom anywhere. I couldn’t find her. I went back to work and she wasn’t there. My first thought was that she’d gone to the church. No. I was searching everywhere. I happened to see her walking by the hospital, up further. She hadn’t come down, she’d gone the other way. It’s such a panic.”
When Elaina picked her mother up, Maude didn’t remember what Bingo was.
“It was so shocking to me when she said ‘Bingo?’ because Bingo was every week for Mom. It was a common thing. It would be the same as her saying ‘Church? What’s that?’ It hit me like a tonne of bricks. My mother was getting so bad. How was I supposed to keep working and take care of her?”
So Elaina made a decision that could affect her and her family for many years.
“I went back to work for a little while but it got to the point where I couldn’t do it anymore. I left that job because it became too much,” she says. “I couldn’t have Mom at home and worry about where she was and what she was doing, if she would walk out into the woods and I’d come home from work and not be able to find her. So in May of 2011, I quit and became a full-time caregiver. I could have gone on stress leave but I didn’t know how long it was going to take so now I don’t have employment. And it’s very difficult to find another job.”
According to the Alzheimer Society of Canada’s website, family caregivers spent 444 million unpaid hours in 2011 looking after someone with dementia. That’s $11 billion in lost income and 227,760 lost full-time equivalent employees in the work force. Elaina is now part of those statistics.
“I wish the government would provide for families who are looking after [parent with Alzheimer] at home,” she says. “There’s just not enough support. If it hadn’t been for my husband and kids, I wouldn’t have had any breaks.”
The Alzheimer Society offers several support groups in Cumberland County for people with the disease and for those taking care of someone with the disease. Elaina attends a group in Tatamagouche and it has helped her cope in part by providing insight into the reality of living with Alzheimer disease.
“When I went to my support group meetings, they kept saying that my mother’s brain is broken and it can’t be repaired,” Elaina says. “You can repair a leg or an arm; my mother’s brain can’t be fixed. And you have to realize it’s broken and you have to adapt to her brokenness. She will never adapt to you again. There is nothing she can do; it’s what we have to accept. We have to adapt to her circumstances. I tried to make the good times good and get through the bad times.”
Keeping Maude at home worked, at least for Maude, until last April when there was a sudden and dramatic decline in her ability to take care of herself; even the doctor said it wasn’t regular Alzheimer decline, that something had happened to accelerate her symptoms. When Elaina found cat food in her mother’s fridge but her mother couldn’t remember if that’s what she’d eaten for for lunch, Elaina was forced to address the issue of getting Power of Attorney over her mother’s affairs and a meeting was scheduled to assess Maude’s mental competency.
“She declined so fast, it snuck up on us so fast and,” Elaina sighs. “My problem was if I didn’t acknowledge it, it wasn’t happening. It took me awhile to come to terms with the fact this is the way it is, it’s not going to change and we’ve got to do something. Well, by that time, she had taken such a decrease, she was declared mentally incompetent. She had a complete breakdown during the testing.”
By September, it was clear Elaina couldn’t keep her mother at home any longer.
“We’d find her wearing the same clothes for three or four days,” she explains. “It was becoming a safety issue, too, because she was getting out and going next door to her house even though it was locked and we told her not to go.”
The move to the assisted living quarters at Centennial Villa in Amherst was as bad as Elaina feared it would be – her mother accused her of betraying her – but after a month, Maude stopped asking when she was going home and now is settled in. In fact, an overnight visit at Christmas was so disruptive to Maude’s routine and emotional state that Elaina realizes her mother will never be home again.
With her mother getting the care she needs now and a new granddaughter born at the beginning of the month, Elaina is hoping she’ll be able to get her health, and her life, back on track.
“It’s not easy because you don’t know what your life is,” the 47-year-old grandmother admits. “A caregiver loses herself and becomes part of the person she’s caring for. You can’t reclaim that life. Your whole body and mind is immersed in it for so long, it’s like you become part of the disease.”
Photo supplied by Elaina Kaizer
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