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Caregiver at the home where my dad resides

“When I started reading There’s No Place Like Home, I couldn’t stop until I got to the end. I’m living the same experience.”
― Caregiver at the home where my dad resides

Long Way from Home

Long way from home
Book is insightful guide and a touching memoir of helping an aging parent
(reprinted with permission)
BY BRUCE WARDTHE OTTAWA CITIZEN JUNE 3, 2010

Three years ago, Lise Cloutier-Steele placed her then 82-year-old father in an Ottawa nursing home. It was time.
Her father had been given a diagnosis of Alzheimer’s disease and was suffering from several other ailments, including a bladder infection. Ever the dutiful daughter, Cloutier-Steele did her homework on long-term care facilities.
“Compared with others, this home had a wonderful reputation for its outstanding medical and spiritual care,” she writes in There’s No Place Like Home ($15.95, www.ottawacaregiver.com). Her book, available at Books on Beechwood and Collected Works on Wellington Street, is a sobering, insightful guide to the day-to-day reality of being an advocate for a parent with dementia living in a long-term care facility.
It’s also a moving portrait of one woman’s battle to maintain her father’s dignity as his mental capacity diminishes.
Despite the home’s solid reputation, Cloutier-Steele learned she has to be vigilant to make sure the staff consistently meets her father’s basic needs, including toileting.
During a recent visit, she encountered her father coming out of the dining room.
“His catheter bag was dragging on the floor,” she said in an interview. “When it’s that full, it hasn’t been emptied all morning.”
Cloutier-Steele was upset but far from shocked.
“It took 18 months and an official complaint to the Ministry of Health to stop the smell of urine in his room. And 18 months later, they can’t empty his bag.”
As she writes in the book, “I never imagined myself cleaning my father’s false teeth and cutting his toenails … but I am the only one he’s got to oversee all his personal hygiene and grooming care, which falls under the category of basic care that no one else at the home seems to have the time to provide in a consistent manner.
“I don’t even want to think about what he would look or smell like if I didn’t cover all the bases for him.”
On another recent visit, Cloutier-Steele noticed that her father’s catheter bag had been incorrectly fastened at his ankle.
“The straps were on so tight they were cutting into his skin. You can’t pull the tubing from the penis down to the ankle because it causes pain. Dad doesn’t notice because he has dementia.”
The facility is not named in the book. Cloutier-Steele’s primary aim in writing the book was to share personal experiences, and to provide practical information for those in the process of finding a nursing home for a parent or loved one — or preparing for the day when they move to a nursing home.
Cloutier-Steele notes that, according to Statistics Canada, Ontario has “the second worst long-term care staffing levels in the country.” In her experience, staff shortages result in a gap between care levels and assessed needs.
Most of the full-time health care aides at her father’s facility are “great at their job,” she writes. “But the 15-to-one resident-to-aide ratio (or greater depending on the floor) prevents them from meeting the needs of each resident during a shift,” and from living up to the home’s commitment to provide exceptional care.
Understaffing has a deleterious effect on residents, she says.
“No way you can get to 15 people and do a good job in a 7.5-hour shift. It’s impossible. This is the consequence of understaffing and it has a major effect on them. People are left to lie in their beds and stare at the wall; that’s it.”
The spotty monitoring of residents places an extra burden on caregivers like Cloutier-Steele.
“It makes for added pressure. It makes you feel you should be there all the time. You can’t leave them there and do nothing; you have to check on them all the time.”
Interacting with staff and management at the home requires a will of iron and the skills of a diplomat. “You have to be prepared to negotiate,” says Cloutier-Steele. “You have to enter into negotiations for every little thing. You have to keep going back, all the time. It’s very hard.”
Ironically, Cloutier-Steele is grateful at times for her father’s dementia.
“Luckily for me, he has no short-term memory. When something happens he doesn’t remember it five minutes later. It’s a huge blessing to me.
“Part of the reason why homes across the city can carry on the way they do is the people are ill and they don’t notice stuff. If the room’s floor is filthy and the windows are never washed, they don’t see it.”
There’s a Boomers’ mantra that says you should enjoy retirement to the max. Spend all your cash on travel and good times while you can. Why leave anything for the taxman, right?
Cloutier-Steele’s book cautions against that sort of thinking. It serves as a warning of what lies ahead, should you find yourself in a publicly funded nursing home without supplementary health insurance or the money to pay for additional private care.
“If my parents had prepared and made provisions for this, I would have been able to hire someone to look in on him all the time, which is the best solution. Make sure you can hire private care in addition because private care will make up for everything the home can’t do. And the home can’t do much.”
The book also provides several excellent checklists for those looking for a nursing home for a parent or loved one. Seemingly, she covers every aspect of life in a nursing home, from staff friendliness to seating arrangements in the dining room, and how to recognize symptoms of caregiver burnout you may experience.
The book includes a series of questions that should be asked about the home’s policies regarding residents who are incontinent. In some homes, heavily soiled pads are left on the floor to be picked up later.
“If this is the case at the home you select, you will often be greeted by the smell of urine or fecal matter as soon as you get off the elevator on the floor you are visiting.”
Cloutier-Steele wrote the book partly as a “reality check,” she says.
“In doing this book, I wanted to spare others a lot of what I went through. I want people to avoid the shock and prepare themselves.”
― © Copyright (c) The Ottawa Citizen

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