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Long-term care strives to be home-away-from-home for aging residents

To say that Geraldine Nicholas and Pamella Barney have lived fiercely independent lives is an understatement. As residents of Toronto long-term care centres (formerly known as nursing homes) on opposite sides of the city, they are among a rising number of aging people who now require the services of this type of supportive environment.

Leaving their own homes to live in a long-term care centre may not be what Geraldine, 78, a former secretary/treasurer for a custom brokerage firm, or Pamella, 71, a retired casting director in TV and film, would have hoped for in their senior years. But for each, the move has resulted in improved health, safety and a sense of community.

With people living longer than ever before, many will spend nearly a third of their lives as senior citizens. “We have become very good at extending lives but we need to do more than that. We need to make that life worth living,” says Dr. James Edney, Medical Director for Toronto Rehab’s complex continuing care program and Lakeside Long-Term Care Centre, a new partnership facility of Toronto Rehab and Extendicare. “We focus on treating people as individuals, providing them with as much autonomy and decision-making power as possible. For most people, moving into a long-term care centre reflects a loss of health and independence. We do what we can to restore that person’s sense that they are still in charge of their lives.”

Increasing demand for services by an aging population has resulted in the recent funding of an additional 20,000 long-term care beds in long-term care centres and homes for the aged in Ontario. Most are up and running, with the remainder to open in the coming year. The long-term care sector is also undergoing reforms to ensure that quality of care meets provincial standards.

Paul McCue, Geraldine’s brother, believes that the move to Extendicare’s Rouge Valley Long-Term Care Centre was the right choice for his sister. “She is where she needs to be, and it’s obvious in the difference in her health and attitude toward life. My sister is happy now. Geraldine was really missing her social life.”

“At Rouge Valley, she’s getting the meals and care she needs, and she is safe,” adds Paul’s wife, Marilyn. “She has her own room, and she’s out mixing and mingling.”

Geraldine, who adapted quickly to the move to long-term care, had struggled for years in the community with the gradual effects of dementia. She went from being an active person to closing herself off from others and living in one room of her apartment.

Over time, Geraldine’s ability to feed and care for herself diminished. “We had her assessed and we tried home care, but she would send them away,” Paul McCue recalls. Lack of memory, confusion and several falls put Geraldine in the hospital. Testing showed that she could no longer live independently.

Geraldine had made a prior decision and informed her brother that she wanted to live on her own for as long as she could. “She wanted her independence, even if it cost her, even if it meant the odd hurt, the lack of certain comforts or being alone,” says Paul McCue. “Knowing that was her attitude made it very difficult for us.”

Guilt and a feeling that they are going against the wishes of a loved one can be a traumatic experience for family members who are left to make a placement decision when a person is no longer able to decide for themselves.

Staying focused on positive outcomes when grappling with a decision about long-term care can help make the situation less difficult, advises Paul Asselin, a social worker with Toronto Rehab’s stroke service. “Going into a long-term care centre is a decision that really has to be made by the individual. If he or she is not capable, then the decision falls to a substitute decision maker, usually a family member. It’s a decision that has to be faced with strength, dignity and grace, and that’s not always easy.”

The social worker suggests that individuals and families make an informed decision by taking into account information from their health care team. “We try to outline the person’s care needs and options. But it’s up to the individual and family to decide how best to meet those care needs. From my perspective, the two big issues are safety and quality of life.”

In the community, home care can be limited and private services, costly. When adult family members are raising their own families and working, caring for an elderly parent or relative often is too demanding.

“Long-term care has things to offer that home sometimes does not, including a recreational and social environment,” says Paul Asselin. “Elderly people in the community can become isolated, withdrawn, housebound, lonely and depressed. There’s a myth that home is the best place to be. That’s true if you are well and able to get around. But if you are not, home can become a dysfunctional environment.”

Concern over some of these issues is what led Pamella Barney to decide in 2002 to relocate to a long-term care setting. Following two strokes, Pamella’s movement eventually improved along with her speech, but she was experiencing problems with balance and memory. “When you can’t remember if it’s breakfast or lunch you are cooking, that’s not good.”

Pamella had been living with her mother, Margaret, who was moving to Norwood Long-Term Care Facility in west-end Toronto. Pamella decided to go with her. “It wasn’t a difficult decision for me to make,” she says. “With mom coming in, I thought it was better for me to be here with her than alone in the apartment where I could possibly hurt myself. My girls said they were going to worry about me being on my own.”

At Norwood, Pamella makes daily visits to see Margaret. Now 96, “mother sometimes doesn’t even know me.” Pamella has the unusual dual role of long-term care resident and family caregiver for her mother.

The transition to life in a long-term care facility was “hard at first,” Pamella says. “I’m a very independent person. But there’s no stress involved here—I’m not worrying about what I’m going to have for supper or how I’m going to get the groceries.”

With her entertainment background, Pamella is Norwood’s resident movie critic and enjoys the variety of performers who visit the centre. A former actress, she also does readings for residents and staff.

“I was in the big world of show biz,” grins Pamella, who ran Central Casting Agency. “This is a much smaller world. But I can’t do what I used to do by a long shot. When you’ve had a stroke, or you are aging and have a disability that disrupts your life, you have to really analyze the situation and decide if you think you need help.”

For further information about long-term care placement and accommodation costs, contact your local Community Care Access Centre (CCAC). The Toronto CCAC is at 416-506-9888.