A life-saving link
Sandra MacCharles was at her wit's end. She was caring for her 88-year-old mother, who had Alzheimer's disease. Although MacCharles had to be present during her mother's visits to the doctor to speak on her behalf, the doctor's office wouldn't discuss her mother's case with her.
"When my doctor's receptionist said she couldn't tell me anything about my mother's condition because it was confidential, I broke down on the phone," says MacCharles. "I said, 'I'm 61 years old. I can no longer look after her. I can't lift her any more. What am I supposed to do?'"
MacCharles's mother had lived with her for 24 years. Until two years ago, she drove her own car and did all of the house cleaning and ironing while MacCharles was at work. She accompanied her daughter shopping and out to dinner. "She was a lot of fun. People at the Pickering Town Centre would comment on how young she looked and that we kept her young. She was like a friend."
But then cataracts, the onset of skin cancer, incontinence, Alzheimer's and heart failure changed all that. Although MacCharles wasn't told about the diagnosis of Alzheimer's, she certainly was aware of her mother's increasingly bizarre behaviour.
"This was the hardest decision I ever had to make but I just couldn't look after her any more," says MacCharles, who retired in October of last year. "I had to shower her and dress her and be there at all times. I was confined to the house 24 hours a day. You feel like a prisoner in your own home."
MacCharles says she found herself breaking down all the time, unable to sleep.
"She was the best mother in the world. That's why I want her to be in a place that's fresh and clean and new - and near me."
When things reached a crisis point, MacCharles and her husband found themselves driving past Community Nursing Home Pickering and deciding, on the spur of the moment, to go in. There they found the home's resident social worker, Satya Sukhai.
"Satya was the light at the end of the tunnel," MacCharles says with evident relief. "Now I know about the process, about the CCACs (Community Care Access Centres, government-established agencies that serve as gatekeepers to a host of health-care services in Ontario). Without her, I wouldn't know where to start. What do you do? Where do you turn? It's unreal."
MacCharles has since contacted the Durham Access Care Centre and made an appointment with a case worker who will assess her mother. She has chosen a spanking-new facility in Ajax that opened in September. As she describes the beautiful amenities, she can hardly contain her excitement. Her voice sounds energized as she looks forward to the next chapter in her - and her mother's -life.
"I'm at lot more at ease now," she says, her voice relaxed, "because I now know what I am doing."
Help is available for everyone at local CCACs, which help people who are sick, elderly or physically disabled connect with the services they need, such as Meals on Wheels, home care, transportation, day programs and admission to long-term care facilities. They offer advice on what to look for and what questions to ask when selecting a facility. They also assess individual requirements and eligibility as set out by the Ministry of Health.
The key service, says Georgina White, policy adviser for the Ontario Association of CCACs, is case management. The case manager's job is to determine what someone needs and develop a service plan to meet those needs. The CCAC then arranges the services, the information and the referrals.
"They take a holistic look at what the person needs," she says - which means they will consider everything from cultural and religious affiliations to specialized levels of care when selecting a long-term care facility for someone. Linking up with a CCAC is part of a process that might begin some time before the actual search for a long-term care facility is undertaken. Often, families contact the CCAC in their area in search of some home-care assistance to give them a bit of a break.
"We are the best-kept secret," says White. "No effort is being made to make the public aware."
Nancy Wisken, administrator of Community Nursing Home Pickering, says sometimes people, like MacCharles and her husband, are so desperate they come in off the street. "They don't know where to start. If they are coming in cold, it's because they do not have access to the system.
"That is the biggest nightmare - how to make people aware of what is available. It can be very traumatic to make that choice to put Mom or Dad in care and they often think, 'If I just had a break for a couple of weeks, I could keep going a bit longer.' Respite care can make all the difference in the world. It gives people a break and can make the transition to a nursing home easier.
"So when they come through the door, we point them in the right direction. We give them the information they need to find a home that meets their needs.
"Once you tap into the right source, doors open. Sometimes it's as simple as knowing the phone number (of your local CCAC)."
Geri Davenport, who at 74 cared for her 87-year-old husband, Tony, who has had Alzheimer's disease for 10 years, agrees with Wisken. "There is a lot of help out there. But you have to get in touch with the right people."
And that appears for many to be the stumbling block. Who are the right people? Davenport got in touch with the Alzheimer's Society, which she learned about in a television documentary. It offered workshops and support groups and put her in touch with an adult day-care program run by Community Care in Ajax.
The organization also arranged several hours of home care for her, including overnight supervision for her husband, who began to wander during the night and would sometimes fall. Eventually, they connected her with Durham Access to Care (their local CCAC), which helped her find a nursing home with an Alzheimer's wing for her husband in July.
Sometimes, Wisken says, it's the family doctor who makes the referral to a CCAC. For others, the need to go into long-term care comes out of the blue.
"I had never looked into long-term care. No way," says Bob Ferguson, at 86 a robust man without a line in his face.
The former Toronto Transit Commission supervisor could easily be mistaken for early 60s. "We were adamant. We thought we could look after ourselves."
But in the fall of 1999, Ferguson developed skin cancer and a few months later, his wife, Grace, began having trouble with her feet. She collapsed and was admitted to hospital. That's when the early signs of Alzheimer's were detected. It was the family doctor who said: "I think it's time you started to consider a retirement home."
"It's not what I wanted to hear," says Ferguson. "But we realized we were having problems and would have a hard time in the future."
The couple's two children did all the legwork, looking at 14 places. And they found the perfect solution - Erin Mills Lodge in Mississauga, a retirement home where the Fergusons could live together in their own suite, but with a nursing-home wing should the condition of either deteriorate.
Retirement homes are private, non-subsidized facilities that offer various levels of care, while long-term care facilities - there are about 500 in the province - are subsidized, licensed and regulated by the Ministry of Health and Long Term Care and provide a more intensive level of care. You need a referral from a CCAC to be admitted to a long-term care facility but anyone can independently opt for a retirement home - although the CCAC will provide information on retirement homes as well. Of course, Comfortlife.ca also lists many private retirement homes.
The Fergusons initially moved into a suite in the retirement home. But two years later, when Grace's condition rapidly deteriorated after she broke her hip, the discharge planners at the hospital put Ferguson in touch with a CCAC, which was able to ensure that Grace not be moved to a different facility. She was able to stay at Erin Mills, transferring into the long-term care wing (for which she had to be referred, like anyone else) while Bob moved into a single suite in the retirement-home wing.
The Fergusons still spend part of each day together, meeting for afternoon tea, watching TV, taking part in social programs and visiting Grace's sister, who is also at Erin Mills.
Ferguson still drives, going to church on Sundays and to a shopping plaza. He looks after the flowers at Erin Mills and is active in the choir.
"I wouldn't change this for the world," Ferguson says, proudly showing a visitor around. "We have everything here. Sometimes, I think I am over enthusiastic about living here - but I don't think so."