Once you hit what many call “the enduring stage,” you will have to help more with Activities of Daily Living, or ADLs, your loved one will experience more behavior and health issues, and you are going to need breaks and extra support.
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‘It Just Drains You of Energy’
“The later stages are very difficult,” says Debby Blyth, of Toronto, who was the main support for both her parents as her mother struggled with dementia. “I was screaming a lot inside my head.”
Among the things you can expect are visual problems and falls on the part of the Alzheimer’s sufferer, angry outbursts particularly at sundown, night wandering, appetite decline, urinary tract infections from neglecting to drink or forgetting how to swallow, incontinence and other distressing “responsive behaviors.”
(For a very thorough, candid document on handling responsive behaviors, complete with examples and strategies, download the Shifting Focus guide from BrainXchange.ca.)
Blyth remembers one horrendous evening when her mother fell while sitting on the toilet. Blyth, who had worked all day, had just left her parents’ house when her dad called. She immediately headed back and found her mother lying in the bathtub, smeared with blood and body fluids. “She was a mess,” she says. “It just drains you of energy.”
Unlike other diseases, Alzheimer’s can go on for years – and that’s not sustainable for the caregiver.
“It’s a marathon, not a sprint,” says Barbara Larkin, a Burnaby, B.C., social worker, who was a joint caregiver for her elderly mother until she died in February. As dementia progresses, she says, you’ll need the right supports in place.
Kim Angelakis, director of health and wellness for We Care Health Services, a national health care agency based in Toronto, says caregivers can lose themselves in the process.
One Statistics Canada study found 55 percent of informal caregivers felt worried or anxious, 28 percent felt somewhat stressed by the demands placed on them, and 19 percent said caregiving was affecting their physical and emotional health.
The home care vise
The first call Blyth made was to her local Community Care Access Centre (CCAC). Every province in Canada has some kind of CCAC service. These provincially run and funded organizations assess the kind of care needed to keep ill or mentally and physically disabled people living in their homes.
They can provide support to help with day-to-day activities, nursing care, occupational and physiotherapy, social workers for emotional support and a range of other services, as well as offering advice on community support services (such as Meals on Wheels and dining programs).
You usually don’t require need a doctor’s referral. Instead, a case worker visits your home to assess your needs. In Blyth’s case, the CCAC care coordinator pointed out tripping hazards and suggested putting railings in the bathroom to keep her parents safe. They also provided a few hours of homecare a week to help with bathing.Occupation therapists: How these star performers keep those living with Alzheimer’s safer, and better functioning, at home. Read Home, Safe Home
Provincial governments usually use private providers of homecare services to deliver care.
Blyth, like many caregivers, got less help than she needed. In fact, the Canadian Homecare Association notes that demand for homecare services is outpacing funding right across the country. The number of people getting homecare grew by 55 percent between 2008 and 2011 to about 1.4 million people. And yet 2010 statistics from the Canadian Institute for Health Information show that, of the $3,957 per capita spent on public healthcare, $159 (or 4 percent) is spent on homecare.
Practically, what that means is that there may be a waiting list, for service, and the government will cap the number of hours of care, says Angelakis. Case workers offer support based on needs and, in some provinces, your own ability to pay for care. “Across Canada there’s a lot of variability in the models as far as the total hour allocation,” says Angelakis.
“The problem with services like the CCAC is that they tend to be very medical model-oriented,” says Mary Schulz, director of education for the Alzheimer Society of Canada (ASC). “They’re set up to address primarily a physical problem – maybe a person is having trouble bathing or walking or making meals or doing their dressings.”
Often someone in the middle stages of AD or another form of dementia doesn’t have a lot of problems with those things, says Shulz. “The system is not all that supportive of cognitive problems as opposed to physical problems.”
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