Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part five of an eight part series.

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.

Here’s how the system works; and how to make it work better, for you.

‘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.”

A snapshot of government-provided care

How many paid hours of care you can expect from the government differs dramatically depending on where you live and even who assesses your needs. Here’s an idea of what to expect:

In Alberta, “clients with a dementia are typically considered ‘long term supportive’ clients,” says Cheryl Knight, executive director of community and seniors’ health at Alberta Health Services.

“These clients can get a maximum of 10 hours per week of direct professional service, 35 hours per week of personal support service and 26 hours per week of respite services.” If your needs exceed that ceiling, “there’s an opportunity to have the services considered for extraordinary funding.”

In Ontario, says Audrey Miller, owner of geriatric care manager Elder Caring Inc.  “the maximum I’ve seen is 56 hours and that was for palliative care.” If you need help bathing, you might get one to two hours a week, enabling you to bathe twice, she says.

In British Columbia, by contrast, you could get a maximum of 28 hours of care a week, according to Peter Silin, owner of Diamond Geriatrics in Vancouver. But that would be rare, he says. “Generally, the maximum you’ll get is two hours a day.”

A social worker by training, Silin is one of the new breed of geriatric care managers, like Audrey Miller, who offer services geared to the overworked caregiver. He has accompanied elderly people to doctor’s appointments, intervened with the local health authority to get them more in-home care and watched over them in hospitals and nursing homes.

He start withs a care management assessment to identify issues, such as night wandering. Then he works inside and outside the public health care system to put supports in place that enable people to stay in their homes as long as possible. As Silin told one busy real estate agent recently: “I’ll be the caregiver so you can be the son.”

To find a care manager, check out the Senior Service Directory listings.

Consider hiring a private patient navigator. For more on how they work, read Gift of Guidance: The Role of Patient Care Navigators.

How to get extra help

It is possible to negotiate for more hours of government-paid care, says  Silin. He suggests documenting all the things you do as a caregiver on a day-to-day basis, from bathing to feeding and notifying the CCAC when the person you’re caring for loses abilities and has new symptoms.

It helps to know how to phrase your request for more care, adds Miller. She suggests saying something like “my parent is at risk of a fall – I think she needs help with bathing.” The government is well aware that it is far more expensive to provide hospital care for a broken hip, than to provide care at home, she says. “Be assertive. Ask what else you can get – what else is available? The squeaky wheel gets the grease.”

Blyth suggests making sure you’re part of the process. “It’s really important to be there when the case worker is doing an assessment,” she says. “I think if family members are involved, they feel as if they’re a little more under the microscope and they’re more willing to deal.”

Case workers are also a good source of info about other services you may be eligible for, she points out. “Because my dad was a veteran, we had a little more help. We could have someone come in to clean the house, cut the grass, clean the eavestroughs and remove the snow.”

Other people may have access to resources through workplace benefits or pension plans, a private insurer, or Aboriginal Affairs, says Angelakis.

Finally, don’t be shy about asking for help from family, friends, church groups and others. Angelakis suggests making a list of the things you are currently doing and how much time is required to meet that need on a sign-up sheet.

Supplement with private caregivers

Ultimately, you may have to supplement government-provided care with private care. Private home care can set you back $20 to $30 an hour or so for basic personal support with meals, housework and bathing, for example, and $40 to $70 per hour for nursing care. Often there’s a two-hour minimum.

To keep costs down, Angelakis suggests piggybacking two tasks – for instance, if your dad needs help cleaning the house, arrange to have a personal support worker (PSW) arrive in time to remind him to take his medication.

And, she says, “make sure you’re getting the right level of care from the right provider.” Care from a registered nurse is expensive and unnecessary for routine tasks like dressing changes or giving medications that can be carried out by a (cheaper) registered practical nurse. And even an RPN’s expertise isn’t required for doing light housework.

At We Care, and most other providers of home care, says Angelakis, a case worker will work with you to put a “care plan” in place that effectively allocates public and private sources of care. While there’s no national organization that lists home care providers, you can check Home Care Ontario  for connections to homecare providers in Ontario and Alberta. (For other provinces search the name of your community or province along with “home care.”)