My widowed father is 87 and has lived with dementia for almost three years. He’s in excellent health otherwise, and lives by himself in a small apartment just outside Toronto. He gets twice-daily visits from a personal support worker, monthly housekeeping help and Monday-to-Friday meals-on-wheels service. I do his grocery shopping and laundry and manage his money.
Despite all the help he’s getting, my sister and I came to the difficult conclusion last year – fully supported by my father’s doctors – that he couldn’t live on his own any longer. Since neither of us can look after him in our own homes and he doesn’t have the means to live in a retirement residence or hire a live-in companion, that meant moving him into a long-term care facility, a.k.a. a nursing home.
Talking to your family about long-term care
If my father’s illness was purely physical – like diabetes or a heart condition – it would have been difficult enough to discuss his situation with him. He would have been able to understand why we thought a nursing home might be the best place for him to live, though, and while he wouldn’t have been thrilled about it, we could probably have obtained his informed consent.
It’s a very different story for someone with dementia. While he usually seems quite rational in conversation, my father’s memory is severely impaired. We’ve had to sit down with him and have a heartbreaking talk about his diagnosis and prognosis several times, because he forgets, and because he doesn’t think there’s anything wrong with him other than old age.
Because nursing home beds are in such short supply, my father had to be assessed by a provincial government gatekeeper agency – called a Local Health Integration Network (LHIN) in Ontario – to qualify for placement.* He was deemed incompetent, so he didn’t have to agree to be placed, which is normally required. Then I completed a form that listed up to five facilities, in order of preference. My dad had to get confirmation from his doctor that he needs long-term care, and as long as he’s waiting for a bed, we have to get the application and the doctor’s form reviewed and redone annually.
Nursing home facilities and costs
When my father’s condition began to deteriorate, I started looking into the options for his care, and spent a good chunk of my vacation last year touring nursing homes in Ontario. Here’s what I’ve found out:
While medical care received in a long-term care facility is covered in Ontario by provincial government health insurance, residents must pay for their rooms, meals and incidentals. The weekly and monthly room and board charges are capped by the province, according to the type of room: private, semi-private or basic (three or four beds). The newer facilities tend to have only private or semi-private rooms, and in the absence of multi-bed rooms, semi-private rooms cost the same as basic.
Rates typically increase once a year. As of July 2018, the maximum rates in Ontario were:
- $1,848.73 per month for a basic room
- $2,228.65 per month for a semi-private room
- $2,640.78 per month for a private room
If my father’s income was extremely low, I could apply on his behalf for an Ontario government subsidy of as much as the full cost of a basic room, but I would have to reapply each year.
All the rooms I saw on my nursing home tours had an en suite two-piece bathroom, but communal shower/tub rooms. No cooking is allowed in the rooms; all meals are served in dining halls of varying sizes. In some older facilities, semi-private rooms feature two beds separated by a curtain (like a hospital room). In others, semi-private rooms are two singles connected by a shared two-piece bathroom. (Picture an hourglass with the bathroom in the narrow part.)
Some long-term care facilities cater to people of a particular cultural background, offering meals and activities based in that culture, plus staff who speak that language. This is particularly helpful for people with limited English skills or with dementia, who may have lost what English they had.
Retirement residence or nursing home: What’s the difference?
If my father was in somewhat better health, a retirement residence or assisted-living residence might be a possibility. The one I toured (just to see what it was like) is very deluxe and club-like, with an on-site beauty salon, fitness centre, movie theatre and even a licensed bar. It has individual apartments with kitchenettes, but also serves meals in communal dining rooms. Varying levels of care are available on a sliding cost scale, but it isn’t suitable for people with severe disabilities or more than mild dementia. For example, there are no security measures in place to keep people from wandering. Some retirement residences share a campus with a nursing home, so when a resident’s health declines, he or she can just move across the parking lot.
Retirement residences aren’t subsidized by the province, and cost more than nursing homes. As an example, the smallest apartment (a 440-square foot studio) in the building I toured starts at $3,200 per month (with no care provided). Because of the cost, the demand is lower, so there’s usually little or no delay in getting a room. You deal directly with the residence, rather than having to go through a LHIN.
What should you consider when choosing a nursing home?
When I was choosing the five facilities to put on my father’s application, these were some of the factors I considered:
- Distance from my home and my sister’s home
- For-profit or non-profit? A long-term care facility may be owned and operated for profit (often as part of a chain) or as a non-profit, by a municipality or fraternal society, for example. The fees for both are the same, as set by the province. For-profit facilities must find ways to make a profit from those fees, such as by cutting costs, which non-profit facilities don’t need to consider.
- Ratings and inspection reports. You can see the results of recent inspections of Ontario nursing homes through this Service Ontario link. Word-of-mouth recommendations are also helpful: A friend’s mother is in the nursing home at the top of my list.
- Impressions of the facility. Was it bright and clean? Did the residents look alert and well-cared-for? Were the staff members friendly and did they seem genuinely interested and caring? Read more: Finding the right long-term care facility.
Why are the waiting lists for long-term care so long?
Depending on where you are, waiting lists for subsidized beds can be anywhere from two to 10 years. Waiting lists are shorter (but still months long) for private rooms, because they’re not subsidized. If my father’s condition suddenly worsened – a stroke, a fall, a sudden progression of his dementia – he would go to the head of the waiting list as being “in crisis.” That means he would absolutely need to move into care right away – but in Mississauga, Ontario, where my dad lives, there’s even a months-long wait for a “crisis” bed. If he was to have a health emergency, he would either have to be admitted to hospital and occupy a critical-care bed there until a long-term care bed became available, or I would have to quit my job to look after him. It’s a dreadful state of affairs, with multiple causes:
- People are living longer with more complex or debilitating medical conditions, and surviving things like cancer and stroke that might have killed them in the past, to live long enough to develop dementia.
- Construction of new and renovation of older facilities has not kept up with the increasing numbers of people in need of long-term care.
- More traditional caregivers (typically daughters and daughters-in-law) are working full-time and unable to care for aged parents.
- Semi-private and basic rooms are same-sex, so you have to wait until an appropriate bed becomes available. Because women typically live longer than men, there are more women than men in nursing homes, so fewer beds for men become available.
- Hiring and keeping sufficient good, qualified staff is an ongoing problem at many facilities, both for-profit and non-profit.
How can you move up on the waiting list for long-term care?
Usually, nursing home beds become available for one of three reasons:
- A resident has died.
- New beds have been added to the available stock (new or renovated buildings).
- People accept beds in other facilities, taking their names off the other waiting lists.
A facility with a high turnover may move through its waiting list quickly, but you need to question why the turnover is so high – why are so many residents dying? Perhaps that’s not where you want your parent to live.
Other ways to move up the list:
- A medical crisis (as deemed by the LHIN case manager)
- Belonging to the cultural group catered to by a particular facility
- Changing the preference from basic/semi-private to private. We’ve done this with my dad, with the understanding that he’ll be given preference when a semi-private room becomes available in the facility he’ll be in.
- If a spouse is already living in a particular home