At 86, my father had lived with a dementia diagnosis for almost two years. He was in excellent health otherwise, and lived on his own. He got twice-daily visits from a personal support worker, monthly housekeeping help and Monday-to-Friday meals-on-wheels service. I did his grocery shopping and laundry and managed his money.

Despite all the help he was getting, his health was deteriorating and his dementia was getting worse. Eventually, my sister and I came to a difficult conclusion. In consultation with our father’s doctors, we decided he couldn’t live on his own any longer.

Talking to your family about long-term care

That meant breaking the news to my father. Of all the hard conversations I’ve had in my life, this was probably the hardest. We had to sit down with him and have a heartbreaking talk about his diagnosis and prognosis several times. That’s because he would forget we’d talked. He also didn’t think there was anything wrong with him, other than old age.

We didn’t want to frighten him, but we respected him enough to tell him the truth. “Will I get better?” he would ask hopefully. “No, Daddy, you’ll get worse,” we would reply.

The Alzheimer Society of Canada has the following tips for talking to someone with dementia:

• Use what you know about the person. Focus on what they can do instead of what they can’t. Give choices when possible.
• Reduce distractions. Turn off the TV; make eye contact. Speak clearly, using short and simple sentences.
• Be flexible. Watch behaviour and body language, and ease up if they become distressed or uncomfortable. 
• Stay positive. Be aware of your own tone and body language. Connect instead of correct.

If my father had been in better health, we might have considered a retirement residence or assisted-living facility. I toured one nearby, just to see what it was like. It was deluxe and club-like, with a beauty salon, fitness centre, movie theatre and even a licensed bar. It had individual apartments with kitchenettes that residents could furnish with their own belongings. If they didn’t feel like cooking, they could eat in a communal dining room/restaurant. 

Varying care levels were available, but it wasn’t suitable for people with severe disabilities or more than mild dementia. For example, there were no security measures in place to keep people from wandering. Some retirement residences shared a campus with a nursing home. That way, when a resident’s health declined, they could just move across the parking lot.

Retirement residences aren’t subsidized by the province, so they cost considerably more than nursing homes. The demand is therefore lower, so there’s usually less delay in getting a room. You deal directly with the residence, rather than having to go through a government agency.

When I looked at nursing homes for my father, I considered these factors:

• Location. How far was it 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. It could also be a non-profit, run by a municipality or fraternal society, for example. The province sets the same fees for both. For-profit facilities must find ways to make a profit from those fees, which non-profit facilities don’t need to consider.
• Ratings and inspection reports. In Ontario, you can see the results of recent inspections of nursing homes through this Service Ontario link. Other provinces have similar sites. Word-of-mouth recommendations are also helpful: A friend’s mother was 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?

Depending on where you live, the wait for a subsidized, semi-private bed can be up to 10 years. Waiting lists are shorter (but still months long) for private rooms, because they’re not subsidized. It’s a dreadful state of affairs, with multiple causes:

People are living longer with more complex or debilitating medical conditions. They’re surviving things like cancer and stroke that might have killed them in the past. As a result, they’re surviving long enough to develop dementia, too.

Construction of new and renovation of older facilities has not kept up with the increasing demand for care.

More traditional caregivers (typically daughters and daughters-in-law) are working full-time and unable to care for aged parents.

Shared rooms are same-sex, so you have to wait for an appropriate bed. Because women typically live longer than men, more women than men live in nursing homes. That means fewer beds for men are available.

Hiring and keeping sufficient good, qualified staff is an ongoing problem at many facilities. This is true for both for-profit and non-profit facilities.

Usually, nursing home beds become available for one of three reasons:

1. A resident has died.

2. New beds have been added to the available stock (new or renovated buildings).

3. 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 government case manager). 
• Belonging to the cultural group catered to by a particular facility.
• Changing the preference from shared to private, which we did with my dad. The idea was he’d get preference when a semi-private room became available. (As it turned out, he was still in a private room when he died.)
• If a spouse is already living in a particular home

Looking ahead, you can help prepare for the cost of long-term care by purchasing long-term care insurance before you need it. To find out whether this is a good option for you, talk to an advisor.