Karen Cumming thought her 98-year-old mother, Verna, would live out her days in an assisted living facility in Grimsby.

But when Verna lost her ability to walk in October 2018, Cumming and her sister Patricia Milne, found themselves in a "crisis," scrambling to find a long-term care facility.

Their fight to navigate the province's long-term care system led the sisters to write The Indispensable Survival Guide to Ontario's Long-Term Care System, a brief book about their journey, what they learned, and what others in the same position should do.

Cumming, a long-time Hamilton journalist and health advocate, spoke to CBC News about the system and how she hopes to create a community for families seeking long-term care.

Q: What problems will people face trying to navigate the long-term health care system?

A: This was the most challenging system I've ever tried to navigate. It's unacceptable that we have a long-term care system that does this to people. It wasn't until after our mother passed away that I began to discover these resources, buried under layers of red tape on government websites so deep the average person would never find them.

A lot of them are very useful but no one had ever told me they existed — and even if they had told me, no one was offering to help me access them.

For example, there is a way for you to access a separate page for each long-term care facility in Ontario with useful information like how many beds are in the facility, how many of them are private, semi-private or basic and how many people are on the waiting list, which is a critical piece of information.

If you have put a certain facility on your list of preferred facilities and you don't know how many people are on the waiting list, some of them have more than 800 people. It could be years before you're offered a bed even if you're on the crisis list.

You can access documents online that go into the inspections carried out and complaints against the long-term care facilities. In the book, we help guide you to them.

In the system, no one is ever going to guide you to them because let's be honest, they don't want people to be researching it.

Q: What is one issue that sticks out in your mind when you reflect on the process?

One thing we did notice that really concerned us was the call bells — the buttons mom or dad press when they need help, need to go to the washroom, need water, whatever it is — would ring incessantly. It's no exaggeration to say sometimes they ring for more than an hour, not because people don't care but because they're so short-staffed they literally don't have manpower to answer all the bells.

That is a huge red flag. It's something I don't think any of us would say is acceptable. The premier and others in charge of the long-term care system might spend a few nights in an Ontario facility and see these things with their own eyes and realize our mothers and fathers deserve much better than this.

This impacts almost every single human being in this province and this country. It's up to us to start making some noise.

Q: What advice do you have for families dealing with this issue right now?

A: The number one piece of advice is this — it is important to be proactive and prepared. Don't put it off until tomorrow, don't say to yourself, "oh, we'll take care of that next month," because next month becomes the month after that and in the end, sometimes it just doesn't get done.

Once you're in the system, it's hard to do your homework because you're so busy just trying to keep your head above water.

Also, realize you're not alone. There's a self-care component to this book where we give people advice in terms of looking after yourself. Love yourself, make sure you get adequate rest and sleep, make sure you eat well and you hold on to your sense of humour.

Be the best possible version of yourself for your mother and father because they need that.

Be organized and write everything down. We bought a spiral bound notebook that we used and every day would write down every conversation with healthcare providers, government bureaucrats and every question we had.

Sometimes, memory is unreliable at best and it is a godsend to have documentation of this you can refer to and use.

You should also learn how to ask great questions and to not be intimidated by authority. You have every right to ask questions about the healthcare providers who are doing what they can to help your parents.

We have to understand that system is not going to change, so we have to. We need to educate ourselves, we need to adapt to it and we need to learn what we need to know to navigate it smoothly and with minimal stress.

This interview has been edited for length and clarity.