Long-Term Care…Now What?

Mom was adamant that she did not want to live with either my sister or me. Her independence was too important. When her evolving health issues led to several visits to the hospital and it became clear that she was having difficulty living on her own, we contacted her local Home and Community Care Support Services. Mom was assigned a Care Coordinator, assessed and deemed acceptable for long-term care. 

Going this route was not a decision that mom made lightly. She was still relatively young, still cognitively healthy. But her physical and mental health were in significant decline. She was–we were–in crisis. 

We were told that the waiting list for long-term care beds was years long (about 40,000 people on the wait-list), but we needed to start visiting homes so we could confirm our top three preferred homes. There was no guarantee that mom would get admission to one of these homes, but visiting would give us an idea of what to expect. We didn’t know anything about any of the homes in the city where mom lived and there were too many to visit, so we started with online research. We narrowed the list down to six homes based on location, google reviews, wait times and performance and public inspections reports.

We made our appointments to visit and created a list of questions (I wish we had known about the Concerned Friends checklist for choosing a LTC home). We tried hard to tamp down the existing bias we had about long-term care homes because we literally had no first hand experience. Everything we knew was from news items about the challenges residents and staff were experiencing at many homes in Ontario.

The individuals giving the tours were like upbeat sales reps, working hard to sell us on the idea of their location. The irony of course was the long waiting lists and the fact that we had limited power to choose. We were shown the common areas, shared and private rooms. We heard about the activities calendars and weekly menus. We observed staff interacting with residents and we often saw groups of residents in their wheelchairs, unengaged. 

In the end, in addition to our original research, we finalized our list of three homes based on how much room mom would have in the shared (semi-private) room, the lighting (natural and artificial), how it smelled, how clean it was, and how engaged the staff appeared. 

Mom was only able to visit one home and that became our top choice.

By the time we finished this research and gave our list to the Care Coordinator, mom was so far in decline that she needed to be reassessed and was put on the crisis list. We were told that we could now apply for as many homes as we wanted and that a crisis placement generally took about three months. We decided to stick with the three homes we had identified and crossed our fingers.

Exactly twenty-eight days after mom was placed on the crisis list, we got the call that there was a bed available at our second choice home. We would normally have had 24 hours to confirm acceptance of the placement, but it was Friday evening of a long weekend. We were given until Monday morning.

Looking back now, we definitely were not prepared for how quickly we received that placement call.

Once you accept the placement, you typically move in within three to five days. We accepted on Monday and by Friday of the same week, we were moving mom into her shared room.

It was a culture shock for mom (and us). In just one week, she transitioned from the home (and life) she had known for years, into a tiny new space with a roommate. There were so many things she wanted to take with her, but they were either no longer needed in her new life or there simply was not enough space. We pushed forward and tried to make mom’s new home feel like home.

Recognizing that every family could have a different experience, these were our key takeaways from our experience with mom:

• Ensure your loved one has a voice in the decision making, wherever they end up will be their new home for the foreseeable future. 
• Engage Community Care Support Services as soon as possible, they are a good source of support for all resources that are available for your loved one.
• Keep your Care Coordinator in the loop regarding any changes or concerns with your loved ones care needs.
• Ensure that you do your research about LTC homes in your city–read the most recent inspection reports for the homes you are considering, look at reviews.
• Make the time to visit homes in person and try to imagine your loved one sleeping, eating, living there. How does it smell? Is it well lit? Does it look clean? Do the residents look happy, engaged?
• During your visits, ask questions like these on Concerned Friends’ checklist for choosing a long-term care home.
• Once you start the LTC process, especially if your loved one is on a crisis list, ensure that you have their legal, financial and other important decisions in order.
• Ensure you have a list of everything your loved one will need for their move.
• Have a plan for what will be done with any items that are not being taken to the long-term care home.
• Remember, this will be a very big, emotional change for your loved one (and you). Make sure you (and they) are well supported.

Finally, I wish we had known about Concerned Friends and their free Wayfinding Program that connects knowledgeable volunteers with individuals who have questions or need support and assistance in navigating all aspects of long-term care. This is a resource that can be used at any point in the process (thinking about LTC, applying, already in LTC). 

We definitely would have taken advantage of this resource and I hope you will too. In addition please check out this page on LTC Resources that you may find helpful in your current journey. 

Contact a Wayfinding Volunteer @GTA local: 416-489-0146
Toll free: 855-489-0146
Email: info@concernedfriends.ca

–Tymbi Gonsalves, Concerned Friends Volunteer

If you have a story about your experience with Long-Term Care that you’d like to share, please submit to us at info@concernedfriends.ca