Talking to a friend - 2024 11 08

 

I was talking to a friend who is in the middle of her family caregiving work. We were talking about how little is known about the work of running a long-term care facility from our homes so that our family members can live with their families.

My friend is operating a long-term care bed in her home for her partner. He suffered a stroke in 2017 that resulted in acquired brain injury. He cannot fend for himself. She tried leaving him in a care facility after his rehabilitation program ended because it was clear he was going to need support. It was heartbreaking for her to hear him on the phone asking, "Why can't I come home?", "When am I coming home?".

She brought him home and has been taking care of him ever since.

Her caregiving story is different from mine. Her partner is not physically frail. He is impaired cognitively, but still able to manage some part of his activities of daily living. The better care my friend takes of him, the longer he is going to live.

When my friend has tried to access external supports to help her with the work of caregiving, the work of accessing those resources has overwhelmed her and she has given up, circling back to doing it herself. 

My friend has no time to tell her story, to bring her lived experience to the attention of health policy makers, decision makers, administrators and providers. She is exhausted and every day is the hardest work she has ever done. 

My friend is operating a long-term care bed that requires staffing 24/7 every day of the week. That bed is situated in a residential home that requires annual, seasonal, monthly, weekly and daily upkeep. My friend is responsible for all the shopping, meal preparation, meal service and kitchen duties. My friend is responsible for all the laundry, housekeeping, repairs and improvements needed to keep this operation running as smoothly as she can manage. My friend is responsible for making doctor and therapy appointments, transportation to and from these appointments, taking notes and instructions delivered during these appointments. 

My friend has been operating this long-term care bed for seven years. Her caregiving work easily exceeds 500 hours a month. Even if my friend was to put her partner on the emergency long-term care list, it would be three to six months before a bed might become available. I don't know how my friend would survive the heartbreak of having to put her partner in an institution. My friend will continue to do this work because she cannot see any other option that she, and her partner, can live with.

In 2024 the BC government funded a ten-year program to invest $3.2 billion to create 5,354 long-term care beds. This breaks down to approximately $600,000 cost per bed. The cost for operating a long-term care bed was reported to be $75,000 per year in 2017 dollars. We don't yet have the operating cost per year per bed for 2024. 

How difficult would it be to identify family caregivers operating long-term care beds in their homes and flowing funding and resources to those beds to stabilize that existing infrastructure? I am sure it would be a fraction of the cost of institutionalized care, even if adequate, sustainable funding was made available. I'm also sure that many families would consider operating their own long-term care beds for family members instead of putting them into an institution if there was adequate, sustainable resources flowing to those operations.