Newsletter: Developing an app to optimize respite care coordination for palliative care families

Imagine that you are an only child whose mother lives alone several hours away. She is receiving palliative care services for her terminal cancer diagnosis, and she’s determined to die at home. You long to be with her during this time. Since you’re permitted to work remotely, you move in with her. However, you never knew how exhausting 24/7 care is when caring for a dying loved one.

You didn’t realize how much work hygiene care takes, for someone who can barely move. You didn’t realize that you’ll become snippy with each other, at the end of long days when you’re both tired, sad, and in pain. You didn’t realize that your mother would experience respiratory distress, and you wouldn’t know what to do – yet. You’re learning, but there is no one else learning with you, and you know you can’t keep your promise for your mother to die at home much longer without help.

One night, after the millionth scare of the week where you wonder, “Is this it?” You break down crying. You need a break. You need help, right now. But who can you call? Who can you and your mother trust to provide this intensive, last-minute care?

***

Read the rest of the McGill Council on Palliative Care newsletter article showcasing how our research will address situations like this, here.