These video clips are demonstrations of the concept for arts-based narrative inquiry as a documentary process capturing contemporaneous notes depicting the lived experience of family caregiving. Mom was up early this morning - check timecode moment 3:15 Preparing for Palliative Care Nurse visit - check timecode 220 Consequences - link to John in Halifax (caregiving wife w/ dementia) - check timecode 450
"Our Father, who art in heaven..." I woke from a deep sleep at 445 am to the sound of Mom's voice weakly reciting the Lord's Prayer from her bed. I immediately thought she was on her way to find her resting place with Grandpa and Grandma Jones. Lately she had been reporting her conversations with them to me, telling me that they, "...were happy with their lives and what they had left behind." In the last two days Mom had suffered from difficulty breathing, a bout of bowel incontinence and a swollen knee too painful to bear weight. I had been giving her extra puffs on the inhaler, a simple diet, and elevating her sore knee. I padded into her room and found her in some distress, in tears. I couldn't figure out exactly what the issue was, it was more like generalized grief rather than specific sadness or pain. I sat on the side of her bed and held her hands, wondering what to do. Was she at the end of her life? Do I call my siblings and tell them to get...
On Tuesday, September 24, at 8:52 am, we made the call to our long-term care case manager and asked for Mom to be put on the emergency long-term care waitlist. It was clear to us that we could no longer manage Mom's care needs on our own. Her needs had exceeded our capacity (strength) and our capability (managing toileting needs). By 10 am we had confirmation that 24 hour care would be put in place for Mom starting that evening. This was a relief, and also a logistical challenge. Our heritage house has flour floors - the basement, the main floor, the second floor and the attic. In 2021 we moved Mom into our basement suite and set up arrangements for a live-in caregiver. That live-in caregiver ended up being me at least 75% of the time. Gradually, over the years, I setup extra beds, work stations and art / music studios on each floor so that I I always had a place to work no matter who was staying with Mom, or if we had extra family visiting. I spent the majority of my time ...
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