primarycaregiver2022

  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 ...

  Registered for emergency long-term care. In-home caregiving starts tonight because Mom is not strong enough to hold her weight and I am not strong enough to make up the difference.  We talk about Activities of Daily Living (ADL) as a measure of care recipient function. We need to talk about Activities of Daily Caregiving to measure the capacity and capability of family caregiving. We measure the ability of a care recipient to fend for themselves by assessing their ability to do basic tasks defined within Activities of Daily Living (ADL). Where the care recipient is unable to function according to assessment requirements, then someone else is going to be needed to make up the difference in functionality. Family caregivers perform to fill this functional gap. They make up the difference between what a care recipient can do, and where they need help.  We need to measure the capacity and capability for a family caregiver to fill the functional gap on behalf of their care re...

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

  It is hard to explain to those who have not experienced it. It doesn't need to be explained to those who have experienced it. It is high summer. Those who are unencumbered by caring for someone who cannot fend for themselves are out camping, swimming, surfing, sailing. Enjoying nature, companionship and camaraderie. Experiencing adventures that will form memories that will last a lifetime. Here we are caring for our frail elder. She is in good spirits, but her body is failing. We have been here before over the years. For every health crisis we have watched and waited, nursed, made phone calls, discussed amongst ourselves what to do. And each time, to date, our frail elder has recovered. Each time, she has recovered enough to keep going. Each time she has regained some strength, some mobility, some degree of freedom from pain. Each time, she has also lost some strength, some mobility, some freedom from pain. Each time, she has lost some capacity and capability to fend for herself....

  "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...

  It is hard to explain what it is like to be responsible for everything to keep our frail elders as well as can be expected. There are no hard and fast rules about what is the next right thing to do. There is a constant internal dialogue about what to do next, what is needed next, what is necessary, what is over doing it, what is intrusive, what is respectful, what is dignified, what is an emergency, what is normal, what does it mean to allow 'nature to take its course'.  The question that surfaces every moment that my attention is not occupied elsewhere is, "Did I do enough? Is there something I need to do now?" It is the enormity of the responsibility, many, many days, carried out alone or in isolation.  Other family members are traveling, working, socializing, crafting - occupied with their own pursuits and concerns. They are not thinking about what did Mom eat today? Does she need to toilet? Is she lonely or enjoying her solitude? Is she bored or enjoying the qui...

  My life with Mom is constrained to activities around home. It is ok for me to go for a 20 minute walk with the dog off the property and leave Mom in her chair or on her bed, but I start to feel uneasy for any longer period than that without knowing someone is looking in on her and making sure she has what she needs. In November, 2021, Mom was put on the palliative care registry and we organized ourselves to 'let nature take its course' on a six month timeline. Had we ever done this before? No. Did we know what to expect? No. We set aside our regular life routines of planning trips to visit grandchildren, or planning renovations, or planning to rescue a second dog, or install a new chicken coop. We put our lives on hold to organize and manage for Mom's needs, thinking this was a short term, acute situation that needed our full attention. At the end of the first six month period, we consulted with the Palliative Care nurse and extended the palliative care registration. Mom ...