primarycaregiver2022

  View from our front porch - 2024 10 20 - 910 am 2024 10 20 - Jenny Notes 838 am A quiet, raining morning. Adele is curled up on a sheepskin. I have lit the gas fireplace. We have been pelted by an atmospheric river this weekend. Today will be another downpour. No wind right now. Sodden leaves blanket the soaked ground. The sidestreet has been turned into a waterway sloughing off water that has not been collected in overload, clogged storm drains. This is truly my favourite weather.   There is no traffic. If we have a choice, we stay home.   I can feel myself slowly adjusting to this new era of my life, an era where my Mom is no longer in danger, and is no longer a threat to the safety and security of anyone else.   It is a special kind of work to live with a family member disabled by mental illness. I have lived my life to date hobbled by an invisible, disabling post traumatic stress disorder acquired from childhood and early adult, also adult, experiences. I did n...

  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...