Family Caregiver Investigation

  Yesterday I started the task of collecting and cataloguing the photos, videos and notes that document the lived experience of looking after Mom. In yesterday's work session I got about halfway through a collection of over 900 media files.  My takeaways from going through the files so far - and I just happened to start with files from early 2021, when we were finishing the bathroom reno.  First, I noticed how many times Nahanni came up to visit to spend time with Mom. Those were not easy trips for her to make, approximately 6 hours each way including crossing the US / Canada border. I had quite a few photos and videos she shared with me from her visits. Second, I noticed how many times Mom had family visiting. The fact was that we had to make up some of Mom's caregiving support from unpaid family because I could not do it alone. So Mom had visits with her children, and spent time with them, more than any time in the 40 years she was in mental health group housing. Her fr...

   2025 03 20 - Family Caregiving - Data Processing Today I started working on compiling data from our time looking after Mom, a fragile elder with complex needs. She lived in mental health group housing for 40 years because her mental illness disability made it so that she could not care for herself. Mom's mental disability had stablized with medication. She was aging out of the group housing system. We were told she would be moved into a long term care facility. We considered that option, but we were concerned that COVID restrictions would limit our access to visit Mom. We decided to bring her home rather than get her re-housed in a long term care facility. All Mom wanted to do was to move back home with her kids. I'm going through emails from one account, starting from the earliest reference to bringing Mom home. An email dated 2019 08 02 shows a thread of discussion precipitated by management change at Mom's group home. There were many staff being laid off and we were c...

  At present I have been on the verge of overwhelm and depression sorting out what goes where and how we are going to re-organize our functional household now that Mom is gone. It feels like I have been moving, sorting and re-organizing all year. Just trying to establish a new normal.  It is a shock to lose Mom. No matter how hard I tried to be prepared for her leave-taking, I only found out after how unprepared I was.  There are several categories of work that need attention after family caregiving ends.  Death Administration - this is the work of closing accounts, sending notifications to government, funeral arrangements, will execution, processing personal effects, communicating with family and friends. We were as well prepared as we could be - we had made arrangements for Mom's will, her financial administration and her medical administration. She didn't have much, her entire worldly possessions fit in her bedroom and beside her reclining chair. Caregiving Admin...

  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...

  Yesterday I attended a meeting of our local community group, 'Age Against the Machine'. The purpose of this group is to build family, friend, neighbourhood and community resilience to support each other when we can no longer fend for ourselves. I shared what I have learned these past three years of operating a palliative care, then a long term-care, and then a hospice care bed in my home so that our Mom could spend her final years and days at home with her family. The absence of cost accountability for family caregiving in legislative, policy and institutional strategy is alarming. It places an unaccounted burden of care on families who strive to make up the functional difference between what their family member can do for themselves and what they can no longer manage. The work of family caregiving has remained invisible to research priorities, and health provider initiatives that implement patient care programs such as, "Hospital to Home", "Early Discharge...

  2024 10 12 - Caregiver Research - After Death Massage therapy to recover from three years of caregiving, death event and bereavement 23 paid by MSP 135 one treatment Net cost to me - 112 per treatment The $23 is supposed to be applied to the cost, and the patient pays up the difference but it seems like a ridiculous amount to administer given the impact on the cost of receiving the treatment - who is going to make a financial decision for treatment if it only offsets less than 20% of the cost per treatment?