Family Caregiver Investigation

  Strategy for Patient Oriented Research funded a scoping review to learn what research had been published about evidence-based cost accounting in long-term care. Specifically, we were looking for cost accounting data about home-based long-term care for frail elders with complex needs (require caregiving 24/7). In the process of conducting that review, we developed a proposed framework for cost accounting categories that could serve across diverse caregiving settings - the operation of long-term care beds in institutional and home-based settings. We hope to one day answer the question, "What is the cost of operating a long-term care bed in an institutional and home-based setting? How do these costs compare? What are the relative costs and benefits of operating long-term care in these settings? How do we decide where to allocate resources to support these operations? How much funding needs to flow to each of these operations to sustain caregiving infrastructure?

My next writing project is a series of ten mixed media blog posts about caregiving.  Specifically, my work is focused on how we make the work of caregiving visible and sustainable. I am interested in how we make caregiving count, how we account for it.  Right now, there are millions of caring people who work uncounted hours helping a family member or friend who cannot fend for themselves. They give up a bed in their home, to operate a caregiving bed. For some people, this work is draining their resources, depleting their quality of life, and seriously impacting their mental, emotional and physical health. Their socio-economic vulnerabilities increase with each passing day, week, month and year.  A friend of mine has watched her sixties disappear as she cared for a partner who suffered traumatic brain injury from a stroke. It doesn’t have to be this way. I am here to help change the circumstances of caregiving, especially for family caregivers, for the better. - Jenny...

Boyd, K., Winslow, V., Borson, S., Lindau, S. T., & Makelarski, J. A. (2022). Caregiving in a Pandemic: Health-Related Socioeconomic Vulnerabilities Among Women Caregivers Early in the COVID-19 Pandemic. The Annals of Family Medicine , 2845. https://doi.org/10.1370/afm.2845 Eales, J., Fast, J. E., Duncan, K., & Keating, N. C. (2022, February 20).  Family Caregiving Worth 97 billion.pdf . University of Alberta, Department of Human Ecology. I have this question about the quality of life and the quality of care and who benefits from the work being performed by family caregivers.  In a family caregiving setting, the Primary Caregiver serves multiple roles, vertical and horizontal, within the caregiving organizational structure. This means there is an unprecedented integration of intelligence about the work and managing the operation of a home-based caregiving bed. This is an extraordinary level of responsibility and authority assumed by the Primary Caregiver, it is e...

  How it started.  When we brought Mom home, we did not know the depth and breadth of responsibility we were taking on.  First, Mom had been living in a supervised mental health group home for forty years. This meant that her meals and medications were provided. She never had to cook, all her food and beverage intake was managed by the group home staff. She never had to manage her own medications, they were delivered to the group home and administered, with a scheduled routine, by the group home staff. During daytime hours Mom was free to come and go, although she had to notify staff if she was going to miss a meal. After 10 pm the exterior doors were locked overnight. The home was staffed 24 hours a day. We planned to replicate that level of staffing and daily routine in our home. At this point, we were operating a mental health group home bed. Second, Mom had aged out of the mental health group home system. She had several health issues leading up to this moment. Her in...

  I'm using a combination of the framework and items we developed from the Scoping Review, and a small business Chart of Accounts that would be used to manage operations for a home-based long term care bed.

  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...