Family Caregiver Investigation

  Iris blooms in the first rays of sun as we move closer to solstice and the early morning sun moves further north, rising over the shoulder of Mount Seymour. It has been a while since I last posted on this topic. In the meantime, I have been writing songs and making drawings to make meaning of life: what it means to be seventy years old, what it means to be a woman in times of catastrophic system collapse, what it means to rebuild my life after looking after Mom, what it means to live in a world that no longer has my Mom's smiling face and warms hands nearby. I have taken time to recover from the mental, emotional and physical burnout after 3 years of operating a long term care bed for Mom in our home. I am still recovering from the financial impact of those years. At the same time, as I recover, I continue to think about the systemic deficiencies that contributed to the hardships we endured because we decided to bring Mom home. As I recover from my own caregiving experience, I no...

"It costs less to care for our seniors at home." This is the prevailing assumption that underpins policy and legislation shifting the work of caregiving from institutional settings to home-based settings. Policies such as "Age in Place", "Early Hospital Discharge" and even, "Hospital to Home" are all based on this idea.  Where is the comparative cost accounting data that supports this claim? How much does it cost to operate a caregiving bed in an institutional setting? How much does it cost to operate a caregiving bed in a home-based setting? How do we measure these costs? How do we value these costs? What portion of these costs should be supported by personal financial resources? What portion of these costs should be supported by public financial resources? How do we decide the distribution of cost and responsibility?  Is a home-based caregiving operation considered part of our overall healthcare infrastructure? What is the difference in categor...

  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...

   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?  

Mom passed away at 4:03 pm on October 4, 2024. She was 93 years old, less than one month to her 94th birthday, which would have been on November 1. On Thursday, the day before, the Palliative Nurse came to see how we were doing. My sister had been here for a couple of nights to give me respite from overseeing the 24/7 emergency long term caregiving schedule that had been implemented on Tuesday, September 24. My sister was also here on that Tuesday, when we realized we could no longer care for Mom on our own at home. Mom was too weak to hold her weight to stand up to use the commode, and I was not strong enough to hold her weight for her.  Mom had come down with a suspected stomach flu on September 4, but it is hard to tell exactly when the flu started. We had been dealing with bowel emergencies before that. We implemented the dietary protocol to deal with diahrrea and intestinal inflammation, because Mom wasn't absorbing any nutrition from any of the food she was eating.  Mom'...

  This morning Adele and I have moved our base of operations upstairs. Mom is downstairs in the basement suite, where I lived with her until yesterday. Yesterday we took the step of putting Mom into Emergency Long-Term Care.  The tipping point for us, after three years of family caregiving, was that Mom could no longer hold her weight to get to the commode, and I could not hold her weight to make up the difference. I purchased a bedpan from the Amazon, but had never used one and had no idea how to use it with Mom. The stress of toileting was overwhelming. Emergency Long-Term Care has a three month waitlist. In the interim, while we wait for a bed to become available within our healthcare authority, Mom is provided with 24/7 professional caregiving in-home. This means I do not have to worry about her toileting anymore. It also means Mom has caregivers in her suite at all times, and I don't have to be there in the same way. There are many questions to answer, to shift operations...

  Yesterday the Palliative Care Nurse came to visit. Mom's benchmark indicators for her overall health had recently shown non-reversible signs of decline: acute pain in her knee and general overall weakness meant she needed more help with getting dressed, standing and walking; she would spend an entire 24 hour cycle in bed gathering her strength; she was sleeping more; her appetite had diminished significantly.  The Palliative Care Nurse came to visit to discuss her assessment of Mom's current state of health, and how we can prepare for what is coming next. Mom is adamant that she wants to let 'nature take its course' and pass away at home. Within the first month of Mom moving back home, after aging out of mental health group housing (40 year residency), she was put on the Palliative Care Registry. This was in November, 2021. I had taken on the role of Primary Caregiver, we had made space for Mom to live with us in our home. She was in the middle of a COPD exacerbation ...

  We had our first assessment with Case Manager this week, to see if Mom could be registered with the Family Respite Centre. The Family Respite Centre is a facility that provides overnight long term care accommodations for up to 30 days a year so that the primary caregiver can get a significant break from caregiving duty.  The assessment process was a sit-down interview answering questions from a questionnaire. One of the questions was directed at me, and it read, "How many hours a week do you provide care to your Mom?" This question is impossible to answer because, on the one hand, a family caregiver might think they are supposed to account for hours based on time on task, with 'task' defined as actually doing hands-on work - meal prep, sweep up, dishes, laundry, floors, etc. But the work of family caregiving does not fit into this model for measurement because most of the family caregiver's time doing hands-on tasks is too short, numerous and variable to measure...

 

 

  I finally got the April caregiving schedule sorted out and now I know how many hours I am on caregiving duty this month if there are no changes (398.5 hours / 720 total hours) or 55% of the caregiving time. This also means I am providing caregiving duty for 55% of my lifetime for the month. That leaves me 45% of the month to my own work, my self care, caring for my household and property, etc. There are 6 days of the month that I am not scheduled to cover caregiving. Put another way, I am on caregiving duty 24 days of the month. On the days I am not on caregiving duty, I am on call in case there are questions are problems arise that need my help to reduce tension (ie. Mom won't let the Home Support Caregiver give her regularly scheduled shower and shampoo). Mom has a team of 7 family members contributing their time to her care. This schedule means that she is never left alone. There is always someone who is attending to make sure she has what she needs and her risk of accident or...