Family Caregiver Investigation

Caregiving time distribution, November 2023 My story of family caregiving is not unusual. In fact, it is possibly better than average because my Mom is such a kind, generous and gracious person. That does not change the fact that it is unsustainable.  For the month of November I contributed over 500 hours of caregiving, including providing room and board, as well as Power of Attorney, Medical Representative and Mom's finances. It begs the question. How is my family supposed to contribute this much time, property, expertise, responsibility and administration without additional operational cost accounting? How am I expected to carry on life as if there were no cost to me personally, professionally, mentally and emotionally? As I look back on 2023 and what we have accomplished, I am proud of the work we have done to keep our frail elder at home, healthy, happy, contemplating the end of her life with dignity and composure. As I look ahead at 2024, I feel overwhelmed, dreadful, guilty a...

  There has been no news from Evidence Alliance about progress on activating the $50k grant that was awarded to research my health topic about the cost of providing a family caregiving bed compared to the cost of providing a caregiving bed in an institution. Last night we took Mom on a special outing to hear the West Coast Symphony Christmas Festival and Audience Sing-Along. There has to be a related question with regards to the cost of caregiving and providing institutional healthcare when the work that would normally be done by a qualified, vetted, educated health professional is being carried out by a self-trained family caregiver.  She wore her early Christmas present, a new corduroy suit. My sister had the suit made by a local tailor. I took Mom's measurements as per instructions, my sister handled the rest of the purchase.  What does this say about the quality and cost of services and infrastructure that is being provided in healthcare institutions? What does it say...

  Looking at one set of numbers from Stats Canada on age and population as of 2022.  Statistics Canada. “Population Estimates on July 1st, by Age and Sex.” Government of Canada. Accessed December 4, 2023. https://doi.org/10.25318/1710000501-ENG. Statistics Canada reports the data in increments of 5 years of age - ie. 0 to 4 years, 5 to 9 years, etc. through to 100 plus is the final age group. PERCENTAGE OF POPULATION INCREASE 2018 to 2022 I wanted to understand the relationship between population increase in young dependents (children who cannot fend for themselves through to young adults who are supported by family to get an education, training, etc.); population increase in young, middle and older adults who are supporting children, supporting households, and possibly supporting frail elders; and population increase of elder adults who are aging out of the workforce and maybe experiencing some degree of frailty, that they are no longer able to fend for themselves and they ne...

  Many of us have, or are, or will, face the question - should we bring our frail elder home instead of putting them in long term care? One of the realities of this decision is that your private family home will now be put into service as an unaccounted part of the healthcare system. You will be joining millions of family homes that are providing unfunded infrastructure to the healthcare system. What does this reality entail? First and foremost, you will now be responsible for overseeing and/or operating a 24/7 healthcare facility which means you will be actively managing over 700 hours of caregiving time every month (30 day month = 720 hours; 31 day month = 744 hours). Whether you cover this time yourself, with unpaid family and friends, paid professional, or limited service support from your local health authority, you will be responsible for the quality and level of care provided to your frail elder. How will you incorporate this additional role and responsibility to your existi...

  We have been going through a difficult month with Mom's health. Her digestive system was giving us information that it needed more dietary fibre and she needed to be a little more active. It was hard on Mom, as well as the rest of us, as we cleaned up one bowel emergency after another.  It has taken me two years to build up a family caregiving team that is (somewhat) manageable for me and my continuously depleting resources. As Mom grows weaker and her complex health needs require more time and attention there is an escalating overlap of needs increasing in relation to resource depletion. We live with this constant tension of completing the mission of looking after Mom and watching the burn down of our resources, hoping our resources outlast Mom's lifeline. It doesn't have to be this way. When we build strength in our family caregiving community, in particular enacting rational healthcare infrastructure systems to support family caregiving beds in family homes, we will be...

  What happens when a family is suddenly responsible for an additional 24/7 caregiving operation in their home? How does the family identify the new workflows, incorporate them into existing household management systems, and maintain these new workflows over an indefinite time?  What happens to existing household management systems when the work to support the family caregiving operation increases over time as the needs of the care recipient increase due to their failing health? What are the dimensions of care in a family caregiving operation?  How are individual work tasks identified, scoped, scheduled, budgeted and assigned?  Who is tracking the health and well being of the family caregiving operation? How is the quality of work being performed assessed, traced, reported? How are we going to manage millions of family caregiving operations providing billions of dollars of value to the economy?  What is the specific work that is being planned and completed?...