How much help - 2024 08 03
We are not going to get accurate Time and Material cost data relying on care recipients' memories of how much care or help they received in an average week.
If you ask my ninety-three year old frail elder Mother, with complex, increasing health and personal care needs, "how many hours of care or help do you receive in an average week?" you are not going to get an accurate accounting of how much help or care she needs.
Mom can't remember if she ate breakfast by the middle of the morning. She doesn't know how much care or help she has received by the time she is toileted, dressed, breakfasted and sitting in her big chair in the middle of the morning.
We are also not going to get accurate Time and Material cost data relying on caregiver memories of how much help they are giving in an average week.
If you ask me, "how many hours of care or help do you provide in an average week?" I could not answer you without reviewing the time records I have been keeping on a monthly basis so that I can document time contributions to Mom's care. I might be able to answer, "Usually not less than 400 hours and usually not more that 500 hours per month." I would have to ask, "How are you quantifying and qualifying 'help' and 'care'?" I would further ask, "How are you measuring for loneliness, companionship, monitoring, standby, overnights, social-emotional, cultural, and family time?" "How are you measuring for time spent managing, administering, team building, communications, and property maintenance (including housekeeping?). How are you measuring for grocery shopping, food preparation, mealtimes, and cleanup?"
My experience, as the primary family caregiver for my frail elder mother, is that the work of providing help and care to those who can no longer fend for themselves, is a constant juggling act, working to maximize effectiveness of effort in relation to conserving time and motion. I am often doing more than one thing at a time, often combining tasks to reduce overall drain on my resources. I am also, most commonly, thinking about how I am going to manage my caregiving responsibilities in the down time between executing active caregiving tasks. The work of caregiving does not start and stop with the emptying of the commode in the morning. The work of managing, administering and overseeing risk management does not start and stop when I am making the bed, fetching a cup of tea, or making sure Mom's feet are elevated.
At present we have no over-arching organization or oversight of the work that is being carried out in family homes to operate long-term care beds for family members who can no longer fend for themselves. At present I have not come across any evidence-based data that provides an accurate portrait of the Time and Material costs of operating these home-based long-term care beds. There is a profound gap between the lived experience of family caregivers and the work they are performing to take care of aging family members, and evidence-based research knowledge that might portray an accurate picture of what is entailed to do that work.
At present we do not have a method to compare the cost of home-based long-term care bed operations and equivalent operations in institutional settings.
In the absence of this comparative analysis, we don't have any reliable means to justify or quantify the flow of resources to one or the other of these settings. We have no basis to ensure an equitable distribution of resources to support a sustainable strategy to depend on the work of family caregivers to bolster the healthcare system.
"How many hours of care or help are received in an average week?" Let's also ask, "How much does it cost to provide a long-term care bed in a family home? What are the legitimate Time and Material costs that contribute to an accurate cost accounting of operating a long-term care bed in a family home? How do these costs change over time as increasing frailty result in increasing needs for care and help?"
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