Family caregiving - 24 hours of care - Jan 2024 - 2024 01 29

 

This is what it looks like for our family to provide 24/7 caregiving for our frail elder Mom for the month of January, 2024. 

Mom enjoys having her children and grandchildren taking care of her. It gives her a lift to spend time with her family. She loves all her children and their offspring. It gives her life meaning to be with family during this final phase of her life.

This schedule breaks down a caregiving staffing schedule for 7 people, including the primary caregiver. The schedule also breaks down to 91 caregiving shifts, or an average of 3 caregiving transitions each day. Of course, some days are 24 hours, other days have 4 or even 5 shift changes. In addition to the family caregiving schedule, there is also the schedule of Home Support caregivers, who come 6 days a week to provide personal care (4 days per week) and shower/shampoo (2 days per week). In the month of January there were 26 days of Home Support caregiving visits - so add 26 transitions to the 91 shift changes - that is 117 transitions and shift changes throughout the month, almost 4 per day, interspersed across the day, starting at 8 am and ending as late as 10 pm on alternate Fridays. There is also a weekly delivery from the pharmacy, where Mom's medications are packed to manage daily administration. These deliveries happen on Tuesday, usually around 7 or 8 pm. There were 5 Tuesdays in the month of January, so add 5 more transitions to the schedule for a total of 122 transitions and shift changes for the month. These transitions and shift changes all require attention for the primary caregiver, to make sure everyone knows who is coming and when. There is also special attention needed for Mom, because she will balk at having the shower/shampoo if she isn't properly primed during the day leading up to the time the Home Support caregiver arrives to do her service.

This month represents a shift in our core family values to provide care for Mom and support for my household. At the end of December, after two years of providing 500+ hours of caregiving a month, I let my family know that I was depressed and did not know how we could continue to keep Mom home. We did a re-organization for family caregiving contributions and this month represents a significant decrease for my time (416.5 hours down from 534 hours).

However, when we are factoring the cost of family caregiving, we need to account for the cost of time to all family members. We need to establish a fair base rate to use to calculate the cost of time for family caregiving, and then specify the amount each family member is contributing, based on time with our care recipient.

What we need is a fair base rate that represents every hour of care provided in a family caregiving setting. This could then be compared to a fair base rate that represents every hour of care provided in an institutional setting. With this data in place, we could finally look at the flow of resources to each of these settings, and identify a fair distribution of resources for the time provided.

Note - this is not a discussion of the material costs of family caregiving vis a vis institutional settings. That is a very different set of categories and calculations. At present we are simply looking to establish an equitable, rational method to value family caregiving, institutional caregiving, and the flow of resources to support those beds.