Family Caregiving is a Team Sport - 2024 04 10

 

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 injury is kept to our lowest possible threshold. 

Our family is now in its third year of providing family caregiving for Mom. This is the first year that I have been able to get my caregiving hours below 500 hours a month. One factor that is contributing to this change is my ability to run an operations schedule and to calculate the distribution of work across the family. Providing specific accounting of family members' time contributions has given me the confidence to insist that I not be left alone with Mom on weekends. It is just too lonely and overwhelming to be left home with Mom when other family members are out pursuing recreational, social and entertainment pursuits.

If Mom was in a long term care facility, she would not have the cognitive ability or the physical strength to press a call button if she needed help. Temperamentally, she is not one to ask for help, either, so she would be more likely to wait for someone to come or try to do something herself, which would increase her risk for neglect or injury from a fall.

When Mom moved in her family doctor estimated her life expectancy to be not more than 6 months. Now that we are two and a half years into family caregiving, I cannot afford to think about whether Mom is in a state of imminent, precipitous, fatal decline. Living in that state was what delayed my work to build a functional family team to survive our family caregiving mission.

Family caregivers know the burden of work they are shouldering but they don't have specific data to help them understand how to demand better supports. I didn't start tallying up the hours until my depression forced me to get serious about the work I was doing and how I was going to survive.

There are 720 hours in the month of April. How is your family pulling together to make sure the work is distributed fairly? How are our communities pulling together to make sure our family caregivers are not falling into crisis due to unfair work requirements?



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