Caregiving Time Review 1 - 2023 09 09

 

Family caregiving responsibility is work that covers 24 hours a day, 7 days a week. In our household this responsibility has been assigned and managed on an ad hoc, normative, as needed, basis. Our family is following normative patterns for the assumption of family caregiving responsibilities - typically female, which also happens to redound to lead homemaker.

We call it "Family Caregiving" because the work of caregiving is being carried out within a family setting as opposed to an institutional (ie. professional health provider) setting. A private family home is providing essential healthcare infrastructure. This private family home healthcare infrastructure is being executed, managed and administered by a private family member, often the female lead of the household. The work of caregiving - the day to day tasks that make up successful fulfillment of family caregiving responsibility, are often carried out by this same female lead, it may also be delegated to professional paid support, professional health authority support, non-professional family support, and unpaid family support.

The family caregiver lead ensures 24 hour / 7 day a week caregiving infrastructure is working to maintain the health and well-being of their family member who can no longer fend for themselves. On a monthly basis, these hours add up to:

• 744 hours for a 31 day month
• 720 hours for a 30 day month
• 696 hours for a 29 day month (leap year)
• 672 hours for a 28 day month

The family caregiver lead is responsible for 

1. resource assignment, 
2. quality assurance (including in-home orientations, training), 
3. risk management, 
4. communication management, 
5. stakeholder engagement (ie. health provider liaison, family contribution), 
6. scheduling management, 
7. scope definition,
8. finance management,
9. procurement (human resources, materials, supplies, facility, grounds, transportation)
10. overall system integration (planning, oversight, tracking, administration, reporting, lessons learned)

Essentially, the family caregiver lead is working as a time-limited operations manager whose duties sometimes, or often, include carrying out the day to day tasks to maintain a viable family caregiving operation. I say 'time-limited' because the family caregiving operation is not expected to continue in perpetuity, the operation will end when the family member no longer needs family caregiver infrastructure (ie. a frail elder passes away).

Oversight of these operations entail managing risk of serious injury or death. These operations are also designed to provide for a dignified, comfortable, secure end of life for the care recipient. The final outcome of this operation, when it has successfully completed its mission, is the gentle passing of a loved one at home or in the setting of their choosing.

Time required for family caregiving is not fungible, it is the fact of family caregiving. There are infinite permutations of how any given family manages their particular family caregiving operations. The time required for family caregiving work does not change. The quality of the work grows more complex and difficult as the health of the care recipient declines, a predictable trajectory that increases demands on the family caregiver lead's time as well as increasing complex care for the declining care recipient.

At present there is no systemic mechanism in place to ensure family caregiving time is properly supported to carry out the mission of providing family caregiving infrastructure. For now, families are responding as best they can to medical crisis and adjusting to the fact that a family member needs help and can no longer fend for themselves.

In our family caregiving household we are completing our second year of caregiving for our frail elder mother who was not expected live past May 31, 2022. We continue to grapple with the evolving needs, requirements and exigencies of leading our family caregiving mission, to see our elder through to fulfillment of her wish for a 'home death'.

I have collected time on duty caregiving to provide 24/7 family caregiving infrastructure in our home. The numbers I am reporting now are for the period Jan to Aug 2023 - the first eight months of this year. At this time we are a fairly experienced household in meeting the requirements for providing family caregiving infrastructure.

In our family the role of family caregiver lead has been assumed by me, second eldest daughter. I have had to significantly curtail my professional work as a project manager to carry out the work required to keep Mom at home. 

My time providing caregiving infrastructure averages 70% (4,119.5 hours / 8 months; avg 514.94 hours caregiving per month) of the overall caregiving time required to provide 24 hour / 7 day a week care infrastructure. There are five other siblings in this family group, who contribute their time to help alleviate caregiver burnout. They are collectively covering 21% of the caregiving time, there is an uneven distribution of work depending on the level of engagement each family member has to the mission. 

As a family caregiver lead, I would have found it helpful to understand, as a family member, and also as a family group, what it was going to mean to bring Mom home. 

How much of a difference would it make if identifying the family caregiver lead served as a triggering mechanism to open up a flow of support to the family, the family caregiver lead and the family household?

We certainly wouldn't put professional health providers in the situation family caregivers are managing without adequate supports. It isn't okay to put caregiving families in these extremely difficult situations.