24 Hours - 2024 01 08

 

I am working to develop a scenario that will allow my family and my household to survive Mom's family caregiving mission. We know that I cannot face another year of 500+ hours a month caregiving and if I cannot do this, Mom is going to have to go into institutional care and if Mom has to go into institutional care, she is not going to survive for very long, compared to the happy days she is spending at home with various of her children and grandchildren looking after her.

Mom is at the highest level of care needs. She is an extremely frail elder who would not be able to push the call button for help if she was alone. During her waking hours she has someone attending to her needs every half hour or so to make sure she has everything she needs.

Mom has 6 children, 5 of them live locally, one at a distance. I am her second daughter, I am her primary caregiver. When Mom needed to move out of her mental health group home, I led the effort to bring her home to our two bedroom suite on the ground floor of our house. I moved into the basement suite with Mom and have been with her since Nov 1, 2021. My husband lives upstairs in our main home and I am able to go there to stay whenever a family member takes on an overnight with Mom.

As we work to develop a workable scenario, we need to be sensitive to the capacity and capability of each family member to commit time to helping Mom. 

SCENARIO 1

Based on 30 day month, 720 hours caregiving per month, 4 weeks per month.

My son is able to come one weekend every two weeks for a nominal fee. His time covers 48 hours for a weekend, or 96 hours a month. This time amounts to 13.3% of the overall 24/7/365 schedule of caregiving that Mom requires. The rate we pay him breaks down to $6.25 per hour. We cover his ferry fare, but not his travel time, which is approximately 4 to 5 hours one way per trip. My husband picks him up from the ferry and also drives him back out again after the weekend. This is another 45 min each way, depending on traffic, so 1.5 hour of husband driving time.

My sister lives out of town, we factor 2 hours one way for her transportation time cost. She comes in on alternate weeks from my son to give me a night at home. Her visits are scheduled for a 24 hour trip from her place, so her time on site is approximately 20 hours with Mom, including the overnight. This time amounts to 6.67% of the overall schedule of caregiving Mom requires. My sister also contributes meal prep for the night she stays over. She does a grocery shop and is keeping track of her expenditures although we have not compensated for her receipts for several months.

My eldest brother lives across the continent. He cannot provide time on site, however, he plays an active role supporting me and my sister, who act as Mom's administrative care team. My brother and I generate the monthly caregiving report and calculate the burn rate for Mom's funds - working to make adjustments to get as much time as possible before Mom's savings are gone.

My next brother has committed to two visits a week, 3 hours per visit. These are social visits. He plays games with her, plays music and sings with her. These visits total 6 hours per week, 24 hours per month. This time amounts to 3.33% of the overall schedule of caregiving that Mom requires.

My youngest brother has committed to one visit per week, 4 hours per visit. These are social and practical visits. For instance, on his last visit he took Mom out to the pharmacy and got her Covid and Flu shots. That was very helpful. His 4 hours a week amounts to 16 hours per month. This time amounts to 2.22% of the overall schedule of caregiving that Mom requires.

My remaining brother is living with us. He is committing to two days per week, 8 hours a day, to help offset his room and board cost to the household. His hours total 16 hours per week, 64 hours per month, or 8.89% of the total required. 

In this scenario, I am committed to 472 hours of caregiving for the month. This is 65.56% of Mom's caregiving schedule. There are no rules or labour laws that govern the work I am doing, although, if anything should happen to her, I would be investigated and held responsible for any failure to manage her exposure to risk.

There is no budget, accountability, or traceability for the use of our property as part of our critical healthcare infrastructure. There is no budget, accountability, or traceability for the use of my time, or the time of my family members, as part of our critical healthcare infrastructure.

What I want to know is this. 

What would be the commensurate costs of keeping Mom in an institutional facility with paid staff? What would be the proportion of budget assigned to administrative and management tasks? What would be the apportionment of budget to maintain the property? How are property taxes calculated? How do they factor per care bed? How is property insurance calculated? What is the insurance cost per care bed? 

I want to see a line by line cost comparison between what it would cost the healthcare system to have Mom in an institutional bed and what it is costing to have her in our home. Then I want to calculate the real cost of having her at home as a time and materials comparison to that institutional bed.

There is something very wrong here and it needs to be rectified before we face a nightmare scenario of our frail elders without adequate care infrastructure.