Measuring Wear and Tear - 2024 01 15

  

How do we measure wear and tear in family caregiving households?

My son calls it, "Time Confetti". It is the myriad tasks and activities that we do to keep our caregiving homes operating smoothly. It is all the dimensions of family caregiving and self-care that sustain a home-based caregiving operation. It is defined as tasks too short to plan or measure that maintain the operations of a functional home, a family caregiving operation.

I have tried several approaches to define and capture where my time and energy are consumed in my work to provide housing and care for my frail elder Mom. I do this, in part, to explain to myself why I don't have energy to do 'extra' things, like a plan a trip to visit my newborn granddaughter in Montreal. I want to understand why my mind is a blank when Mom goes for two overnights to my brother's house and I don't have to immediately take care of her needs. Just when I thought I would have some precious discretionary time to pursue my own interests, that is when I fold a little laundry, notice the shower base needs a thorough scrubbing, the floors need washing and I go lay down to watch a murder mystery.

My conclusion is the only way we are going to quantify the work of family caregiving a frail elder is to set up a series of motion activated cameras in every room and leave them running for a month. At the end of the month, we go through the video records with a fine tooth comb and identify all the different kinds of activity that is going on in the home.

How many times did I interact with Mom?

What kinds of tasks contributed to her physical well being?

What kinds of tasks contributed to her mental and emotional well being?

How and when was I able to get time for self-care when I was also on duty to look after Mom? 

Who came to help with Mom and how long did they stay? Did they do any housework? What did they do while they were here?

Caring for a frail elder at home, one who expects to, "Let nature take its course," is not likely the same as any previous life experience many of us may have had. It can take a year to get acclimated to new relationship dynamics, new routines, new medical responsibilities. It can take another year to realize that every routine you thought you had sorted out yesterday is going to change today. Although there is a tedious sameness to the work of everyday (meals, medications, cleaning, errands), there is also the continuing contemplation of mortality, there is the continuous monitoring and mitigating for risk of fall, risk of incontinence, risk of agitation caused by dementia or unidentified infection, there is the neverending response to emerging needs and problem solving to address them. Hovering in the background is the compelling pressure to do the best job possible, to be seen as responsible, exemplary, superlative at the job of family caregiving. Always in the background is the knowledge that at some point something is going to happen that will signal the beginning of the end of your frail elder's life. In every shift from bed to commode, to sit in the big chair in the livingroom, is the mantra, "Not on my watch".

How do we measure family caregiver's wear and tear?


Comments

Post a Comment

Popular posts from this blog

Lived Experience - 2024 10 28

Image
  Yesterday I attended a meeting of our local community group, 'Age Against the Machine'. The purpose of this group is to build family, friend, neighbourhood and community resilience to support each other when we can no longer fend for ourselves. I shared what I have learned these past three years of operating a palliative care, then a long term-care, and then a hospice care bed in my home so that our Mom could spend her final years and days at home with her family. The absence of cost accountability for family caregiving in legislative, policy and institutional strategy is alarming. It places an unaccounted burden of care on families who strive to make up the functional difference between what their family member can do for themselves and what they can no longer manage. The work of family caregiving has remained invisible to research priorities, and health provider initiatives that implement patient care programs such as, "Hospital to Home", "Early Discharge...
Read more

Family Caregiving Time Summary year ending 2023 - 2024 01 17

Image
  As I work to understand the impact of family caregiving on my family and my household, I have divided the cost into to two categories: Time and Material. Time refers to the cost of time providing caregiving service to my mother, the amount of time we are spending to look after her. Material refers to the non-time tangible costs, these include property cost, lost wage earning, and other lost revenue cost, as well as other tangible expenditures resulting from providing a fully serviced family caregiving bed to the healthcare system. In 2023 my family caregiving service was responsible for 8761 hours of caregiving for my Mom (1 extra hour to account for daylight savings). We were 100% responsible for staffing Mom's home-based living space. This included a requirement to have someone sleeping over with Mom every night. My caregiving time on duty for the year totalled 6,127 hours, or 70% of the overall amount of caregiving time required. This averaged to 511 hours a month. The rest of...
Read more

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

Image
  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 ch...
Read more