Family Caregiver Investigation

  It is difficult to understand why it has taken this long for me to understand the real impact of family caregiving on time cost in a family caregiving household. I knew what it felt  like after the first three months. I did not know specifically what it was  until now. For two years I kept thinking there was something I could do to finally get it right. That I only needed to manage my time, my caregiving routines, my household, well enough, and I wouldn't feel so resentful, put upon, taken advantage, trapped. It should come as no surprise that providing a family caregiving bed for a frail elder would have a significant impact on time cost. Additionally, it should come as no surprise that the time cost of providing family caregiving is going to have a significant impact on the capacity and capability for a family caregiver to also perform paid work in addition to family caregiving work. When we brought Mom home, we also brought home her needs for caregiving 24/7. We brou...

  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...

  This was our sixth month of caregiving since Mom came home. Mom was more agitated and starting to show signs of significant memory loss. It was extremely difficult mentally and emotionally to be with her every day. We were still giving her the extra puff inhaler twice a day as well as her regular pills and inhaler in the morning and pills at night. We did a video consult with Mom's doctor and he suspected a UTI. We got her started on antibiotics right away while we waited for tests to come back. We continued to try to keep our costs for paid caregiving down, while I continued to try to keep up with my paid work. At this point I had one overnight away from Mom while my sister stayed with Mom. We logged 88 transitions over the course of the month, this count does not include the daily caregiving for showers and sponge baths. So the number of visitors in and out was more like 6 additional visits per week x 4 weeks = 24. Make the total transitions for the month 112. That is an averag...

 This was our fifth month since bringing Mom home Nov 1, 2021. We were still nursing her through the COPD exacerbation that almost took her life in December. She had quit smoking. We were giving her extra puffer medication to help with her breathing. I was still trying to work full time and manage Mom's caregiving at home. My vision that the second bedroom in Mom's suite would be occupied by a rotation of siblings staying over with Mom was not realistic. I was the only one staying overnight with Mom.  We continued to work on trying to figure out a workable arrangement for caregiving. Home Support would provide 2 hours a week respite care as part of their service offering. In this month we started a schedule of external paid in-home caregiving that included light housekeeping. We also now had a regular schedule of Home Support caregivers coming in six days a week to provide personal care (sponge bath and weekly shower/shampoo). This meant, on any given day, I would have at leas...

  I have started processing time records from 2022. I did not start an organized online schedule until the fourth month, so I don't have any records from the first three months. After reviewing the emails from those months, it is safe to assume my time caregiving was likely higher than the month in this report. I may yet find the paper records from those first harrowing months. In the meantime, we do have comprehensive records after February 1, when I set up and started using my Google calendar for scheduling and tracking significant events. Month 1 - Nov 2021 Notes - we were entering our first month of family caregiving. Mom moved home on Nov 1, 2021 - her 91st birthday. In the first month she was diagnosed with pnuemonia (exacerbation of her COPD) and dementia. The first month was scrambling to keep Mom alive as she was still smoking and struggling to breathe. Month 2 - Dec 2021 Notes - our second month family caregiving. Mom was put onto the Palliative Care Registry, we complete...

  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...

   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...

  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 ...