Family Caregiver Investigation

  Yesterday the Palliative Care Nurse came to visit. Mom's benchmark indicators for her overall health had recently shown non-reversible signs of decline: acute pain in her knee and general overall weakness meant she needed more help with getting dressed, standing and walking; she would spend an entire 24 hour cycle in bed gathering her strength; she was sleeping more; her appetite had diminished significantly.  The Palliative Care Nurse came to visit to discuss her assessment of Mom's current state of health, and how we can prepare for what is coming next. Mom is adamant that she wants to let 'nature take its course' and pass away at home. Within the first month of Mom moving back home, after aging out of mental health group housing (40 year residency), she was put on the Palliative Care Registry. This was in November, 2021. I had taken on the role of Primary Caregiver, we had made space for Mom to live with us in our home. She was in the middle of a COPD exacerbation ...

  We had our first assessment with Case Manager this week, to see if Mom could be registered with the Family Respite Centre. The Family Respite Centre is a facility that provides overnight long term care accommodations for up to 30 days a year so that the primary caregiver can get a significant break from caregiving duty.  The assessment process was a sit-down interview answering questions from a questionnaire. One of the questions was directed at me, and it read, "How many hours a week do you provide care to your Mom?" This question is impossible to answer because, on the one hand, a family caregiver might think they are supposed to account for hours based on time on task, with 'task' defined as actually doing hands-on work - meal prep, sweep up, dishes, laundry, floors, etc. But the work of family caregiving does not fit into this model for measurement because most of the family caregiver's time doing hands-on tasks is too short, numerous and variable to measure...

 

 

  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...

  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...