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One hundred percent responsible - 2024 08 27

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  There are 168 hours in a week (24 x 7). When you are operating a long-term care bed in your home for a family member who can no longer fend for themselves, your hours of caregiving duty is 168 hours a week. That is 100% of the time. That is why becoming a family caregiver is the same magnitude of change as becoming a new parent. You are responsible for the health and welfare of another human being. When you have respite, say, for 8 hours a week, from Home Support, then your caregiving hours for that week are 160. Overnights count. You are still on call and responsible for the health and welfare of your care recipient. If we were to hire an external caregiver to stay overnight with Mom so we could get a night away, the rate should be budgeted for at least $30/hr. A 10 hour sleepover (if you have 1 hour to get to bed, 8 hours sleep, and 1 hour to get up in the morning), that would cost $300 for that one overnight. Even then, we are responsible and on call. Does anyone have access t...
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Exploited - 2024 06 04

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The convenient rationale for shifting caregiving to family homes is that it 'costs less'. This is a false claim that perpetrates a healthcare system that is exploiting family caregivers. Family caregivers are typically exhausted and burned out. They feel exploited by the healthcare system because their time and material costs are not acknowledged or compensated anywhere near approaching their actual expenditures.  To access any supports, they have to add work to their already over-extended schedule to research, make applications, provide documentation, etc. The value of supports is eroded by the cost of accessing them. Family caregivers feel taken advantage because their time and material expenditures are not tracked or accounted in the health care system. They are assumed to give their resources to the care of a family member as an individual choice, rather than a collective, community responsibility. However, there is no real choice, because the alternative to their family ca...
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Making a commitment to care - 2024 01 26

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  I have been processing the time records from 2022 and thinking about how impossible it was that I was trying to take care of Mom, a frail elder with complex health issues, and work full time. Even if you remove my attempt to maintain my fulltime paid work, the fact that I was on caregiving duty each month, sometimes exceeding 600 hours in a single month, often more than 550, never less than 500, was already an impossible workload to survive with any degree of success. In early April, 2022, I wrote to my friend, a health science professional, about the situation I was in, "I wonder if we have an accurate assessment of the real cost of transferring primary caregiving duties into home-based care and how those costs are being calculated, factored and substantially shared by stakeholder institutions - institutional providers, municipal government, provincial government, health services, federal government. These are my top-of-mind thoughts after our discussion on Tuesday. What I noti...
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How is this supposed to work? 2023 12 29

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  I may never understand how this was supposed to work. I certainly did not anticipate what it was going to feel like entering my third year of family caregiving, another year of 500+ hours a month looking after my Mom. I did not understand that my family, all my siblings, would be perfectly fine with leaving all this work to me. That they may express some guilt, they may take on 1% of that caregiving work and consider their job done. It is really hard right now to look ahead at 2024 and know that it is all on me. That if I fail, if I falter, if I give up, Mom is going into an institution and there is good reason to believe that her life will be over not long after that. It is hard to live with the knowledge that there is no backup, there is no replacement for me. That the longevity of Mom's life, the number of days she has left, depend on my capacity to continue showing up day after day. There is no budget to pay for my replacement. There is no budget to pay for professional help....
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Loss of autonomy - 2023 12 14

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Caregiving Circumstances - 2023 12 04

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  Blue Donkey - paper, ink When I understand my circumstances I can make sense of the difficulty I am facing and adopt a healthier attitude toward managing and finding solutions. Mom is awake, the day begins again. We both slept in, it is already almost 830 am. Statistics Canada reported almost 20% of the Canadian population is over 65 years old in 2022.  I wish Mom good morning and smile. She is very sensitive to my mental and emotional state of mind. Being with Mom is a lesson in self regulation and maintaining a positive attitude in the midst of difficult circumstances. I have emptied the commode, and brought her juice.  Statistics Canada reports population projections that 21 to 29% of Canadians could be aged 65 or older by 2068. Source: Table 17-10-0057-01, Statistics Canada, 2022 When I return after eating my own breakfast, I bring Mom her morning cup of tea. She is sitting on the side of her bed with her day clothes on the bed beside her. Her pyjama top is half off...
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I don't think so - 2023 10 21

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  Early this morning, out of curiosity, I made a list of things that need doing. These are near horizon things only, they just need doing as soon as I can get to them. There were 48 items on the list when I had to stop because I had to get busy helping Mom with her morning routine. Last summer I was informed that SPOR Evidence Alliance had selected my research topic for a $50,000 research grant to conduct an initial literature review. My research topic was to look into the quantitative data of family caregiving - what do we know of the time and materials costs of family caregiving documented through receipts, time and motion studies, time on task records? My writing this evening is interrupted with the slow shuffle of Mom's slippers in the hall. "Jenny, can you come and help me? I can't get the blankets on the bed." Mom was upset. She had gotten into her pyjamas, her dentures were soaking and she had taken care of her toileting needs. What had defeated her was not bei...
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