The Angry Caregiver

  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...

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...

  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...

  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....

 

  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...

  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...

  If we are going to change the face of family caregiving we need to re-conceptualize our understanding of who is on the family caregiving team. The burden of family caregiving has been defaulting to daughters and now, even granddaughters of our frail elders. We need to build our family caregiving teams to include our sons and grandsons.  There is no reason for the predominance of caregiving falling onto women's overworked shoulders other than historical and cultural bias. We can only change these conceptions by working at a historical and cultural level to re-set these defaults. We need to re-calibrate our values, assumptions and workload distribution. As a society, we need to value caregiving as a noble pursuit, that ascribes cultural capital to those who put in the time. We need to dignify the work of caregiving in the family home and make it unthinkable that anyone would leave a single family caregiver in charge of providing care for 300, 400 or 500 hours a month. We need ...

  Everyday work is being assigned to millions of private citizens that entails life and death decisions, health and safety risk, and operations management on behalf of the health care system.  This work assignment is done during a family health crisis when family members are responding to a family emergency when a family member is no longer able to fend for themselves. The scope of the work is only partially defined - typically the specific instructions from the health provider to dispense medication, oversee therapy, and, in some cases, carry out wound management or other medical maintenance tasks. The undefined scope of the work assumes the family care responders will ensure the needs for shelter, transportation, clothing, food, financial security, emotional and mental health, social connection and personal care are provided.  There is no process of formal work assignment. There is no framework for organizing the work - planning, traceability, accountability, reporting....

  When our family members can no longer fend for themselves a family caregiver emerges to take up the extra workload. This extra workload is handed over to family caregivers as an essential component of 'early discharge', 'hospital to home' and 'aging in place' healthcare policy. The first formal occurrence of that extra workload is often identified during the handover consultation in a doctor's office or healthcare institution. This handover consultation typically marks the conclusion of a health crisis and a milestone that begins a new healthcare reality for the patient and the family caregiver.  The nature of that extra workload varies as individually as the medical diagnosis facing the patient and the caregiving family. The family caregiver receives instructions for care as the health provider discharges their patient from their direct care. These instructions are often given verbally, there might be a quick demonstration of specific medical procedures t...

  It is not difficult to identify the onset of family caregiving work. It occurs the moment there is another person in the room with the health provider because the patient about to be discharged cannot fend for themselves.  In this moment, the family caregiver is taking on work that is not quantified, supervised, or traceable. This work is not accounted or planned as part of the overall infrastructure of the health system. The fact is that if that family caregiver was not in the room to receive discharge and care instructions, the patient they are discharging would be back in the institution in short order. We know there is work being assigned because the family caregiver is given instructions on specific medical, therapeutic or health tasks essential to positive outcomes for the patient. Essentially, there is a transfer of patient care and in that moment, there is currently no organizational or systemic trigger that ensures sufficient transfer protocols include the work bein...

  The invisibility problem of family caregiving exists across all stakeholder groups including: Government legislation Health authority governance Health provider protocol General public knowledge Private citizens providing family caregiver infrastructure and performing family caregiving duties This invisibility is a growing issue as legislation, policy and protocol are initiated for 'early discharge', 'hospital to home', and 'aging in place' without adequate evidence based data to understand the true cost of family caregiving. The invisibility problem is not going to be addressed by those institutions who benefit from the lack of data by offsetting the cost of care from institutional settings to family households. The invisibility problem is not going to be addressed by social and cultural norms that historically undervalue, devalue or deny the true cost of caregiving, including family caregiving. The invisibility problem is not going to be addressed by family ...

Before bringing home your family member for 'early discharge', or 'aging in place', or 'hospital to home' family caregiving. "What is the level of caregiving coverage that is going to be needed?" Followup questions could include,  "Will the caregiving duties required 24 hours a day, 7 days a week?"  "What are the specific caregiving tasks that our household will be expected to perform?" "What supports are going to be provided to our household to take on the responsibility of this care?"   "If we can't care for our family member, where will they go for their caregiving?"  "What are our family member's likely health and wellbeing outcomes if we take care of them at home or if we cannot care for them and they have to go somewhere else?"

  It is very difficult to put a value on something that is not measured, traceable or accountable. That is the situation with family caregiving. The entire economy and healthcare system is depending on family caregiving infrastructure for their continued existence. One of the key arguments supporting such drastic shift in healthcare infrastructure from institutional caregiving to family caregiving is that "it costs less". However, there is no actual cost accounting research that backs up this assertion.  The work of family caregiving is unknown. We have circumstantial evidence of the negative impact of family caregiving on the health and well being of the families who provide caregiving beds and services in their family homes. We also have financial calculations showing the proportion of caregiving that is being carried out in family homes in relation to commensurate care infrastructure in institutional settings. We do not have any quantitative time / material studies that sh...

Family caregivers perform their work in a void of substantial system support. They guard their care recipients with everything they have, even as their own lives suffer from the expenditure of effort. It is time to process the time and finance numbers from August. We have held steady this month despite the absence of family members on vacations. I continue to learn what I can manage, what I can survive, and what I can transcend. This is work that rarely lasts longer than 24 hours and can disappear  within 5 minutes. For example, yesterday I loaded the dishwasher and got it started, wiped down the counters and emptied the compost. Mom was sitting in her chair watching the tidy up. Once I was done, I asked Mom, "How about a cup of tea?" "Oh, yes!" she replied enthusiastically, "That would be wonderful."  I put the kettle on to boil, pull out a clean mug from the cupboard, load it with a tea bag, sugar and milk. I checked the clock and realized it was already...

  "Women average about 52 minutes per day caring for children and other family members..." From https://fortune.com/2023/08/14/women-caregiving-missed-pay/ Based on this average amount of caregiving per day, and rated at $14.55/hr (per child-care workers or home health aides), the article states that family caregiving is worth approximately $4,600 per year. The article does not state whether this is per care recipient (ie. per child or a multi-generational household). However, the metric that family caregiving only requires 52 minutes per day does not explain the negative impact of family caregiving on socio-economic vulnerabilities for caregiving families. It makes no sense. We need a time / materials study of family caregiving homes to quantify the work that is being carried out day to day to provide caregiving beds for family members who cannot fend for themselves. We need to understand how much time, effort, expenditures, and lost opportunities need to be factored to unde...

  It takes a village to raise a child. It also takes a village to care for village members who can no longer fend for themselves. It is anti-social to leave the care of a family member who cannot fend for themselves to one isolated family caregiver. It undermines health outcomes for our society when we accept this approach as a default solution. Valuing care as an integral, essential component of our healthcare system needs to include valuing family caregiving. Institutional healthcare providers are placing increasing dependence on family caregivers to make up caregiving infrastructure deficits that are arising from institutional and government care mismanagement, negligence or system deficiencies. Whether the negative socio-economic impacts of family caregiving can be attributed to mismanagement, negligence or system deficiency, the solution lies in understanding the systems imperative to improve outcomes for family caregivers. When we value care, when we value family caregiving, ...

Everyday I read of the anguish and despair of family caregivers suffering unbearable stress because they feel they are failing their families and their loved ones in their caregiving mission. Today I read the post from a young family caregiver (27) who was in so much pain they tried to take their own life instead of attempting to continue caregiving their grandmother (75). When the suicide attempt failed, they abandoned their grandmother to save themselves. To this young ex-caregiver I say, "You needed to save yourself in a situation that was destined to fail." To the healthcare system that put this young family caregiving in this situation, I say, "Shame on you." I read other posts from young and middle age family members asking if they should move their family member in with them to take on family caregiving. Or if they should move to their family member's home to help them out. To these potential family caregiving families, I say, "You need to balance yo...

SOLITARY CONFINEMENT, which is also referred to as segregation, isolation or separation, is the practice of confining an individual in custody to a cell by themselves for 22 hours or more a day, often for prolonged periods at a time.  (Google Search 2023 08 01) I read the anguished, despairing dispatches from caregivers in the frontlines of family caregiving. They are isolated, lonely, exhausted, depressed, frustrated and anxious.  In the United States, NBC News reported introduction of a bill that would broadly ban the use of solitary confinement in federal prisons, jails and detention centres by a coalition of House Democrats last month (July 2023). The measure seeks to codify into law the limitations on when and how long someone can be left isolated in a cell. In some cases the family caregivers are part of a wider family system but they do not have adequate supports from other family members and cannot afford to hire replacement paid care (in my local area the rates are $4...

  I am hoping someone can explain the economics of family caregiving to me. Do not misunderstand me. I am one of the lucky ones. My care recipient is a delightful person. She is not difficult to look after. That is, once you have become practiced at this work: Almost every morning is not your own - what is 4 / 31?