The Angry Caregiver

I saw this letter writing campaign on my Facebook feed today and I thought immediately about adapting something similar to work to implement system change to support unpaid family caregivers. https://www.wildernesscommittee.org/take-action/support-kwakiutl Let's use this method to set up a system for letter writing on behalf of unpaid family caregivers. If we don't speak for ourselves, our voices will not be heard.  There is a labyrinth of government, non-government and for-profit organizational entities whose livelihood depends on the work of unpaid family caregivers. In the meantime, unpaid family caregivers remain invisible in terms of accountability, accurate cost assessment (financial, mental, emotional, physical), appropriate support mechanisms and impactful, pressure-relieving support. We will need a list of provincial and federal elected representatives to receive these letters. We will need their addresses - snail mail and email. Our strategy could be to send our lette...

  We didn’t plan to become unpaid family caregivers. Forty-five years ago, as we plotted our careers for early retirement, we didn’t factor in taking care of our 92 year old, mentally ill, developing dementia, end stage COPD, arthritically disabled mother. We may not have had concrete plans at that stage of our lives, and we also did not know what caregiving was, what it meant to be a family caregiver, or what it meant to be an unpaid family caregiver. This is family life. This is the life of a family over decades. This is the end of a long life that waited many years to come home from the mental health group home system. We thought we were prepared for Mom to come home. We tore out the bathtub and installed a no barrier shower. We emptied out our basement suite and set up a new bedroom for Mom and a guest room for unpaid family to come and stay with Mom. We knew that Mom could not be left unattended for any extended length of time. We knew that Mom was too frail to continue living...

When we study the actual time and motion involved in family caregiving, I am sure we will find extraordinary caregiver resilience in the face of impossible circumstances.  This is why I find it infuriating when exhausted caregivers are told to "take care of yourself first". The problem with this instruction is that there is a hierarchy of priority for family caregivers. It is impossible to leave our care recipient in difficulty and expect to get the benefit of relaxing and recharging our over-taxed resources. When our care recipient is secure and comfortable, we can pursue our own self care knowing that our care recipient is not suffering. We manage our family caregiver operations in accordance to our own triage protocols. We are delivering healthcare, even if we are not governed by the same policies and protocols that ensure the safety and security of care recipients in an institutional setting. Family caregivers are providing healthcare infrastructure and services without a...

At present there is no quantified data demonstrating the work being carried out in family caregiving homes. We see the impacts of this work in caregiver burnout and emergency hospital admissions. We see the policies that contribute to caregiving crisis when patients are sent home through early discharge, hospital to home, and aging in place without adequate supports for caregivers accounted in the planning. "To properly support caregivers and care providers, public policy needs to consider caregivers and care providers as relevant partners in health and social services. This will require more than just a shift in perspective; it will require bold public policy solutions to address the problems facing caregivers and care providers."  https://canadiancaregiving.org/wp-content/uploads/2022/11/CCCE_Giving-Care.pdf We aren't going to be able to shift perspectives without quantified data from family caregiving homes. We need to show the impact of caregiving provided by families...

There is so much we can do to improve family caregiving outcomes, especially for young caregivers who are putting their time and energy into caregiving instead of building their fledgling adult lives. I detailed a version of this approach in my dissertation - the study we did was on forming self-sustaining communities of practice in teacher education so that new teachers could lead change in the profession with regards to incorporating digital technologies to enable, enrich and enhance learning in elementary school classrooms. The model is based on a theory of cognition that shows how collaborative learning experiences can build a sense of belonging and resilience in groups where individual work is carried out in isolation or in non-supportive conditions. The method utilizes a formal learning experience - a structured course - to create conditions for collaborative, active experiential learning.   These learning experiences are designed to accomplish three concurrent objectives: 1....

The practices and routines for daily living that kept me on an even keel before caregiving were not robust enough to keep me in good health during caregiving.  Learning to manage the work of caregiving is not the same as learning the work of self care during caregiving. When my care recipient moved in with me I was on a dual learning curve - managing the work of caregiving and managing my self care during caregiving. There is a third dimension of work during caregiving, and that is managing supports for both getting the work done for the care recipient, but also managing the supports to make time for self care away from the care recipient. Self care during caregiving could be understood as four dimensions of work: Work required to maintain health and well being of the care recipient; Work required to maintain health and well being of the caregiver; Work required to marshal supports to maintain the health and well being of the care recipient; Work required to marshal supports to mai...

 I have adopted project management frameworks and workflows to survive my caregiving mission. My training as a professional project manager is helping me and my family to mitigate (but not eliminate) the known risk of increasing socio-economic vulnerability correlates with our lengthening caregiving timeline.  The irony of this relationship - increasing caregiving socio-economic vulnerability / length of caregiving timeline - is that the length of our caregiving timeline is in direct relation to the quality of caregiving we are providing to our dear Mom.  The cost of the quality of care we deliver extends our caregiving timeline while causing longitudinal depletion of our soci-economic capacities and capabilities. It is a tough situation to be in.

We did not know what we were getting into.  We knew that Mom was aging out of her place in the mental health group home she had lived in for forty years. We knew that she had been assessed as mentally competent enough to become a resident in a long term care facility, if that was to be her next move. In 2016 Mom had a health crisis. She was losing weight and complaining of stomach pain. My sister and I assumed the responsibility of getting Mom's paperwork in order - Power of Attorney, Will, and Representation Agreement. She ended up in the hospital and was diagnosed with an ulcer. After she was released from the hospital she had a bad fall and had to go back in for an injured knee. At that time we learned that Mom would no longer be able to go up and down the stairs to her second floor bedroom. Luckily, the bedroom on the main floor of her group home was made available and Mom moved in and stayed another six years in residence. In late 2020 (Dec 16, 17) Mom had two falls in a row. ...

CCCE - Giving Care - An approach to a better caregiving landscape in Canada (2022) "To properly support caregivers and care providers, public policy needs to consider caregivers and care providers as relevant partners in health and social services. This will require more than just a shift in perspective; it will require bold public policy solutions to address the problems facing caregivers and care providers." If we are going to propose bold public policy solutions to address the problems facing caregivers and care providers, we really need to understand and quantify the work that is being done. At present there is no quantified data representing the work and cost provided by family caregivers when they take responsibility for providing a bed and care infrastructure to a loved one. There is no comparative data to look at the quality of care in-home compared to the quality of care in an institution. There is no longitudinal study looking at the life expectancy of loved ones ca...

CCCE - Giving Care - An approach to a better caregiving landscape in Canada (2022) It is confusing to use the name 'caregiving' to refer to both work and role. Caregivers (role) and care providers (role) experience caregiving (work) as a rewarding and challenging experience. What is the work of caregiving? emotional support to care recipients changing clothes providing transportation managing care networks preparing food The work of caregiving by family caregivers also includes: personal hygiene waste management, including medical waste housekeeping grocery shopping medical appointments, prescriptions, medical equipment nursing facilities maintenance facilities improvements relationship management: family, home support, home support nurses, family doctor, specialists groundskeeping transportation maintenance and repair banking, bill paying tax preparation and filing CCCE states, "For every hour of professional care, caregivers provide three hours of care to family and frie...

CCCE - Giving Care - An approach to a better caregiving landscape in Canada (2022) Key Definitions: Caregiving - providing help or care to another person (does not specify care as service and care as physical infrastructure); Caregiver - an unpaid family member, friend or other support for someone who needs care (the term 'care' is not specified to differentiate or include the provision of care infrastructure ie. bed, furnishings, room, facility, grounds, transportation, etc.); Care provider - trained and paid to provide care - does not specify paid care infrastructure ie. housekeeping, facilities, food / beverage, etc. Care recipient - person receiving care Double duty caregiver - unpaid and paid care service provider What I notice about these definitions is the lack of inclusion of the physical, material and technological dimensions of care - the conditions that provide infrastructure for care work to be executed. When we are talking about Giving Care, we need to ensure we ar...

Mom is reading and writing in her journal this morning. She enjoys reading her own writing. The first step is encouraging her to write out the date on the next empty page. Ideas to help Family Caregivers: 1. A system for automatic membership of Family Caregivers (ie. unfunded, not professional relationship) serving to support a loved one (aka. Care Recipient) so that membership benefits (necessary supports: financial, mental/emotional, physical, educational) flow to the Family Caregiver, they don't have to spend precious time looking for the support they need to do the work; 2. A national online portal for Family Caregivers (think "One Front Door") where they can log in and connect with community, practical supports, mentoring, and socially active educational opportunities; 3. Educational offerings the bring Family Caregivers together into active learning groups, so they can build relationships and build skills, knowledge and experience as a working group; 4. A national e...

This morning I am figuring out how to manage a new wound that has opened up on Mom's right ear.  It appears to be a pressure sore due to Mom spending so much time in bed lately, sleeping on her side. The fact that I have had no training to manage pressure sores is an indicator that there is no formal acknowledgement of the work I am doing. If Mom was in an institution, there would be a trained nurse taking care of this wound.  Why is it ok to have Mom home with me, but it is not considered necessary to train me to manage this kind of predictable condition?  Why, if she is in an institution, it is required that she be attended by trained staff who are paid for the training they have received and paid for the work they are doing? Why, because she is at home, am I left to attend to this wound management without any training?  Why am I not provided training as a matter of routine, knowing that I am taking care of an elder with a high risk for developing pressure injuries...

Mom is learning to use her iPad to have face to face conversations with her children. "I love to hear my children's voices". She is always calm after she spends time with one of her kids. Invisible no more. I am not angry at my Mom. She is aging and losing ground with each passing day. She is aging as gracefully and with as much good humour as she can muster. She works hard to maintain her independence, even as her strength declines, and she copes with more aches and pains. I admire my Mom and I am happy to take care of her. The fact is, though, that I don't have much choice. My Mom is utterly frail and vulnerable. If she was left in the care of an institution, she would not be able to defend herself, or activate necessary services on her own behalf. She would be a dependent of that institution, its policies, its governance, and the ethical and moral values that guide the employees that are paid to provide services to my Mom. My beloved Mother-In-Law was diagnosed wit...