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...

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...

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...

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...