The Angry Caregiver

  I tell my story of family caregiving to make sense of the baffling experience of providing family caregiving infrastructure in an inadequately understood health system. It isn't that we begrudge the opportunity to take care of our frail, elder. It is that we cannot fathom the logic that puts both our frail elder and our family care infrastructure in jeopardy. The more successful we are at looking after Mom, the longer she lives and enjoys her life at home. The longer she lives, the more our family caregiving resources are depleted.  The work of caregiving is deeply personal and intimate. The caregiver is providing support for the body, mind and spirit of their care recipient. They are managing the medical, social, familial, legal, financial, and physical dimensions of the world of their care recipient. They are entrusted with this care, often with inadequate preparation and insufficient supports. There is a catastrophic disconnect between government and health system leaders...

Work in progress - dispatch from the front line. Today I am going to open the tax credit application form from the Canada Revenue Agency for families providing caregiving to family members unable to care for themselves. This is the t2201-22e form - Disability Tax Credit Certificate. It is my first time going through the form. My instructions from Mom's GP is to fill out my notes for the information he will need to complete his section, too, as I am the one who has the most information about what Mom needs on a day to day basis. This is a 16 page form. Part A - Individual's section asks for information about the person with the disability and the person claiming the disability amount. Part B - Medical Practitioner's section asks for information describing the severity and frequency of the care recipient's impairment Vision Speaking Hearing Walking Eliminating Feeding Dressing Mental Functions Cumulative Effect of Significant Limitations Life Sustaining Therapy We started...

 

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...