Bureaucratic Processes and Systemic Flaws

The bureaucratic process of applying for Long-Term Care Homes presented the flaws that exist with the process of application and acceptance. Since our family could not financially afford to keep my Dad within his community in Rama, we applied for Long- Term Care Homes located in the Orillia area in order to keep him close to family. The wait list for Orillia was up to three years, which is common because “thousands of people are on waiting lists for long-term care homes. As a result, people requiring long-term care (LTC) are confronted with a variety of ‘policies’ and ‘programs’ developed to ‘deal’ with these issues despite the legislation governing placement” (Meadus, 2013:1). One of the policies of applying for Long Term Care Homes is having a substitute decision maker for my Dad. The substitute decision maker is required in Ontario through the Health Care Consent Act when someone is deemed mentally incapable (Southwest Community Care Access Centre, 2013). My Dad was still making his own decisions, but I became the substitute decision maker, which is based on a kin-ranking process. Therefore, I had to obtain the consent of my Dad and the removal of decision-making power from Cecilia and my sibling to be the sole decision maker.

When trying to access counseling to deal with my Dad’s diagnosis, I was fortunate to find services by an Aboriginal health organization offered in London. Through counseling, I am able to receive guidance and a safe space to talk to a counselor who has professional experience dealing with Alcohol Dementia. In order to try to stop the trauma from affecting me negatively, I am accessing services that work from a wholistic, Indigenous approach to dealing with my emotions and coping as a primary caregiver. The benefits of

receiving counseling from an Indigenous approach is that Alcohol Dementia like addiction and mental health is,

understood in a complex, nuanced, and big picture way: not as an occurrence that ‘just happened’ or as a tragedy contained within a specific space or time….[T]he broader social structures within which all co-exist, must be understood as historically informed, as socially produced, and as linked to broad conditions of health and wellness, including mental health and

addictions realities, in Indigenous communities, particularly First Nations, in Canada. Indeed, as Indigenous peoples around the world have always argued, the treatment and rearing of children, and the way all aspects of childhood are understood and constructed, impact generations to come (de Leeuw et al., 2009:283)

My father not being an active part of my life because he used alcohol to cope with his own trauma has constructed my life history and now affects me while trying to process my role as a caregiver for a parent at an age where this responsibility is rare. I am trying to understand my Dad’s life-long addiction and have gained a more empathetic

perspective after hearing my Grandma and Dad’s life histories. But the complexity of not only dementia, but my Dad’s and my own Indigeneity, and his alcoholism brings stigma and shame and I do not have anyone to share my emotions and turmoil about these life altering changes.

Throughout my experiences, I have recognized that caregivers for family members with long-term illnesses are gendered. Consistently within research that has focused on those who become the permanent caregivers for family members diagnosed with long-term illness, women take on the responsibility (Aldous, 1990:44). This is present with my Dad’s diagnosis that Cecilia brought him home to provide care and I am the caregiver once he is relocated to London. The gendered role of caregivers has been examined and,

there is a substantive body of literature that raises concerns over the

exploitation of women[s] – unpaid labor. Aboriginal persons often prefer to utilize friends and the extended family for both personal (e.g. hygiene) and non-personal (e.g. transportation) services rather than turning to the Third Sector or the Private Sector ‘industries’ (Durst and Bluechardt, 2001:31). My Dad has refused care from third party individuals including Personal Support

personal care by taking him to his appointments and being present at meetings with his CCAC caseworker. The issue of unpaid labour connects to broader issues in that the lack of funding to aid families and individuals diagnosed with Alcohol Dementia means that the family is responsible for care. Providing care for my Dad is time-consuming,

financially straining and takes a toll mentally and physically. Since our family is already marginalized, have low incomes connected to the legacy of colonialism and lack of self- determination on reserves for health care services, the women in my Dad’s life have taken on the responsibility of his full time care.

This level of responsibility and emotional stress creates a high risk of the female caregivers becoming a ‘hidden patient’. As the primary caregiver for my Dad with no emotional or practical supports for Alcohol Dementia, I have developed covert and overt forms of illness (Medalie, 1994:164). The stress associated with trying to organize different services, planning for my Dad’s short term and long-term health and dealing with my own turmoil with the diagnosis, my health has been affected. Accessing cultural services through counseling has aided with the turmoil and I am using traditional healing in order to deal with my emotions towards my Dad for being an absent parent and for becoming his caregiver. Traditional healing will also be a way to approach my health wholistically and to have a safe space to discuss the effects of Alcohol Dementia within my life history.