Good morning. My name is Carmel Boosamra, and I want to thank you for this opportunity to speak to you today about my life experience as a caregiver to a person who lived with Parkinson's disease for almost 17 years.
When my late husband was diagnosed with Parkinson's disease, we both could not imagine what a long road, with many twists and turns, we would travel together.
First, I want to impress upon all of you that, as a caregiver, I have lived and witnessed the full spectrum of issues that a family unit must deal with when caring for someone living with Parkinson's. I watched as my husband, Frank, transitioned from a full member of society, being the owner and operator of a small business, to a person who was totally dependent on the support from a wide range of social agencies, and finally ending his days in a long-term care home.
I could never have realized that I would become a caregiver to a man who had been previously gregarious, good-humoured, and who lived life to the fullest. Frank's mobility declined rapidly--from walking on his own, to relying on the aid of a cane, to using a walker, and finally being in a wheelchair full time. I had to assume an ever-increasing role of providing for his daily functions, attending at his many medical appointments, and management of his daily medication, while working with his neurologist to figure out which medication worked best for his Parkinson's symptoms as they progressed. I negotiated and advocated with the local community care access centre for much needed home care, and I had a continual dialogue with the many community-based social agencies for support.
I juggled all this responsibility while working full time. Upon reflection, I now realize I suffered from caregiver burnout, but during this period I was in survivor mode. I would venture to say that's a common theme for anyone who is or has been a caregiver.
After some five years, it became clear to me that I no longer had the ability or stamina to provide moral and physical support to my husband, who by now was displaying cognitive decline and for whom medication was fast becoming ineffective. I cannot state strongly enough the stress I felt each day as I left for work, knowing that my husband was on his own, and praying that he would be safe in the home.
I had to make the most difficult decision that it was time to move Frank to a long-term care home. For the next five years, I watched helplessly as he continued to decline cognitively, developing Lewy body disease. With the loss of his ability to communicate verbally, along with all the characteristics of late-stage Parkinson's, our marriage was now predicated on my daily visits to feed him and hold his hand.
In all of this there was the underlying burden of economic impact on our lives. Early on, my husband and I had to make the difficult decision to give up his working life and rely on his Canada Pension Plan disability benefits and my salary to meet our daily living expenses. There were numerous medical expenses that were not covered by provincial health plans or third-party insurance. I was always aghast each year at tax preparation time when I saw the amount of medical expenses there were to claim. Out-of-pocket expenses for such things as daily living aids, mobility aids, dictated we could not afford my taking a leave of absence from my employment, as some of the costs of these were covered through my employment medical insurance plan.
The stress of caregiving had a very substantial cost to me personally, in that two months after my husband's death I was diagnosed with invasive breast cancer. That stole the next year and a half of my life. I mention this because I had seen a very visible sign that something was wrong with my body earlier that year, but I ignored it and did nothing because I was so focused on my husband's needs.
My experience as a caregiver to someone living with Parkinson's is not all that different from others who are caring for someone. The family unit is profoundly affected when one member is diagnosed with Parkinson's because it means they must navigate the medical system to ensure the person receives proper diagnosis and care, as well as managing all the symptoms of Parkinson's and finding coping mechanisms to help ease the impact on daily living.
It causes the family to jump with both feet into a medical system that is not doing a good job of diagnosing and caring for the Parkinson's population. There is the lack of a clear, multi-disciplinary approach to managing this disease, and health care professionals receive little education on Parkinson's.
I now know there is a grave misunderstanding in the general public and the medical profession about this disease. This is why I have dedicated so much of my personal time to advocate for people living with Parkinson's. I want to effect change of attitudes in government policy-makers by educating them to the disease and its associated needs.
I am excited about our proposed brain strategy that seeks to address some of these issues: integrated care; caregiver support; public education and awareness, just to name a few.
It is my hope and dream that we will see this brain strategy come to fruition. It will profoundly ease the burden and provide hope to so many Canadians living with a neurological disease.
It would be the ultimate way to honour the memory of my late husband.
Thank you.