A few years ago, I transitioned from a full time health care provider at West Lincoln Memorial Hospital to a high needs service user of the health system. This transition was, to say the least devastating. My health very quickly rendered me bed ridden due to three brain tumors diagnosed as Tumefactive Multiple Sclerosis. To understand how quickly this occurred, I worked full-time, rarely taking a day off due to illness then one morning when I went to work I was sent home due to emerging left sided weakness. The next day I was admitted to hospital to begin a six week course of investigations that included a brain biopsy.
I never returned to the career I loved, and within a three a week period I was paralysed along my left side with weakness on my right side as well. This meant that I needed help with every aspect of my daily living. Transitioning from a lying down position to sitting, from bed to wheelchair were monumental, sometimes insurmountable tasks. My children at the ages of 10 and 14 were thrust into the demanding and overwhelming role of caregivers. They were used to living in a home where expectations were few. I shuttled them to and from classes and activities as a working full time single mom. They were unprepared on every level for the tasks before them.
My treatment plan included a referral for a long term stay at the Shaver Hospital for rehab. As I was pushed up and down the halls in my wheelchair I could see the infectious disease placards that adorned more and more doorways I remember feeling distinctly vulnerable. I was concerned about my precarious health. A week before Christmas, I declined the option for further inpatient treatment and explored home care options to meet my needs.
When I returned home I was still in an acute relapse and recovering from my brain surgery. I was only able to stay awake for very short periods of time. My mother, father and children became my full time caregivers. At the time my mother was also caring for my elderly grandparents who were in their eighties. My children rose to the task of paying bills, doing laundry, doing groceries, meal prep and attending to my many needs. This in and of itself was devastating for me. I had been a strong independent, vibrant mother and now I needed help to complete even the smallest task. I worried about how this would impact my children and felt like a failure as their parent. I was supposed to caring for them, providing for their needs and protecting them. I was mortified by how little I was able to do and often took safety risks to do things myself attempting to attenuate some of the burdens they were experiencing. Without knowing it, this placed a further burden of worry on them. They became my caretakers, my confidants, and my cheerleaders.
Turning to community programs for support, my kids benefited from Big Brothers Big Sisters, the YMCA and other such programs as a social and recreational outlet. These programs provided them with an outlet and an escape from their responsibilities but were not equipped to teach them the life skills they needed to be full time caregivers. Looking back, my daughter reflects that the hardest thing for her was feeling isolated from her peers who were unable to relate to the magnitude of responsibility she faced.
In attending Powerhouse Project Programming my children had the opportunity to connect with other kids facing similar challenges. They learned life skills that strengthened their confidence, self-reliance, and promoted safety and ultimately resilience. My son attended ‘Cooking with Care’ where he learned kitchen safety, safe food handling techniques, and meal planning skills in an environment that was fun and non-threatening. At the beginning, he didn’t know what the stopper for the kitchen sink was and in the end he was able to plan, prepare and clean up after a meal with safety and confidence. He learned self-care strategies in ‘Balance’ that taught him mediation, stress management and strategies for coping in challenging times. In attending these programs with others in his peers, their friendships deepened and they have become unfailing in their support of each other. They continue to use the skills they learned during program to support one another independent of the program.
The concept of being a caregiver in the minds of many people is reserved for PSW’s, nurses, and professional staff. If it is a leap for spouses to see themselves as caregivers it is an even bigger leap for people to see their children as such. The Powerhouse Project is ever aware of further marginalizing families and uses skill in accepting families, engaging in creative, fun ways to build skills, strength and resilience. By avoiding pathology driven assessment model the PHP is able to engage families breaking down barriers of fear and judgement. It is a leap for families to take to allow their children to be identified as caregivers. We cannot deny upward trend of caregiver needs with our aging population, but many families like mine are also facing challenges related to caregiving.
The PHP is a treatment that cuts through disease, diagnosis, and age to provide reinforcements within homes families and communities. So much of medicine is about applying the right treatment at the right time; getting that cancer diagnosed at stage 1 instead of stage 4, having the right medication, at the right time for the right problem. The conundrum of preventive medicine is that it makes it very hard to cost out what was avoided. What I can tell you is that the treatment you provided my kids came at the right time, at the right dose and saved health care dollars. It reinforced their growth and attentions in adaptive directions, strengthened their peer connections allowing them to be strong contributors in our community.
Knowing that my children have the support of the Powerhouse Project, the skills to keep them safe, and a community of peer support I have been able to rely less on CCAC home supports as my disease has taken me through several cycles in its relapsing remitting course. In a period of 18 months, three times I received medical treatment that caused side effects of fluctuating blood pressure, blood sugar and wildly fluctuating moods. These medication side effects were in addition to the severe changes in my physical capabilities. Through it all we managed without need for hospitalization and expensive specialized homecare services.
My children, my family and my community have benefited from the core teachings of the Powerhouse Project as demonstrated in their strength and resilience. My daughter is now attending the a Social Work Program in university and received scholarships from the Terry Fox Humanitarian Awards Program, the YWCA Woman of Distinction Award, the Billy Talent MS Scholarship and the Learning Matters Scholarship program. My son is attending grade 10 and plans to pursue a career in medical research. The resilience they demonstrate has been achieved with the support of the Powerhouse Project programming in their fledgling years. I only expect that the program will continue to evolve to meet the varied needs of Young Carer’s in our LHIN. I was pleased to learn that the Powerhouse project was an Innovation Award Finalist- for Meeting Community Needs through Integrated Care in 2009. The LHIN should be commended for its support of the emergent needs of caregivers in our community. Thank you for this opportunity to meet with you to share our family experience with the Powerhouse Program.