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.
No comments:
Post a Comment