Lisa and Chase: A Caregiving Story
Meet Chase. He’s a dare devil. He thrives on adrenaline. No roller coaster is fast enough. He lives for excitement, sometimes waiting at the end of his driveway to wave at all the drivers going by, hoping that they’ll honk their horns in return.
When you pictured Chase, you likely didn’t see a teenage boy in a wheelchair who is non-verbal. Chase was born with cerebral palsy (CP) and needs round-the-clock care.
Now, meet Lisa. Lisa is Chase’s mom and his full-time family caregiver.
From the day that Chase came into Lisa’s life, she has been constantly monitoring and managing Chase’s chest and breathing, contractures and skin integrity, due to his spastic quadriplegia. To help with this, he has a G-tube to vent him and needs lots of re-positioning throughout the day and night.
And, seven years ago, he had intestinal failure which no one expected him to survive. He did, and now his day-to-day care is much more involved. He is TPN dependent and runs an IV for 23.5 hours a day, only unhooked for bathing. The femoral line is in his groin which takes constant monitoring and hyper vigilance with dressing changes once a week. It also means he often has belly pain especially at night.
To most, Chase’s daily caring needs seem overwhelming. But Lisa has a different perspective, “Chase is on this earth for a reason, and I just want to help him enjoy his life and bringing meaning to it.”
Lisa’s caregiving journey hasn’t been an easy one. It’s been full of ups and downs and a never-ending commitment to advocating for the services and supports that Chase needs.
It has taken a financial and physical toll. Based on her caregiving demands, Lisa essentially gave up her career. Lisa wears wrist braces at night from the wear and tear of lifting and caring for him. And, unsurprisingly, she rarely gets a full night’s sleep.
Walking through Strathroy’s small downtown, it doesn’t take long to realize that Lisa and Chase are mini celebrities in their own town. They are shining examples of how one person’s challenges can benefit many others along the way. Put simply, Lisa and Chase are catalysts for positive change.
Take the accessible playground near Chase’s house. Lisa and her husband were on the planning committee that got it built. Or consider the cadre of nurses and PSWs who have provided home care to Chase over the years – they have all gained skills in how to support and care for people with complex health conditions. And probably most importantly, Lisa and Chase have paved the way for many others to have access to self-directed care.
For many years, Chase’s home-based care was coordinated by their local Community Care Access Centre (CCAC). Beyond the administrative challenges of not being able to coordinate care directly with care providers, it also meant that Lisa and her family were opening their home each day to an always-changing group of people. To complicate matters, not all the providers had the skills required to address Chase’s complex needs.
Lisa spent many hours fighting to get self-directed care so she could choose and coordinate which providers care for Chase. “It’s changed our lives,” Lisa explains, “I feel like I have control over our lives for the first time in a long time.”
When you ask Lisa and Chase what keeps them going each day, Lisa is quick to respond, “Happiness and love.”
And when you meet Chase and spend a bit of time with him, the happiness and love he feels comes shining through.