family caregiver

My whole experience: Olivia’s young carer journey

Catherine Monk-Saigal

olivia
Olivia Wyatt, 17, is a young carer from St. Catharines, Ont.

As long as she can remember Olivia Wyatt has been a caregiver to those around her. She didn’t grow into it and it didn’t come naturally—it was just always part of her.

“It’s hard to remember it coming at all,” says Olivia, 17, “It was just always there. Caregiving was my whole experience.”

Olivia’s caregiving experience is unique due the fact that she is a young carer. Young carers are children, youth, and young adults who provide care and support to a family member with a health issue. It’s estimated that approximately 17% of Ontario caregivers are between the ages of 15 and 24. They are often referred to as an invisible population, as very few people are aware of their situation.

The eldest of four siblings, two of which have Autism and ADHD, Olivia has been the long-time right hand for her mom Lianne, a role which intensified when Olivia’s father Tim was also diagnosed with Autism and ADHD in his 40’s and who suffers from debilitating migraines as a result.

“Olivia was my gift from the universe and my gift to the universe,” says Lianne.

Lianne describes Olivia as fiercely protective of her family, noting that many of Olivia’s friends growing up didn’t understand the need for Olivia to help her brothers off the school bus, or her responsibilities to be at home to assist her mom.

Like many young carers, Olivia has maturity beyond her years, describing her biggest caregiving challenge during high school as simply “staying sane.” To do this, Olivia found solace in drama, which helped to alleviate her anxiety, and also turned to books as a way to escape.

Olivia also found support through the Powerhouse Project, an inter-agency strategy that offers activities and programs for young carers in the Niagara region and Haldimand and Norfolk counties. The Powerhouse Project gives young carers a much needed break from their regular caregiving duties and connects them with young people in similar situations.

“[Powerhouse] is a place where you can just ‘be’ and there are other people who understand,” says Olivia.

Recently eight young carers from the Powerhouse Project, including Olivia, took part in a one-week digital story telling workshop hosted by The Change Foundation in collaboration with Project ReVision, a program of the University of Guelph. Armed with cameras, laptops, and recording equipment, each young carer had the chance to learn and create their own short film about their caregiving experience.

Lianne says this experience opened Olivia’s eyes to a new medium of expression and storytelling.

Now Olivia finds herself at the start of a new experience. After graduating from Laura Secord Secondary School in St. Catharines with a glittering scholastic record (though Olivia is compelled by modesty to mention two B’s in her Grade 12 year), she has just started her first year at Brock University in the Concurrent Education program.

However, with this new opportunity to start making a life on her own, Olivia is also debating whether she wants to caregiving to be part of professional life as well.

But if possessing this foresight, thoughtfulness, and poise say anything about Olivia, it’s that she’s a dynamic young woman and carer with a bright future ahead of her.

For more information on young carers and to watch other videos from Powerhouse Project youth, click here: www.changefoundation.ca/ontario-young-carers.

Strong Engagement, Strong Research: The Keys to Our Approach

 

CFooks 2Just as we welcome a new season and warm weather returns, we at The Change Foundation (TCF) are feeling very energized as we move into new phases of our work.

Doing a deep dive into family caregiver issues through grassroots engagement and research has underscored for us just how imperative it is that we continue to focus on integrating and supporting family caregivers as a way to improve the patient and family experience.

At TCF, we believe that this mix of strong engagement and strong research also allows for a unique, more inclusive perspective on how change can be achieved in health care.

Look no further than the past six months as an example, which has seen us release a number of research publications, reach out to both family caregivers and health providers (click to learn more), and continue to share our knowledge at a number of conferences and stakeholder meetings. These kinds of activities are the crux of our approach to evolve Ontario’s health care sector.

Another good example can easily be seen with our Shedding New Light report series. Researched and written by family caregiver Sara Shearkhani, Shedding New Light offers a glimpse into Sara’s caregiving journey, and her struggle with evolving personal responsibilities. These reflections stand alongside a literature review on the stages of caregiving. Overall, the reports serve as important examples of how evidence and lived experience can be used to tell a meaningful caregiving story.

Although it’s encouraging to see evolving literature like this, the more we learn, the more we understand just how much work still needs to be done.

This is especially important from a policy perspective. In this issue’s commentary piece, Lori Hale and Stephanie Hylmar bring forward four key emerging themes for increased stakeholder consideration and action, as identified through The Caring Experience project. These themes are directly informed form our engagement with both family caregivers and Ontario’s health providers and serve as an important starting point for TCF’s next phase of strategic work.

Furthermore, at the launch of our latest report, A Profile of Family Caregivers in Ontario, we issued a call to action for ourselves for the next phase of our strategic plan. Coinciding with the release of that report, dedicated planning has started at TCF to develop the next round of funding opportunities and partnerships aimed at improving family caregiver experiences.

Now is the time for introspection for The Change Foundation to fully realize these opportunities. More importantly, it’s an added chance to ask ourselves how we can continue to be Ontario’s neutral sandbox for positive health care collaboration.

Whatever funding opportunities are developed, they will undeniably involve both family caregivers and health providers as equal partners, with a focus on creating made-in-Ontario solutions that will lead the way in improving caregiver and patient experiences in the province.

With this approach, we can continue to be the catalyst for change in Ontario health care.

 

Lisa and Chase: A Caregiving Story

Lisa and Chase Cann, family caregiver
Lisa and Chase Cann

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 Lisa-and-Chase, family caregiverof 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.

Lisa & Chase The Change Foundation, family caregiverFor 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.

Watch Hot Talks on Health with Heléna Herklots

On April 27, 2016, Ontario policy makers, health professionals, family caregivers, and patients met to hear Heléna Herklots, Chief Executive of CarersUK speak on the development of supportive policy for caregivers in the United Kingdom and what Ontario can learn from the UK experience. Family caregiver and author Katherine Arnup, PhD, also addressed those in attendance with a moving response based on her own experience providing care for her sister and parents.

If you were unable to attend this latest edition of Hot Talks, a full video and a selection of photos from the event is available below.

Webcast Video

 

Shedding New Light: One Caregiver’s journey

In March 2015, The Change Foundation formally released Out of the Shadows and Into the Circle, its 2015-2020 strategic plan focused on improving the experiences of family caregivers in the Ontario health care system and their interactions with health providers.

The first year of the strategic plan outlined a comprehensive period of research into the existing literature, legislation, and policy documents that currently exist on the stages and experiences attributed to caregiving. As part of this process, Sara Shearkhani worked with The Change Foundation to complete a literature review to summarize and synthesize the last two decades of caregiving research, as well as to reflect on her own experience as a caregiver.

Sara’s experience as both a researcher and a family caregiver helps to bring a unique perspective to the roles and responsibilities inherent in caregiving. Her reflections present a poignant picture of someone wrestling with the evolving real-time experience of being a caregiver, while also finding answers and insight in academic, peer-reviewed literature.

Shedding New Light: One Caregiver’s journey is the result of Sara’s work. It features an executive summary of the comprehensive literature review completed by Sara as well as her reflections on her own caregiving journey. Together, the papers that make up Shedding New Light provide a balanced and comprehensive standpoint on how the role of caregiving can be viewed.

The Change Foundation gratefully acknowledges and thanks Sara for her dedication and thoughtful approach to this work.

Papers and Related Resources

For more information, or to access the full literature review, please contact:

Communications at info@changefoundation.com

Called Into Action: Katherine Arnup’s Caregiving Journey

Family Caregiver and Author, Katherine Arnup
Family Caregiver and Author, Katherine Arnup

For author and academic Katherine Arnup, her journey as a family caregiver started with a promise to her sister Carol.

The promise had been made in 1990, after Katherine’s mother, her family’s main caregiver and support person, suffered a debilitating brain aneurism.

“She had always been the caregiver.  You always knew, even as an adult, you could call her if you had a cold or were sick and she would care,” says Katherine.

Spurred on by this devastating event, and their close sibling relationship, Katherine and Carol pledged that if either became seriously ill, the other would act as caregiver.

“It felt real to say that,” says Katherine, “but I didn’t expect to be called into action quite so soon.”

Just seven years later in January 1997, Carol would be diagnosed with cancer for a third time, and Katherine quickly took on the role she had promised.

Thanks to a sabbatical from Carleton University, Katherine was able to shuttle herself between her home in Ottawa and Toronto on a weekly basis. There, she organized care, prepared food, and spent time with Carol, one of her closest friends.

“I felt like I knew what Carol needed,” says Katherine, “It was our close connection and the love that I had for her that enabled me to clear away everything else in my life so she could get what she needed. Sadly, Carol would progress to end of life care by April, ultimately dying in July 1997.

Through this experience, Katherine found herself occupying multiple roles for her sister. Not only was Katherine one of her sister’s main sources for care, but she was also a confidante and advocate, roles that may not be evident to the broader public.

“For me it just seemed natural,” says Katherine, “However, if people haven’t been a caregiver for someone, I don’t know that they realize they’re going have to advocate in the hospital.”

“[Their loved one] is going to need someone who is willing to go fight for them and raise their concerns and their interests.”

However, Katherine was also forced to face her longstanding fear of death as part of her caregiving journey.

“Death had been scary in the abstract,” says Katherine. “But I knew that I needed to be up for it to be able to help [Carol] and be with her.”

To overcome her fear, and to reassure Carol, Katherine read as much as she could on death and dying, as well as anything on her sister’s disease. Nearing the end, Katherine also found support from Carol’s palliative care nurse, who guided her through Carol’s last days and hours.

In terms of her own health, Katherine made a conscious effort to have dinner with friends in Toronto regularly, and seek out support from friends and family in Ottawa, including her young children.

“[Self-care] was challenging because I had so much on my plate,” says Katherine, “But I knew I needed to eat and I knew I needed to see people to get support.”

Today Katherine is dedicated to sharing her experience with caregivers through lectures and her book “I don’t have time for this!A Compassionate Guide to Caring for Your Parents and Yourself.

“I wrote it largely to offer support and help to caregivers and it draws on my experiences caring for my sister and my parents,” says Katherine.

Now a volunteer at Ottawa’s Hospice at May Court, Katherine says the main lesson she’s gained through her caregiving journey is to provide dignity and respect for those you care for.

“It’s important to give the person you care for as much dignity and respect you can. They’re looking for a little control over their lives as they lose a lot of it,” says Katherine.

“It’s the little things that count.”

Katherine Arnup, PhD, is an academic, family caregiver, life coach, and author of “‘I don’t have time for this!A Compassionate Guide to Caring for Your Parents and Yourself. She will be one of three speakers at The Change Foundation’s Hot Talks on Health event on April 27th.

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