Family Caregiver of the Year Award Nominee: Brenda Blais-Nesbitt

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Family Caregiver of the Year Award Nominee: Brenda Blais-Nesbitt

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Nominated by: Colleen Breen

Tell us about the nominee's caregiving story.
Brenda Blais-Nesbitt is the proud and passionate caregiver of her 25-year-old daughter, Nikki, who has severe physical and developmental disabilities that make her medically fragile and dependent on technology for survival. Through years of experience, borne from travelling the paradoxical journey of life’s fragility and loves’ unyielding hope, Brenda has learned ways of staying inspired, making decisions based on love not fear, and linking with people, including healthcare providers, who share her passion for children with special needs in order to make a difference, not only for Nikki, but for all children and young adults with special abilities.

From the time that Nikki was born with unexpected difficulties at birth, Brenda began her challenging journey to become the most empowered, knowledgeable, courageous, and hope-filled advocate and caregiver possible for her daughter. Through Nikki’s many brushes with critical illness, where the outcome seemed dismal, Brenda was there providing care for Nikki, both grounded in reality mixed with unbridled hope. Many times when Nikki has been a patient in critical care, she has been asked about limiting life-saving measures or even stopping treatment altogether. With each heart-wrenching experience, she considers what is best for Nikki, focusing on her quality of life and her potential for overcoming yet another crisis. She believes that Nikki will let her know when the fight to live is just too hard and her quality of life is not worth the fight, and, most of all, when her million dollar smile fades from sight. Until then, they both continue the journey of life, with an abundance of love and laughter.

When organizing and providing Nikki’s healthcare consumed more and more of her time, Brenda left her career behind to continue as Nikki’s steadfast caregiver. A career was always something that she was passionate about but, in those days, weeks, and years, that was put on hold...temporarily. Besides caring for Nikki each day, she single-handedly spends many hours organizing care, ordering care supplies and medications required to address Nikki's many multi-system needs, attending her medical appointments, completing medical documentation, and advocating for her needs with so many medical organizations that ask her to justify Nikki’s needs over and over again.

Yet, in spite of all of this, she remains positively committed and focused on providing Nikki with the best quality of life, knowing that someday, without warning, she may face her final moments with her precious daughter while being asked to make some impossible decisions about life-saving measures. And she knows that one day she will continue life without Nikki. Until then, she tucks those worries away and, with complete awareness and authenticity, they both live life fully alive.

Through Brenda's own significant health challenges and the loss of her marriage five years ago, Brenda has always demonstrated an unwavering desire to provide Nikki with the very best life possible; and she does this in so many remarkable ways. From experiencing the most imaginative birthday celebrations, donning the most creative Halloween costumes, participation in theatre, meeting her favourite celebrities and attending their concerts, and even being serenaded by an up and coming country star while in hospital, and just having fun times with friends like any other 25 year old would desire, Nikki lives life to the fullest every single day.

Recently, Brenda experienced the death of both of her parents within twelve days of each other. Even amidst her own heartbreaking loss, Brenda put her own grief aside temporarily to ensure that Nikki’s needs were addressed while she was traveled thousands of miles to say good-bye to her parents; twice in two short weeks. During her many weeks of mourning, Brenda was isolated from family support as most live in Alberta, thousands of miles away from her and Nikki. However, she has wisely encircled herself with close friends who provide mutual support and love in the challenging times and celebrate with her in the joyous ones.

Although Brenda has been very involved in her community and within the healthcare system as you will read in the following paragraphs, above all else, her meaning, wisdom, and inspiration is found in being a mother to Nikki; a young lady who brings infectious love and laughter to the world every day! And a smile like that can only be fostered by a mother who has been the most incredible caregiver, cheerleader, supporter, advocate, and friend to her daughter, helping everyone to overlook the disability and see the unique and beautiful person that shines from within. And these incredible qualities can only be found in a caregiving champion that is truly worth celebrating!

How does the nominee complement his or her caregiving responsibilities with their own needs and interests?
In the early years of Nikki's life, Brenda was able to juggle the responsibilities of caregiving and a challenging career in the busy office of a rheumatologist and neurologist. When Nikki's health became more frequently fragile and her care needs more intense, she left her career but she didn't abandon her life for the sake of Nikki's.

Brenda has always been acutely aware that she must take the time to take care of her needs so that she can be her own best person and so that she can better take care of Nikki as well. She began taking university courses with a view to one day completing her degree. She has attended retreats aimed at finding her own magic and discovering her best self. She has partnered with others who share her passion for children and adults with special needs. In doing so, she not only became involved in making a difference for many, she developed life-long relationships with people who "get it": who understand what caring for a child with medical needs and who want to enjoy life in the most inspired way. Through these relationships, she has traveled to conferences to share creative presentations about caring for a child with chronic health challenges, the paradox of living a life while navigating the road of palliative and acute care and helping health care providers to understand what families need from them to make life a bit easier. Sharing her story reinforces that she is not alone, that she is doing better than she often gives herself credit for, and helps her overcome her experiences of chronic sorrow and cumulative stress in the company of co-presenters who care.

She has taken steps to eat healthier, focuses on fitness, make connections with people beyond the world of caregiving; taking steps to focus on her dreams and making them come true. Most recently, she started Coaching for Caregivers Canada, in an effort to provide support and guidance to caregivers whose needs are often overlooked in their caregiving journeys. Although taking this step took incredible courage, this has been a goal of her for many years and is a natural fit for her personality, her skills, and experiences. And besides, she has learned to live with the uncertainty and ambiguity that comes with being a single parent, a sole care provider, and importantly, a woman who has a passion for life!

Tell us about the nominee's problem-solving techniques.
Over time, Brenda has become a very wise and resourceful advocate, care provider, teacher, and role model, learning about the various components required for caregiving; from community resources, medical procedures, pertinent healthcare challenges, potential solutions to healthcare barriers, and networking to hospital and community guidelines. When takes some of the challenges that Nikki has faced in the healthcare system, learns about potential ideas for change, and then advocates for revisions that can make a difference. This has led to her participation in many committees aimed at enhancing the transition of children to adult care, improving the awareness of healthcare providers on the needs of children with significant medical challenges, increasing resources in the community, and lobbying government organizations for a change in healthcare, as noted in the following paragraph.

How does the nominee use online resources or community services?
As a caregiver, Brenda has become an avid consumer of online and community services, based on need and interest. Nikki is supported by many community healthcare resources that Brenda has had to become familiar with over the years. She also has learned to be a very passionate advocate for the needs of her daughter and for all children and adults with special needs. Her confidence, awareness, and courage took years to develop as she discovered the many ways of advocating the complexities of healthcare resources, both online and in the community. Brenda will often say that, although she doesn’t have an official healthcare designation, she has a Ph.D. in Nikkiology, and that provides her with expertise that cannot be dismissed.

She shares her knowledge with others in many incredible ways! As Nikki grew older, Brenda became very involved in educating other caregivers, including healthcare providers and students, about unique needs of every child with severe physical and developmental disabilities, encouraging others to focus on the positives whenever possible. She was part of the first Family Faculty at her regional children’s hospital, teaching healthcare providers and students about the needs of children with health challenges and their families. There are many students, new healthcare professionals, and other caregivers who have benefited from Brenda’s willingness to share the challenges that she and Nikki have faced and overcome, the knowledge that she has acquired about caregiving, and the factors that buoy her when it seems that life is causing her to sink below the waves of heartache, disappointment, fear, and frustration.

She participated in the inaugural healthcare and caregiver collaboration aimed at enhancing the transition of children from pediatrics to adult healthcare services. She was a member of interview teams that triaged medical school applicants, always providing the perspective of the caregiver as each and every candidate was selected. She has been part of community organizations lobbying the government for housing, both respite and residential, and recreational needs of young, medically fragile adults. She has shared her strategies for navigating the challenging roads of illness while enhancing resiliency, advocacy, and self-care by presenting at conferences locally, nationally and internationally.

How does the nominee remain involved in his or her community (including online)?
Along with the many strategies noted in the section above, she often shares vlogs that focus on the joys of caring for an adult with special needs, along with some of the challenges too. Recently, she shares a vlog about heading out on a road trip to Florida, only to be forced to turn around and head home to deal with an issue with Nikki's feeding tube. Unfazed, she dealt with the issue, shared information with the caregivers at Nikki's respite home, and got back on the road to continue her journey after several hours of delay. She maintained a positive spirit and demonstrated her usual incredible resiliency for all to see. Her willingness to be vulnerable and authentic makes it easier for others to do the same, sharing their own personal stories with her. She also shares vlogs about enhancing life through strategies that promote spiritual, financial, physical, and emotional wellness. She truly works hard at making a life that matters for her, for Nikki, and for those who have the pleasure of traveling this road called life with her.




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