COVID-19 adds to challenges for those who care for ailing loved ones.
When Anwara Siddique’s mother, Naroon, was diagnosed with Pick’s disease a decade ago, she very quickly lost her memory, speech and the ability to care for herself. For years, Naroon paced the house for hours on end, and once she could no longer walk, she rocked back and forth in her wheelchair grinding her teeth so loudly it could be heard throughout the house. As Naroon’s primary caregiver, Anwara has provided for her every need since day one, putting her mother’s care ahead of her own needs.
For caregivers, sleep is often elusive. “Even though I fall asleep,” says Anwara, “I’ll have a dream that she is falling down, and I wake up to check on her. I need to go outside the house sometimes in order to relax, but even when I’m outside, I call all the time to make sure she’s okay.”
Anwara is one of four unpaid family caregivers recognized this year with the Heart of Home Care Award from VHA Home HealthCare (VHA), a not-for-profit charitable organization whose team of personal support workers, nurses and rehabilitation therapists work directly with clients and their caregivers in the home to support the client’s independence. While many unpaid caregivers like Anwara see the care they provide as simply part of their duty as a parent, spouse or child, this unpaid labour often comes at great health, social and financial cost. And the coronavirus pandemic has added to the tab.
“For many unpaid caregivers, supports in the community provide a lifeline to help manage the demands and the loneliness that come with caring for a loved one at home,” said VHA’s President and CEO Carol Annett. “On top of the COVID-19 stress we are all feeling, losing access to community services and dealing with social isolation can be particularly difficult for caregivers. During the first wave of COVID-19, many families also put their in-home support services on hold out of an abundance of caution, adding further stress for many, even though we now know that home is the safest place to receive care,” Carol added.
Tragically, Anwara’s situation is very common. About one-quarter of Canada’s population identifies as an unpaid family caregiver. In 2018, Statistics Canada estimated one in four people over the age of 15 care for a family member or friend with a long-term health condition, a physical or mental disability, or problems related to aging. Almost half (47%) of them, like Anwara, provide care to a parent or in-law, while roughly 600,000 (8%) care for a child with exceptional care needs.
“Unpaid caregivers are integral to our health care system. They not only help the individual receiving care to live with dignity within their home where they want to be, but their high-quality unpaid care translates to about $25 billion in cost savings for the country’s health system,” says Carol. “Our VHA care providers see this first-hand every day.”
Witnessing the vital role family caregivers play and seeing how rarely that role was acknowledged in the broader health system, VHA launched the Heart of Home Care Awards 17 years ago. The awards recognize unsung heroes who go above and beyond to provide spectacular care to a chronically ill or disabled loved one, and they shine a much-needed public spotlight on the role caregivers play in propping up our health system. While the COVID-19 pandemic prevented the traditional award event from proceeding in 2020, recognizing the four winners remained a priority for VHA:
Caring with Compassion Award
Anwara has been the primary caregiver for her mother, Naroon, for a decade. Naroon’s degenerative condition, Pick’s disease, has left her unable to speak or move independently. She is fully dependent on Anwara for all her needs to live. Anwara maintains a cheerful disposition as she prepares and feeds her mother pureed meals, as well as managing bathing and toileting, repositioning her mother in her bed, and more. Compassionate and devoted, Anwara anticipates her mother’s needs and responds instantly.
Young Caregiver Award
This 13 year-old has served as a caregiver to both his father, Allan, who suffered a stroke four years ago and his mother, Maureen, as she survived a cancer diagnoses and double masectomy surgery in 2019. Extremely caring and wise beyond his years, Aaron provides day-to-day care, such as helping his mother in and out of bed, gathering her medical supplies, tying her shoes, and preparing food for both parents, as well as offering words of encouragement that have helped Maureen through many dark days.
Creative Caregiver Award
Inspired by her parents’ role as foster parents while growing up and her own experience raising a son with a disability, Kari and her husband have fostered and/or adopted 10 children with disabilities and health issues. Always managing a full house, Kari’s commitment to love, encouragement and problem solving have helped these children surpass the expectations of doctors and other professionals.
Caring and Giving Back Award
Dianne is caregiver not only to her husband, Brian, who has Parkinson’s disease, but to many in her community of Iroquois, Ontario. Wanting to support Brian’s independence, Diane decided to form her own support group to offer a positive group learning experience for others like them. She leads weekly exercise classes for 12 attendees with Parkinson’s, which have continued virtually during the pandemic, and coordinates speakers and other programming for the group. Full of energy and determination, Dianne continues to seek new ways to improve the experience of Parkinson’s for Brian and those who have come to rely on her group for support.