A look at multi-generational caregiving
By Mary Bart
Men and women, and all age groups—from kids to seniors—are taking on responsibility for providing care to a family member. Here are some facts and real-life stories that will give you a snapshot of the reality.
Children and teens
Until recently, these youngsters were known as “invisible caregivers.” They can range in age from three to 18 years old, and provide significant amounts of ongoing care to a family member such as a sibling, parent, aunt or grandparent. The people for whom they care may suffer from health issues such as substance addiction, mental illness, a chronic or life-threatening illness, or a physical disability. Young caregivers help with daily activities such as eating, dressing, hygiene and taking medications. They may also often have added responsibilities to help navigate the healthcare system while also being the family translators with banks, doctors, lawyers and drugstores.
A study by The Vanier Institute of the Family titled “Young Caregivers in Canada: The Hidden Costs and Benefits of Young Caregiving” showed that 12 per cent of high school students in Vancouver, ranging in age from 12 to 17 years, were identified as young caregivers. The Vanier study noted: “These young Canadians play an increasingly essential role in the maintenance of family and community well-being. They fill in caregiving gaps and help meet the needs of family members recovering from illness or injury, managing a chronic, episodic or progressive health condition or mental illness, or at the end of life.”
Canada has lagged behind other countries such as Great Britain, New Zealand, Australia, Africa, Malta, Japan and the United States in recognizing the value and needs of young caregivers; however, new Canadian resources are now available, including a Toronto Hospice program called “Young Caregiver Program” and a video on YouTube called “Lucky: The Young Caregiver Rap.” Let’s meet a few young caregivers.
Meet Sarah and Hussain
Rarely have I met such wonderful teenagers as Sarah, 14, and Hussain, 15. They offer their unconditional love and support to help care for their mother, Sakina, who has needed help for more than 12 years to maintain her quality of life. She has a degenerative muscular disorder called cytoplastic myopathy, a disease related to multiple sclerosis. Because of this condition, she needs to use a ventilator to breathe, but is mobile thanks to her wheelchair.
When I met Sarah and Hussain in their home, I was amazed at how quiet, humble and very modest they are about their daily heroic efforts to help their mom. They help Sakina to get dressed, help with feeding her, help with her general hygiene needs and then, at the end of the day, help Sakina to get ready for bed.
“It’s the smallest things that sometimes mean the most to me,” says Sakina. “Even rolling me over in bed is a huge help, and they willingly do everything to make my life more pleasant. I am thankful every day for such wonderful kids.”
In 2007, when the breathing tube in Sakina’s throat came dislodged, Sarah—then just eight years old—cleaned the blockage herself and reinserted the tube back into her mom’s throat. This pure act of love and bravery saved Sakina’s life.
As I drove away from their home, I kept thinking about this wonderful loving family and especially these two young caregivers. Their maturity, impeccable social skills and manners and, of course, their true love for their mother were clearly evident.
Eight-year-old Willow is a tremendous caregiver and big sister to her two younger brothers (ages five and three), both of whom have autism. Willow proudly and willing assumes her responsibilities by helping to teach her brothers new words, social skills and imaginative playing. Willow’s mother is very proud of her daughter and says: “Willow keeps an eye on them to make sure they are safe. My sons are truly lucky to have a sister like her, and I am truly blessed to have her as my daughter.”
Younger adults who care
I often have the opportunity to meet young adults who are the primary caregiver for their grandparents. According to Susan Newman, author of Under One Roof Again: All Grown Up and (Re)learning to Live Together Happily, “People are realizing that family members are the first line of support when someone needs help.”
There are a variety of reasons why this caregiving relationship is on the rise. There are significant economic advantages to both the grandparent and the grandchild, including shared household expenses, less need to hire outside help or healthcare agencies, and the simple comfort of knowing that the grandparent is in safe, competent family hands. Whether or not these young adults are paid a small salary as a primary caregiver, they consider it an honour to help. The idea of multi-generational living is quite common throughout the world, though it is less common in Canada. Barbara Mitchell, professor of sociology and gerontology at Simon Fraser University in Burnaby, B.C. says, “The norm in Canada has historically been small nuclear households. We’re seeing a rise in multi-generational families across cultural backgrounds. Immigration has shown us how other types of households can work.”
Kerri, 30, proudly and lovingly cares for her grandfather, Art. She takes her responsibilities so seriously that she agreed to move into his home in October 2011 so she could better to care for him, and now considers it her full-time job. Kerri thought it better to keep him in his own home, so she re-arranged her life for him. Prior to her moving in, Art’s health was declining rapidly and he was only expected to live a few months longer.
I had the opportunity to visit with Kerri, Art and Kelly (Kerri’s mother), and Kerri’s love and commitment to her grandfather were obvious. Part of her daily tasks include preparing his meals, general household duties and just being there when Art would like a cup of tea, a chat or a bacon sandwich.
Kelly lives quite a distance away; so visiting is often difficult and requires significant planning. She is very thankful to her daughter for caring for Art so well. Says Kelly: “I know my dad is in good hands, and that’s all I care about. I am very proud of my beautiful daughter. She is doing an exceptional job of caring for her ‘Gramps.’ ”
Art is indeed a lucky man to have such a wonderful, loving granddaughter!
Mary Bart is the chair of Caregiving Matters, an internet-based registered charity that offers education and support to people dealing with the declining health or death of a parent. caregivingmatters.ca
Tips for living in a multi-generational household?
1) Remember why you’re doing this. Keep in mind the initial reasons for setting up a multi-generational household. When conflicts occur, maintaining this perceptive will help you cope with the inevitable conflicts. A few examples of why families choose to live together include: • Caring for an elderly family member • Desire to share costs such as mortgages, utility bills, cars • Support for higher education • Relocating from another country with family to become familiar with the area, culture and language • Single parents unable to support themselves and their children • Unforeseen life changes such as divorce, death, medical issue or job loss.
2) Write a contract. This could outline joint decisions such as a determination of when the living arrangements are planned to end (for example, “Grandma will move out when the seniors home she is waiting for becomes available”).
3) Decide who does what. If there are care issues for a family member that need to be managed, outline what they are and who will manage them (e.g., who will manage meals, doctor appointments, legal and financial issues? Will the care be a team effort or will one person be the primary caregiver?).
4) Establish boundaries. This will help maintain limits and mutual respect. Key points of discussion might include: • kitchen, study area and bathroom rules • physical privacy boundaries (for example, bedrooms, reading areas, TV viewing) • relationship privacy boundaries (e.g., agreeing not to getting involved in an argument between a couple; agreeing not to discipline a child if their parent is living in the household).
5) Plan budgets. Money can easily become a topic that creates great stresses in any household. Decide before moving in together how the bills will be paid. This can be included in the written contract described above to ensure that commitments are kept.
6) Set aside time for meetings. Don’t be afraid to call a family meeting to clarify and discuss issues or problems that arise. Better to have a civil conversation than a screaming match when things get totally out of control!