Color & Control:

Young caregivers shoulder the burden

By Pat Irwin

When you think of “caregiver”, do you think of a nurse or a Personal Support Worker? An adult daughter? Maybe son? How about a teenage grandchild?

Unbeknown to most of us, there’s a hidden army of 1.25 million young Canadians between the ages of 15 and 24 who provide between 14 and 27 hours of care to someone else per week. That’s the equivalent to a part-time job! This unpaid care amounts to personal or system wide annual savings of $25,000–$50,000.

Of these caregivers, 54 per cent are female, 46 per cent male, and 61 per cent are aged 15-17. The majority of them provide care to a grandparent; 24 per cent care for one or both of their parents while 17 per cent provide assistance to friends and neighbours. Many (38 per cent) are in the same household with the person they care for but over half live less than an hour away. Many (45 per cent) care for more than one person. The majority (45 per cent) care for family members with physical or neurological conditions. Age related issues account for another 29 per cent.

Why are they providing care?
Usually, a family member has a chronic illness, disability (physical or intellectual), mental health concern, substance misuse, or socioeconomic factor such as a language barrier.

What sort of care do they provide?
As it turns out, personal care (e.g. grooming, medication administration and dressing) is at the top of the list, followed closely by practical support such as outings, transportation, activities. And, this is not to mention the tremendous social and emotional support these young people deliver.

At what price?
Some young carers seem to thrive given their energy, creativity, stamina, and focus on getting the right information and seeking advice, usually online. However, it comes at a cost according to research done at the University of Alberta’s Department of Human Ecology that reports that youth who care may have difficulty concentrating in school, spend less time studying, and often postpone further education. Other notes include the concern that a child or teen who provides care may find their own health suffering—35 per cent feel overwhelmed, 25 per cent say they are fatigued, and 7 per cent are depressed. While 85 per cent report a stronger relationship with the care receiver, 36 per cent acknowledge that they have less time to spend on themselves and their social life and limited time for physical activity. When asked, some suggest that they feel high anxiety levels and health professionals report risk of other mental health issues, eating disorders and drug use. Some young caregivers are also holding down jobs and report needing to arrive late, leave early or take time off because of their caregiving responsibilities.

Consider the positive impact
There are also lessons learned and benefits for youngsters who are providing care within their families or for friends, even though the community at large doesn’t often recognize or support their efforts. They gain life skills like:
• Practice running a household.
• Patience, creativity and resilience.
• Family bonding, often with another generation.
• Pride for being capable and responsible.

Let’s start with a few real-life examples that may make you look at situations in a new light. You may be looking at examples of a young caregiver needing help, without realizing it.

The youngest of five girls, Cora started caring for her grandparents who had raised them since the death of their parents in an auto accident. By age 15, Cora was overweight, had low self-esteem, and suffered from social anxiety. Unable to fit in with her school peers, Cora told herself that she was only fit to be a caregiver and slowly immersed herself in the world at home. (Studies have shown the health impact of sustained isolation is equal to smoking 15 cigarettes a day and that loneliness can increase the risk of death by 45 per cent.)

One night, while dispensing her grandmother’s pain pills, Cora thought, “why not end it all for both of us?” Shaken, Cora went to the school nurse the next morning and simply said “help.” The nurse called Social Services and got a home assessment booked. Shortly thereafter, the family was offered a personal support worker and respite care to give Cora a break. Cora’s sisters also met to figure out ways that they could get her out of the house and more physically active.

Things at school also improved for Cora. In recognition of her caregiving and homemaking skills, she was given a full credit in home economics, was a popular contributor to fundraising bake sales and excelled in first aid training.

Rosie had always been close to her much-older brother, José, now aged 45, who was born with cystic fibrosis and whose health issues had predicted a reduced lifespan. However, since their parents passed away, José now lives with Rosie, who, at age 26, is a single mom, juggling a career and a 5-year old.

While José’s personal care is well-organized, Rosie comes home at lunchtime to check in. She takes time off work to take him to specialist appointments to help him communicate. Rosie is a hard worker, but she is missing out on the networking and extra courses that would help her advance. She can never go out with colleagues, attend professional events or volunteer for overtime.

At a recent medical appointment, José spoke up for the first time and said he was fine and happy. He acknowledged Rosie’s hard work and said he was worried about her.

The doctor and Rosie chatted about her physical and mental health and advised her to contact her company’s employee assistance program to check her eligibility for childcare and caregiving assistance. With some free time in the evenings, she joined a local support group for single moms and started taking an accounting course to upgrade her skills.

Arjun’s mother was a “secret drinker”. And, while deeply ashamed of her illness, she relied on her teenage son after her husband, older children and friends left. Arjun was never able to bring friends home for fear of what he’d find.

Schoolmates interpreted Arjun’s secrecy as snobbishness, so he decided to be as eccentric as possible in his clothes, manner and communication. He developed anorexia and was often off school; food and liquor were delivered to the house so Arjun rarely went outside.

A neighbour finally intervened, as things didn’t seem right and for the first time, Arjun was open about his concerns and his own personal well-being. The local minister at the church where his family had attended a few years ago introduced him to Al-Ateen ( Social services sent a care manager to regularly provide oversight, nutrition counselling, and therapy for Arjun. He gradually started to get stronger, returned to school and finished his year. Next year he plans to go to college and live away from home while his mother receives ongoing homecare.

What is the common element of success in these stories? These young people were able to feel safe enough to self-identify as valued, skilled and responsible caregivers, who needed and deserved recognition and help. However, in each case, a turning point led them to seek support, and discover the resources, information and the support they deserved.

Pat M. Irwin, BA, AICB, CPCA, is the president of ElderCareCanada and a professor of distance learning at Centennial College.

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