Who cares for the caregivers?

More attention is being paid to mental health, but what about the impact on those caring for a family member or loved one who struggles with mental illness or has attempted suicide? Research shows that caregiving takes a toll — physically, mentally and emotionally, even financially. Imagine a City looks at the impact on families and how vital community-based supports and respite can provide much-needed care for caregivers.

By age 40, about 50% of Canadians will have or have had a mental illness

Informal caregivers provide critical support and care at home. And it’s becoming increasingly commonplace: As of 2012, 8 million Canadians — that’s 28 per cent of the population aged 15 and over — provided care to family members or friends, according to Statistics Canada.

But among regular caregivers, StatsCan found that 38 per cent of those who helped their child, 34 per cent who helped their spouse and 21 per cent who helped their parents reported feeling depressed. The Centre for Addiction and Mental Health (CAMH) also found that caregivers have higher rates of emotional and anxiety disorders, and are twice as likely as non-caregivers to use mental health services for their own problems.

Caregivers are not a homogenous group; caregiving runs the gamut from navigating the healthcare system and administering medication to providing personal assistance in the home, such as housework, feeding, bathing and toileting. In some cases, caregivers have to take time off work or quit their job — for example, to supervise a family member with dementia — which adds financial stress to the situation.

“Families can really be at risk for developing their own physical health issues or mental health issues as a result of chronic stress,” says Leanne Needham, family work lead at the Canadian Mental Health Association, Peel Dufferin, a United Way supported agency. “Some families can be exposed to this chronic level of stress for years and years.” Through her work, Needham has seen caregivers develop chronic pain, illness and depression as a result of ongoing worry and fear.

Add to this the fact there may be conflict in the home that can lead to trauma — having interventions with police or having their loved one disappear for days at a time, and “the grief around that and not knowing where to turn or when things are going to change,” says Needham.

Caregivers often have multiple responsibilities; the ‘sandwich-generation’ may be taking care of children and elderly parents at the same time. StatsCan found that 60 per cent of caregivers were working at a paid job or business, and 28 per cent had children under the age of 18.

“Sometimes [caregivers] just need a break,” says Wanda Morris, chief advocacy and engagement officer for the Canadian Association for Retired Persons. CARP’s Caring for Caregivers campaign is advocating for increased financial benefits for family caregivers in Canada, many of whom are on the verge of burnout. “People are being dropped off in emergency on a Friday night, and that sounds really heinous, but sometimes families are just at their wit’s end.”

Even in cases where government-funded care is provided, Morris says informal caregivers are frustrated with lack of continuity and flexibility. There’s a “revolving door” of government-funded caregivers, which impacts continuity of care. This is stressful for the person being supported, particularly when that care is intimate, such as bathing. “Imagine having that happen with different random strangers all of the time,” says Morris.

Caregivers are often so busy looking for supports for their loved ones, they forget to take care of themselves, says Needham. Or, they don’t know supports even exist. But it’s similar to the safety warning on airplanes: Put your own oxygen mask on first before helping the person next to you. “If you wear yourself out, then you’re not going to be able to be there for your loved ones,” she says.

CAMH has come up with a list of recommendations for caregivers, including income support to cover expenses and lost income; peer support where family members can share their fears and frustrations, and learn coping skills; and respite services to give caregivers a break from their responsibilities.

While much needs to be done on the legislative front to provide better income support and job protection to caregivers, there are a broad range of other supports, from skills-building workshops to adult daycare. Local CMHAs across Ontario, for example, offer family support, from educational workshops to counselling; there are also options through hospitals.

In the GTA, a number of non-profit family support organizations provide education, counselling and peer support groups, such as the Mood Disorders Association of Ontario, Family Association for Mental Health Everywhere (FAME), and the Family Outreach and Response Program (now affiliated with CMHA Toronto). The Sashbear Foundation runs a 12-week program called Family Connections, which provides skills training and support for people in a relationship with someone who has emotion dysregulation.

“[Caregiving] can be very draining — reaching out and getting support can help you understand better how to support somebody,” says Needham. “It can reduce conflict in the home and it can keep you going longer and stronger.”

Head to LocalLove.ca to learn more about preventing caregiver burnout and watch this inspiring video to hear a personal account of how community supports can help caregivers.