Caregiving often gets squeezed into an already busy life, including the day-to-day responsibilities of family, work, and maintaining a home. Many caregivers take on this new role without letting go of anything else and, over time, can end up exhausted, feeling overwhelmed and in distress.
Gwyn cared for her husband with Parkinson’s Disease for over 10 years. It took her a while to recognize her need for respite services and to permit herself to step out of her role temporarily. She remembers feeling embarrassed the first time she asked for respite.
“It felt like I wasn’t capable or that I was failing my husband and family for not ‘being able to do it all.’ It wasn’t until I came back from a week away that I truly realized how much I needed respite and how it helped my husband as well.”
Respite is a period of rest and relief from the everyday challenges of providing care. It plays a role in helping caregivers maintain their own health, reduce stress levels, and provide relief. It can also be a positive experience for the person receiving care. Respite care can mean short hourly increments, days, or even longer periods of time. It also depends on the care recipient needs, your own needs, and the availability of services in your area. Respite is broken down into informal and formal use.
Informal respite care is provided by another unpaid person typically close to the family in need, including a family member, relative, friend, a support group or volunteer. Our approach at FCBC is to first support a caregiver to identify people that could be in their circle of care (including family, friends, neighbours, community members, etc.), and then guide the circle of care group to meet on a regular basis to help the caregiver maintain their wellness.
Formal respite care is accessed through a variety of avenues, including:
- In-home respite includes access to respite via Home and Community Care throughout health authorities in the province, private pay support, and/or live-in/live-out caregivers.
- Adult day centre respite care provides a day program typically in a licensed facility. It’s a program where the person being cared for can engage in purposeful activity, socialize, and receive care.
- Facility respite care provides short-stay respite care at a licensed facility. Access and criteria may be different depending on who is providing the respite. Ask the case manager what the minimum stay is and how many days total are available in a calendar year.
- Overnight Respite care – some health authorities or private agencies offer this type of programming. For example, Vancouver has a Family Respite Centre where their programs offer private rooms to seniors for 24-hour care when their caregivers require rest. In Fraser Health, caregivers attached to Home and Community can “BookABreak” using an online calendar for respite.
Gwyn talked about the barriers of adopting respite. “I felt guilty, and I was really uncertain of how it would help us. It was also a lot of work to set it up. Initially, when I returned from a two-week work and rest trip, the first thing I noticed was how much my husband diminished after respite and I feel badly about that. But I was quick to remind myself he had a progressive disease and no matter what I did or didn’t do, I knew he’d diminish.”
For her, respite was non-negotiable. “Trying to take care of my needs through work and travel helped me be a better caregiver and wife. Coming back after two weeks gave me new perspective and more energy to continuing caring.”
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Wendy Johnstone is a Gerontologist and a consultant with Family Caregivers of British Columbia in Victoria, BC.