Although caregiving is now a common experience, roles and activities can be very different from one caregiver to the next. Caregiving is dynamic, and it can move in different directions at any given time. But caregivers have a voice and as their role expands, using their voice can improve their own situation and the care team’s ability to help. Here are a few tips and strategies:
IDENTIFY AS A CAREGIVER: We can’t have a voice, if we don’t know what we want to say! Caregivers may not always think of themselves as a carer but rather in terms of their relationship such as a spouse, parent, adult child, neighbour, etc. Regardless of the relationship you have with the person you are supporting and caring for, it’s important that you add the tag “caregiver” to the list of things you are. Without identifying yourself as a caregiver, it’ll be much harder to find the right resources and support that can help you in your role.
BE PREPARED: Given the complexity and ever-changing role of caregiving, caregivers often feel better when they are prepared and supported. Carol, who is caring for her son with schizophrenia, shares what’s in her caregiving backpack: “Information about my son’s disease, skills and understanding about how to deal with his behavioural challenges, problem-solving techniques, reminders about boundary setting, knowing what keeps me resilient, self-compassion and respite.” Yes, it’s a big backpack, and it takes time to fill it with the right tools.
EXPLAIN YOUR ROLE: Patient and family-centred care is an approach to health care that respects the central role caregivers play in a care recipient’s life. Increasing awareness of your role to health care professionals is one way to help voice your needs. Margaret, who cares for her husband, Ron, finds she needs to remind their family doctor and specialist about her part on the care team. Ron is recovering from a stroke and has mobility and memory issues. She respectfully might say, “I know Ron is the patient and we are here to talk about his medical needs, but it isn’t just him going through treatment and recovery. Ron and I work together to manage his recovery plan, and it’s helpful for me to be part of the care planning.”
ASK FOR HELP: Ah, the biggie! Many people find it hard to ask for help. When you’re a caregiver, it can be even harder. About 30 per cent of caregivers have unmet support. This can mean caregivers experience higher levels of reported daily stress and lower self-reported mental health. Learning to accept help early in your caregiving role and knowing who to ask will make it easier down the road.
Finding and using your caregiving voice can take on different forms and can change over time. Don’t forget to tune into our new podcast series, “Caregivers Out Loud!” as we highlight and share the voices of caregivers.
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Wendy Johnstone is a Gerontologist and a consultant with Family Caregivers of British Columbia in Victoria, BC.