Becoming a caregiver can creep up on you. Maybe it starts with dropping by your mom’s house to do her laundry or taking your dad to a doctor’s appointment. Maybe you call your adult daughter every day to check in because she suffers from depression. Gradually, you find yourself doing more and more as the person you are caring for needs more support. You may not even realize it; you are making a commitment to care for someone else.
Other times, caregiving is triggered by a major health event or acute diagnosis, such as a serious fall, motor vehicle accident, stroke, heart attack or cancer diagnosis. Life as you know it shifts, and all your energy goes to caring for the person who needs you. In an instant, caregiving becomes your new normal.
People new to caregiving often feel:
• they don’t know what they don’t know
• they are getting lots of information and trying to sort out who is on the health care and service provider team
• unsure of what resources or programs exist for the person they are caring for.
Caregiving doesn’t come with a crystal ball. Given the complexity and ever-changing role of caregiving, caregivers often feel better when they are prepared and supported. The first stages of caregiving can feel like the most challenging. Caregivers often feel uncertain about the future, and feel the least informed about what’s happening, what’s needed and expected.
Finding the right information is a first step. This often includes:
Getting the best possible diagnosis: It may take a lot of calls, tests and appointments with the family doctor and specialists, but caregivers and the person they are caring for find it helpful to know what disease they are dealing with and what to look for with symptoms and effects.
Determine what supports you need: Determining what supports you need can often be time consuming, but it is a very important step. Supports can be informational, emotional, and access to publicly-funded or private resources. Try to be as specific as you can be. For example, if the person you are caring for had a stroke, you may need more information about aphasia, the type of stroke, how it affected the brain, mobility and communication, and rehabilitation available in your community.
Learn what specific skills you need: Depending on the diagnosis, learn what specific skills and training you need. Who can help you with proper training and skills? Start with your health care team. Disease-specific programs and caregiver support are also helpful. For example, you may be faced with a complicated medication regime or a rehabilitation program or transferring someone from a wheelchair to a bed. Different skills and information are required based on the diagnosis. For example, caring for someone with frontotemporal dementia or schizophrenia is very different than caring for someone with diabetes or someone on dialysis.
Family Caregivers of BC can help. Our Caregiver Support Line is available to help you navigate life as a caregiver, and we have just about every kind of handout, webinar and workshop to support you in your role as a caregiver.
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Wendy Johnstone is a Gerontologist and a consultant with Family Caregivers of British Columbia in Victoria, BC.