According to Jessica Slater-Hamilton, one important step is to understand what may happen to the person we’re looking after if we don’t. She coordinates a caregiver support circle run by VON in Grey Bruce, but she used to manage admissions at a long-term care home. She recalls the crisis admission of a woman with multiple sclerosis whose husband suffered a heart attack and was rushed to hospital. “This woman had to come to us, which was two hours away from home, because we were the only ones with an empty bed at the time.”
The moral of the story? “You’re no good to the person you’re looking after if you’re not healthy,” says Slater-Hamilton.
She routinely hands out the widely-adopted Caregiver’s Bill of Rights to the participants in her support circles. It sets out nine rights which address the needs of people who are looking after someone with a significant illness or disability, particularly if it’s for an extended period of time. She finds that reading the Bill of Rights gives many members of her support circles permission to talk about the feelings they’ve been experiencing, including guilt, and start to work through them.
Standing up for your rights as a caregiver may take some negotiation with the person you’re looking after. For instance, if your relative insists that you provide all their care, you may have to politely but firmly push back. (Item 2 in the Caregiver’s Bill of Rights: “I have the right to seek help from others even though my relative may object. I recognize the limits of my own endurance and strength.”) It may be helpful to offer your relative options (for example, “if you don’t want to move into a retirement home, then you need to let me arrange for a personal support worker to help you.”) Don’t give in if your relative tries to use guilt or anger (consciously or unconsciously) to get you to agree to their original demands (Item 5).
Learning how to get help from others is another important piece of the puzzle. Slater-Hamilton suggests:
- Don’t let other family members off the hook. Every responsibility they take on, even if it’s something as simple as making a phone call, is one less thing you have to deal with.
- If a friend or neighbour offers to help, give them a task (like mowing the lawn or getting groceries or something else suited to their talents). If someone wants to give you a Christmas or birthday present, you might want to suggest that they make a gift of their time (helping you out).
- Find out what support services are available locally for you and your relative. The Find Caregiver Support Services tool at the top of this page can help you do that. Call relevant agencies and ask them about their services. Ask for a tour.
- Talking to an experienced family caregiver who’s “been there” can very helpful. You can often find one at a caregiver support group / circle run by a local agency. Caregiver support groups are listed under Care for the Caregiver when you search for services on this site.
The Caregiver’s Bill of Rights