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Karen Henderson spent 14 years looking after her ailing father, and says if she knew then what she knows now, she would have approached caregiving differently.
"I would have changed how I did everything right from the very moment I realized what was happening to me," she says, blaming her frustration at the time on "lack of knowledge, tremendous sorrow and the feeling that society doesn't really care. You feel pretty isolated as a caregiver."
Henderson's health, job and personal relationships suffered as she struggled to look after her dad, Ralph, who had vascular dementia, aphasia and arthritis.
To share her experience, Henderson founded The Caregiver Network Inc.: www.caregiver.on.ca. While the site holds a plethora of information and tips, Henderson's online diary - On My Mind, an honest take on caring for a loved one - is the most popular destination.
"I get e-mail from people every day saying 'Thank you for putting that up, making me understand and making me feel like I'm not the only person who is struggling with this.' "
Henderson also manages www.howtocare.com, which tackles practical issues, such as how to find support, modify your home, plan meals and organize health care. She also publishes a newsletter and has developed the Personal Care Binder. "What you find as a caregiver is that you're overwhelmed with information and stuff gets lost," she says.
"This almost forces you to put all the information in one place, so if somebody comes in from home care . . . they can go to the binder." Henderson recommends families understand the ailments involved, meet to decide who's going to do what, and discuss finances and legal issues. "Just trying to take it day by day doesn't help anybody," she says. "When it's all over you want to be able to look back and say, 'I did the best that I could, I looked after my mom and dad, I'm proud of what I did'"
"The only way you can do that is by planning."
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