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April is Parkinson's Disease Awareness Month. I've been posed five questions by the Parkinson Society British Columbia and I'll be answering one each Monday.
The final question is, "In your book, you talk about the three dimensions of caregiving. Can you please summarize these aspects of caring?"
Writing about anything forces the author to analyze the subject more carefully. When I thought about caregiving and the various aspects of it, it struck me that there were three different areas—I call them dimensions—of caregiving: the physical, the structural, and the emotional.
The physical dimension is the "how-to" side. How do I dress someone who can't stand? How do I give a bed bath without soaking the mattress? How do make sure my caree has taken her medications? You can learn these by trial and error, which will be hard on you and your caree, or you can recognize that they are what care aides and nurses do. Bring in someone, either from your local home care agency or a private nursing service, then watch. Ask questions. Practice. Unless you are a health care professional, you'll need to learn these things.
The structural dimension is the set of activities that modify your home environment to make your and your caree's lives easier. Install grab bars in the shower. Reinforce your towel racks so your caree doesn't end up on the floor. Use soaker pads under the bedsheets to handle nighttime accidents. Remove scatter rugs unless you have a lot of insurance and love visiting the hospital. Consider changing interior doors to open outward so if your caree falls and is wedged against the door, you can open it without the risk of harming her. Consult an occupational therapist for advice on modifying your home or on devices you might use.
The structural dimension also includes things you can do to ease your mind. Register for a medical alert service. Install a lockbox by your front door with a housekey for emergency services or care aides to use and give the code to the service. Carry a wallet card with emergency contacts in case you are incapacitated while you're away from the house.
The emotional dimension deals with the turmoil that caregivers report. Grief, anger, despair, are normal. In part, this is because caregiving is 24 hours a day, seven days a week. It doesn't have the away time that all other jobs have. And in part, it's because of the pain of watching someone you love decline and knowing there's nothing you can do to stop it.
Just as with Parkinson's, there is no cure for caregiving, but there are treatments. Make time for yourself. Bring in a care aide from the home care agency. Register your caree for a day program. Place her in a respite home for a few days. Then use the time for the things you enjoy. Even taking an hour before bedtime when she's asleep to read or do puzzles or listen to music can relax and ease your burden. You still have a life and a responsibility to yourself to live it.