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Earlier this year, I gave a talk at a Care Partners workshop, put on by the Parkinson Society British Columbia. The topic was advice for the new caregiver. I'll be giving the same talk in October and again at the National Caregiving Conference in Chicago in November. Here's another of the tips.
Caregiving, whether for Parkinson's disease or any of the other afflictions that can strike us, is hard. But too many caregivers are doing it by themselves. If you saw someone carrying a heavy load on his back when a wheelbarrow was available, you'd probably wonder why. And yet, that's what too many caregivers try to do.
I have spoken to caregivers who bemoan the lack of help, but when I ask them if they have spoken to this agency or that organization, they look at me as if I'd been speaking a foreign language. To them, the existence of support comes as a surprise.
So this is one of the pieces of advice I offer. Research the support services that are available. These will vary across countries, states, and provinces, but some form of them exists in most places. They fall into three categories.
The first is social services. These can be provided by government departments and also by non-profit organizations. Examples of the latter include the local Parkinson's society, seniors' centers, or the AARP (in Canada, the unfortunate acronym CARP). Here, caregivers can find webinars and seminars to help them, as well as services such as home care, day programs, and respite care. In many places, these services are offered through a central agency, which will assign the caree a case manager who can direct caregivers to the services that help. These agencies may also offer services such as physio- and occupational therapy.
The second category of help is public services such as transit. Many city transit services offer free or discounted transit to caregivers. Some provide reduced cost taxi coupons. And some airlines offer limited free travel for caregivers.
The third category is financial. Some drug companies provide reduced-cost medications for those in need. In Canada, Merck, the manufacturer of Sinemet, offers a program that pays the difference in price between the brand name and the generic levodopa/carbidopa. There are also government program that provide financial assistance or that reduce taxation levels for caregivers.
Where can a caregiver find out about these services? The first stop is the doctor specializing in the disease. Another good source is the local library, which may have listings of agencies and organizations that can help. And of course, the Yellow Pages or online search tools can give contact information for non-profit organizations. The services are available. Learn about them. Use them.