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Caregiving is a job. But unlike the jobs people take on, this is one for which we're not qualified. Even if caregiving falls upon trained professionals—care aides or nurses—its demands go beyond any normal work obligations.
This lack of knowledge calls for learning, but many caregivers are overwhelmed by the tasks that face them or the fear of what's to come. And there are no courses to sign up for, no night school programs or training at the community center. We're on our own facing a future we can't comprehend and responsibilities we've never had to confront. The antidote is to learn. Here is a brief framework for doing that.
Learning falls into three categories. The first is how to give care. How do I dress someone who can't stand? How do I transfer someone without wrecking my back? For this type of learning, your instructors are people who do it for a living. Hire a care aide and watch how he or she handles your caree. Ask questions. Practice under the care aide's watchful eye. And not just care aides, Make an appointment with a physiotherapist and an occupational therapist. The former will show you how to transfer safely and how to give exercises. The latter will acquaint you with technologies such as transfer poles, special cutlery, or mobility devices.
The second category is about the disease itself. If it's Parkinson's, how does it progress? What are the symptoms? What treatments are available? What special care is needed? For example, Parkinson's medications must be given on time. If your caree is admitted to hospital, one of your jobs is to be an advocate and make sure the staff knows what the disease requires. You learn this from your doctor, but also from books. Spend a couple of hours in the library scanning books on Parkinson's. This is not an in-depth study, you're looking for one or two books that seem to address what you're looking for and are written in a style you can understand. Then borrow or buy these books.
The third category is the services that are available. Is there home care? How do I get a case manager for my caree? Is there a day program? Respite care? What do these cost, what are the restrictions or qualifications, and how do I access them? But beyond this, is there a local organization that deals with Parkinson's? What do they offer? And even further, some transit services offer free transit for caregivers. Some airlines will allow caregivers to fly for free on certain routes. Some pharmaceutical manufacturers offer a program in which they will cover the difference in price between the generic medications and the brand name. Your starting point for this rich set of services is your doctor and organizations that deal with the disease. As you dig deeper, your caree's case manager is a valuable resource. And support groups, with people who have been through what you're going through are rich with information.
Learning is mandatory for effective caregiving. Become a seeker. Information is out there. The more you learn, the easier your caregiving will be.