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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 one of the tips.
Caregivers need to learn and one of the topics is about the disease itself. There are two reasons why this is important. First, learning about the progress of Parkinson's can prepare a caregiver and a caree for what might be coming next. I say might because the disease varies across patients, but however it unfolds, it is progressive and it will get worse. Being prepared means you won't get blindsided, you can watch for early signs of a new symptom, and you can explore treatments in advance.
The second reason for learning is to advocate for the caree to the medical community—doctors and hospitals. Faced with a Parkinson's patient, too many doctors are quick to attribute any medical ailment to the disease instead of treating it as a separate condition. My wife once lamented that apparently having Parkinson's meant you couldn't have anything else. Of course, you can and if your caree is exhibiting a symptom that is not characteristic of Parkinson's, you can insist the doctor dig deeper. Or find another doctor.
Advocating for the caree in a hospital is also important. Hospital staff are mostly uninformed about Parkinson's. This is not an indictment, just a recognition that there are thousands of medical conditions and nobody can be expert in them all. So it's up to us as caregivers to educate them. For example, medications must be given on time. Precisely. Swallowing is a problem and must be assessed and monitored.
How do we as caregivers learn about the disease? Asking questions of doctors or joining a Parkinson's organization is a good start, but learning is time-consuming and professionals don't have the time to teach to the depth we need. So here's my suggestion. Spend a couple of hours in the library. Scan all the books you can find on Parkinson's, then pick two or three that are readable and that appear to give you meaningful information. Then borrow, or even buy those books. Then study them. When you're done, you won't be an expert on the disease, but except for specialists, you'll know more than any of the medical professionals you encounter. Knowledge gives the ability to be a great caregiver.