Throughout my therapy career, I have worked with many patients who have a history of Parkinson’s disease. Most are going through rehab for other complications, but their secondary diagnosis of Parkinson’s makes setting goals more complicated. Because my role is to help these patients return to their former functional level, I need to get a complete picture of what their daily life used to be at home.
Caregivers have a big responsibility not only in providing assistance to these patients, but also in keeping open communication with the medical staff involved in their hospital care. This means being honest about how much help the patient usually needed for basic tasks at home, and being straightforward about how much help will be available when they return there.
We recently had a patient on our unit who, when asked about dressing and bathing tasks at home, claimed he was “very independent.” His wife confirmed that he walked by himself, dressed alone in the morning, and took himself to and from the bathroom without help. With this in mind, the therapists and nursing staff set goals for the patient to return to this level of living, and put him to work.
Less than two weeks into his rehab stay, something was not adding up. The patient was having episodes of incontinence, which he claimed was new. He had fallen more than once. He was not able to grasp the concept of the new equipment we were showing him. And his wife—who initially had asked us to give him everything we had—was insisting his “new” problems were caused by us working him too much.
It was officially family conference time.
With some gentle prodding, we learned that the patient’s incontinence was not exactly new. We also learned that the patient had recently needed help to put on his socks and shoes. In fact, some days he had even been helped out of bed. This was a completely different picture of home life than his wife had painted originally. Halfway into his stay, the entire team had to change tactics. Had we known the truth from the start, the patient might have been able to go home a week early. I’m sure he would have liked that.
I don’t believe our patient’s wife was trying to deceive us. I think she just didn’t understand the impact of her misinformation. Whether she did not feel the help she provided was significant enough to report, or whether she was merely hoping a little white lie might help him get even better than he was before is still a mystery to me.
Fortunately, despite the confusion at the beginning of his stay, she felt perfectly confident that she could take care of him at home, and he left our unit a few days later. While this story ended well, it could have easily gone the other way. When dealing with the health of your loved one with Parkinson’s disease, honesty is always best.