Sheri is always surprised at how little the general medical community seems to know about the effects of Alzheimer's and cognitive impairment. When Sheri took Bob and "Al" for his injections in his back, they did the procedure and then wanted "Al" to tell them what "percent" improvement he felt after an hour sitting in the waiting room. How he answers is going to determine whether or not he moves to the next procedure. Huh? "Al" can not possibly tell you what percent improvement there is, when "Al" has already forgotten that he had a procedure and what the procedure was for, much less how to put it in a percent.They would have been far better giving him a physical test to see his movement restriction (because of the pain) before and then again after the procedure. She knows it is probably not as simple as all that, but she is baffled by the lack of understanding.
Sheri hates this disease.
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Sheri: That is the thing I learned 22 years ago when I was having a heart problem for the first time. You have to treat docs like you're the first patient they've ever seen. You have to describe things the way you feel them. My docs kept doing little tests and saying that they couldn't see anything. When I persisted they said they would try the "big" test. Of course what they meant was, this is an expensive procedure but we've tried every other thing we can think of, so here goes. As I lay there in the first minute of the test the cardiologist said, "Oh geez' you need 2 bypasses and you needed them a month ago!"
ReplyDeleteI tried to get my mom (Parkinson's) to be better about how she described her problems but to no avail. When she was asked how she felt she would say things like, "not so bad", or "better than yesterday" or "this is my worst day yet" but never the details of where it hurt or when or how much or what made it feel better or worse.
You have a good idea there. Now, you have to lead the docs to it. Tell the doc to measure the pain first before the injection with some kind of physical test and then after by seeing what Bob/Al can do, just the way you just explained it. Always preface every exam with an explanation of how Bob/Al will not be able to respond the way other patients do. Remind them that they have to think more about the treatment ahead of time. Things like: What's the best way to treat and then what are alternate ways to treat? How can I best measure how well my treatment is doing? What signs can I look for without patient interaction?
You're on the right track. Now you just have to be a real nag about it every time you go to the doc. In the meantime you may be able to conduct your own assesment on Bob/Al because you know them best. Write down when things happen. Where it hurts, how long, what makes it feel better, etc. You know them best, you have to be their advocate. If not you, who?
Frustrating.
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