Washington DCThere have been many responses to my last post about Jim and Nikki’s experience at the hospital after Jim’s bike accident. The emotional intensity of these comments has encouraged me to think a little more deeply about this disease. Living with Alzheimer's is more complicated than I’ve thought. Early dementia is not that easy to spot, and more advanced dementia may seem very different from day to day. It can be difficult for other people to know what’s going on.
Jim’s impairment, for instance, is not obvious. In the several hours I’ve spent with him, I’ve noticed only a little trouble word-finding that he compensates for easily. When Nikki emailed me that Jim couldn’t manage his own pain medication schedule or even use a scale of one-to-ten to indicate his pain level, I was surprised. I certainly wouldn’t have expected that this man—who seems so bright and energetic, who can ride his bicycle without getting lost, who can carry on a stimulating conversation for several hours—would have trouble communicating the severity of his pain. If I’d been Jim’s doctor, what would I have done with Nikki’s warning about Jim’s Alzheimer's when he seemed so competent? It’s a confounding disease
It’s problematic at the other end of the spectrum, too. A person with much more advanced disease may seem quite impaired overall yet be quite intact in other specific areas, for instance, playing the piano. Another patient, under the stress of a urinary tract infection or a hospitalization, may today seem completely confused about where he is or even who he is while tomorrow he’ll seem almost unimpaired.
The symptoms of Alzheimer's aren’t a smooth downward curve beginning at normal and descending to deeply impaired; they jump around in an almost random pattern. The specifics of the impairment will be unpredictably different from one patient to the next or even from day-to-day in the same patient.
What’s the take-home lesson for me? I need to talk with family and friends often about my disease if I expect them to be able to respond appropriately to me. My friends aren’t mind-readers; they need to be told as clearly as possible what I can and cannot do on any given day … and to be prepared for surprises.
I can’t assume that even a good friend will know how to respond to me in any particular situation unless I keep them up-to-date on what’s going on. And even then there may be miscommunication. If I don’t talk about it, friends and family who expect a daily consistency will be confused and may begin to avoid me out of uncertainty or embarrassment. If we intend to break the cycle of ignorance and isolation, we need to bring Alzheimer's out of the closet … over and over again.