Wednesday, December 18, 2013
After Richard Taylor's early-onset Alzheimer's diagnosis, he set out to illuminate facts and perspectives about the disease. Go to http://www.richardtaylorphd.com/ to read more or link to his blog. You can also learn about or order his books Alzheimer's From the Inside Out and Live Outside the Stigma, and his DVDs Be With Me Today and 20 Questions, 100 Answers, 6 Perspectives (About Dementia).
Wednesday, December 11, 2013
I might as well ask how many stars span the skies. This side of heaven, however, I will not have answers to my questions. Even Google cannot supply these answers.
For example, once an elderly person begins to slump in his wheelchair, can that be corrected? What causes slumping? Weak bones? Loss of balance? Depression? And if the person has dementia, is it even possible to know the cause?
To all my creatively phrased attempts to find out, Google responds with wheelchair vendors. Google also gave me www.dementiaguide.com, whose symptom library proved interesting but did not address slumping.
Another question I posed to Google was how to handle an Alzheimer’s patient’s teeth loosening. What are the contributing factors? How can we prevent further tooth loss? What’s the best thing to do with two already wobbly teeth? Google gives me only sites that propose a reverse order of things: Loosening teeth might predict Alzheimer’s.
My overarching, most emotional, question—I’m not sure how to phrase for Google. I feel helpless and twice removed from my father’s medical decision makers. The doctors talk with the nursing home staff, who in turn, communicate with the family. But when I ask why a doctor made a decision, the staff doesn’t know. They may offer to find out, but never call me back. And only when I ask why an oxygen machine is in Dad’s room do I find out he had a syncope incident over the weekend. Only when I happen to show up the day after my father spiked a fever does a nurse tell me about it. I can’t blame her for forgetting; she’s got several dozen people’s medical incidents on her mind. And nurses are pretty good about calling my mom and me about bigger things.
Still … I often feel helpless and somewhat cowed by institutional barriers. It’s easy to accompany my noninstitutionalized mother to her doctor appointments; direct access is the norm. Once my father entered the nursing home, family doctors were out; nursing home doctors were in. But I think the time has come to contact my father’s nursing home’s doctor and dentist directly. I would just feel better if I had a few more answers.