Not All Specialists Are Special

We were recently referred to a neurologist based on my husband’s feeling that he was losing his memory. At the age of 64, his general practitioner agreed that it was an issue worth investigating. This is a life curve that provides me with an insider view resulting in quandary and possibly denial. It is like walking through steady fog, I think I see clearly but maybe I do not.
So the dementia coach in me was in absentia when I scheduled the second neurology appointment in three years. Despite the many family caregivers who had expressed that the best evaluation they ever had was from a more intensive Gero-psychology based evaluation, we went to a referred neurologist.
Despite the specialist fee charged, our experience was far from special. The visit lasted less than 15 minutes, involved a cursory physical assessment, the traditional three question quiz and a brief discussion with my husband as to what he felt his symptoms were.
The thing that was most appalling to experience was the complete disregard of the spouse’s perspective. Never once did the doctor direct a question or even eye contact to me during the visit. Of course I had no expectation that the doctor would be attuned to my training or professional experience. Let’s face it, most medical doctors would not see a doctorate based in psychosocial dementia interventions as an expertise. But I did expect he would be astute enough to value input from the spouse.
At the end of his brief assessment, he told my husband “probably mild cognitive impairment, nothing to worry about.” At which point my inner researcher went ballistic. In my best patient advocate voice I stated, “We live on a boat, is this a problem? I am worried.” To which he stated, “You have auto-pilot, no need to worry.”
So as we leave my inner researcher is still screaming while inner wife of a 64 year old man is happy to have dodged the bullet. Just a little MCI. Like just a little pregnant. No need to worry. We have instruments. . .
So it is after some time away from the ordeal, we have agreed to have a more thorough clinical assessment. Hopefully one that will result in silencing the raging researcher with truly specialized testing. We have, of course, postponed this assessment until winter because . . . well either wisdom or denial. To be cont’d.

About Cate

Passionate about dementia care and quality of life throughout the last days of life----sums up Cate McCarty, Dr. Cate, Dementia Coach. With close to forty years of long-term care experience in nursing and recreation, a Master's in Thanatology and a PhD in Aging Studies, Dr. Cate seizes every opportunity to translate research into quality of life for individuals with dementia and all of us who have the honor to "rub elbows" with them.
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One Response to Not All Specialists Are Special

  1. Rachel Simon says:

    I share your anger at this story. This “specialist” was derelict in his duties – or so woefully ill-informed about the importance of family input, and the potential complications of living on a boat with a person with a cognitive impairment, that he should have to undergo intensive retraining if he wants to keep his license. I am grateful that you know enough for alarm bells to have gone off during this meeting, and that you also have some excellent ideas of where and to whom you need to turn. But my heart hurts for the many unaware people who’ve sat in those same chairs with those same concerns, only to be sent home without the absolutely crucial information they need. Looking back on my own story, I think I know two of them.

    Looking forward to your next update – with, I hope, a more professional professional.

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