Originally posted to Her Final Year on August 24, 2011 by John
Reprinted with permission, with a few small adjustments.
Alzheimer's Disease isn't fickle. It doesn't target just one demographic: it doesn't care how well you're doing financially, or if you're popular, or what color you paint your toe nails or if you're hairy or hairless. Anyone may find themselves either a victim or a potential care-giver.1
Ronald Reagan had Alzheimer's Disease; now WaPo is reporting that Pat Summitt has been diagnosed with early-onset dementia:2
Three months ago, Summitt, 59, the blaze-eyed, clench-fisted University of Tennessee women’s basketball coach who has won more games than any other college coach ever, men’s or women’s, visited the Mayo Clinic in Rochester, Minn. seeking an explanation for a troubling series of memory lapses over the past year. A woman who was always highly organized had to ask repeatedly what time a team meeting was scheduled for. "She lost her keys three times a day instead of once," her son Tyler says. She was late to practice. On occasion, she simply stayed in bed.
There are tests which help doctors determine the type - and stage - of dementia. For some folks, these tests make sense. For others, they may be misleading. Such was the case with Summitt, according to her son. Per the WaPo piece:
Next, she was asked, “Do you know today’s date?” She has never known the date. She deals with dates strictly on a need to know basis. Frequently, she doesn’t even known the name of her hotel — there have been so many of them, and they all look the same, and they are all called Radisson or Clarion or Hyatt or Hilton.
This has always been Summitt. She has always mislaid her car keys and forgotten where she put her cellphone. She has always juggled too many responsibilities, and obligations. For this reason, the numbers from her test results are somewhat misleading, according to her son.
When I was the primary care-giver for my mother-in-law, I also noted that the tests (sometimes as simple as asking someone if they remembered a person's name only a few minutes after being introduced) were not fool-proof:3
Part and parcel with spending more time with Georgia by her on the occasional consulting appointment and running errands with her was that we established a better understanding of each other. One of the perks of this was helping her cope with her memory and mental lapses. I encouraged Georgia with clues and triggers to help her remember things like names. The neurologist's name -- "Dr. Penny" -- was one example. I placed a penny in Georgia's hand while we waited for him, after the second time she asked me his name. A minute or so later, I asked her the doctor's name. She looked at the penny in her hand and smiled. "Dr. Penny," she replied with a grin. When he entered, she didn't need to look at her hand. In fact, I think she'd pocketed the penny by that point. But she did remember his name.
This was one of those doubled-edged sword things. The blade cuts both ways -- my helpful "hint" to Georgia to help her alleviate the stress of not remembering the doctor's name and help her feel more at ease likely factored into the doctor's evaluation, as from his perspective Georgia was able to recall his name w/o assistance.
I didn't really think of that at the time.
Continuation of this thought... Folks suffering from dementia, particularly in the early stages, do a lot to try and compensate as well as hide their affliction. Caregivers, in spite of the best of intentions, may be enabling a form of denial in some ways -- that was the thought I was trying to articulate above, wondering if my assistance to Georgia to help her with the doctor's name was just one way of potentially helping her hide her symptoms, even though it was also a positive reinforcement of my role / relationship with her as caregiver/protector/assistant etc.
Sometimes, in our efforts to be helpful, we may thwart some of the simpler yet rudimentary tests that doctors use to establish the parameters necessary for a diagnosis.
It's one of the additionally frustrating things about finding oneself in a care-giving role: can your efforts to help the loved one also impact - possibly negatively - the ability of doctors to develop an accurate medical picture in order to make a proper diagnosis?
A crucial factor that goes hand-in-hand with this is the issue of communication. Not just between doctors and care-givers, but also doctors and patients, patients and care-givers, and all of the preceding in various combinations as they need to communicate with family, friends, legal assistance and social workers or state & federal employees.