JOAN’S BLOG – Friday, April 18, 2008 – DOCTORS FEEDING DENIAL – MAKING IT WORSE

I suppose this is another of those things I should let “roll off of my back”, but it is really starting to infuriate me. It is the doctors my husband sees, aside from the neurologists, who are as clueless as the friends and relatives who see him for a few hours at a time.  Just a sampling:

“Plenty of Alzheimer patients come into this office, and believe me, you are fine compared to them.”

“Who diagnosed you with Alzheimer’s Disease? I would never believe you have it, but I guess if the best doctor in Florida diagnosed you, you must have it.”

Do these doctors think they are helping the situation? No, of course I do not want the doctors to throw it in his face, and tell him he seems confused and forgetful, but neither do I want them to feed his denial, which only makes my job as the rule enforcer, more difficult.

My husband is fully aware of the almost total loss of his short term memory, but because of his declining judgment, cognition, and flexibility of thinking, he has difficulty understanding why I insist on limiting some of his activities. What these supposedly “encouraging” statements by doctors accomplish is bolster his belief that there is nothing wrong with his thinking processes, and I am over-reacting, holding him back, and treating him like a child. I am the one who sees the nighttime confusion, and will not allow him to drive when it is dark (regardless of the “clearance” for driving he received from the medical driving exam); I am the one who sees the stress and anger building when faced with new situations, so I have to make the decisions as to where, when, and with whom we will go; I am the one who sees the bewildered facial expressions, slow processing, and total misunderstanding,  when he is presented with more than one or two pieces of information, so I have to explain everything one sentence at a time. The doctors he sees just rattle on quickly, giving him lengthy explanations, and because he nods his head, agrees, and knows how to cover his difficulties in public, I am left to pick up the pieces.

I am not faulting any of these doctors for not being totally familiar with Alzheimer’s Disease – I understand that it is not their area of expertise. What I am asking of them is to realize that, as one of the retired primary care doctors on our Message Board has written - he never fully recognized the extent of Alzheimer’s Disease in his patients, because he saw them for 15 minutes every few months. It was when his own wife developed Alzheimer’s that he understood the intricacies of the disease. That is what I am asking of these doctors – please understand that you do not see these patients enough to understand the extent of their symptoms. Telling them that you see nothing wrong with them, or that they seem fine compared to other Alzheimer patients; is not helping them or their caregivers to cope with an already difficult situation. A simple, “How are you doing?”, and a “That’s great”, when the patient answers, “Fine”, would be perfectly acceptable, in the opinion of this harried caregiver spouse. Then proceed with the urological, diabetic, cardiology, or whatever else exam.

On the flip side of this, I would expect the neurologists to recognize what is going on with him, but I actually was quite surprised at how quickly they did. His primary neurologist, the head of the Memory Disorders Clinic, pegged dementia after 10 minutes of talking with him, before he even put him through the extensive testing. The second neurologist, the one who did all of the nerve conduction testing for Sid’s diabetic neuropathy, told me that, although he failed that test miserably, and had severe neuropathy, he was more concerned about his cognition.

I am not out to alienate doctors – I understand the difficulties of your job –my oldest and dearest friend is a doctor – all I am asking is that you realize the complexity of Alzheimer’s Disease, and that you cannot possibly recognize or understand the depth and extent of how the disease is affecting your patient with a 15 minute visit every 3 months.

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