When my mother and I were told by the neurologist at Kaiser Permanente, at the time her insurance and health care provider, that she had Alzheimer's, I was sitting thigh-to-thigh with her in the small exam room. There was a social worker sitting next to the neurologist and we faced each other.
This had been the appointment that we'd been expecting to have for probably six months, and instead we'd had a number of other tests done for everything from latent syphilis, B-vitamin deficiencies, a brain tumor and probably others I can't recall. I'd tried unsuccessfully to get her to agree to go into the doctor for a good year-and-a-half prior to this day for the memory problems she'd been having and now we were finally here, at the moment of diagnosis.
Moments earlier the doctor had come in, introduced himself, sat down, and questioned her about what city she was in, where she was (hospital, etc), the year, and who the President of the United States was at the time. She couldn't answer these basic questions and he nodded in a way that I think attempted to be reassuring to her because she kept apologizing for not knowing the answers (I think she knew she not getting it right although she also seemed completely unconcerned about the fact she was not getting them right). The doctor, looking at me, said something to the effect of "we've done a number of tests on your mother which have all been negative. Based on her symptoms, we've determined she has Alzheimer's. I'll write her a prescription for Aricept. Any questions?"
I would describe his expression but by the time he got through the sentence I could no longer see him. Tears had spontaneously appeared and I was unsure how to react. I didn't want to cry. For one, I didn't want my mom to be frightened and two, I was completely embarrassed. I'm a woman and crying only seems proper if more people are doing it with you and I really didn't think the doctor and social worker were going to join me.
What do you do when you're parent is given a death sentence? You do what you have been socialized to do. You thank the kind and detached doctor who needs to leave because he has many other patients to see because his employer has only given him 15 minutes or so per patient. The social worker looks at you and gives you her card and she really won't help you when you call her in the future but you nod and thank her for her time because she's been nice and has suggested that she can do more than she can.
Then you are on your own.
You're told to follow up with your primary doctor. My mom's primary has been her doctor for years. My mother loves her doctor. At every visit, my mother hugs her with great affection, just like family. Her primary is competent, but not a neurologist. We see her for years because when we request a second visit with the neurologist, he let's us know in his kind, detached way, that we don't need to do that because there is "nothing he can do". And that is that.
Then you are on your own, again.
Aricept is expensive at the time, but we pay for it and we find out later that it probably had no beneficial effect on her at. Over some time we ask to quit the drug because we think she is either 1) getting no benefit or 2) she's having side effects. We are given another drug, Namenda. She takes that easily two years and we find out later that she took it probably 1 1/2 years longer than she needed to since the studies suggest that if there is a benefit, its only in a very small number of people and only for about six months.
I research drugs for her symptoms and take the journal articles to her primary doctor to support my requests for medication changes. Sometimes it works. The doctor is always gracious and appreciative of the articles. I don't know if she has time to read them - as she has a full case load of people to see, adults and children, and a myriad of illnesses to learn about.
I create alerts on Google, search Pub Med, and read as much as I can about the various theories on the causes and potential treatments. Months turn to years and the studies seem more robust except they are all still primarily in mice. Not a big help to my mom. or us.
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