If It’s Not Alzheimer’s, What Is It?

A jumbled up puzzle

A jumbled up puzzleIn “Mom Update: February 2013” I wrote about how quickly mom’s disease is progressing and how it might be something in addition to or instead of Alzheimer’s disease.

Oh we’ve been calling it Alzheimer’s disease, but the truth is — we don’t know what mom has.  Mom had an MRI in 2006 that ruled out other brain problems like a stroke or a tumor, but we never received a definitive diagnosis — just “probable Alzheimer’s.”

With Alzheimer’s making up the majority of all dementia cases, it’s an easy diagnosis to go along with.  Add that my grandmother and great-grandmother “had Alzheimer’s,” and you can see how believing the diagnosis was even easier.

But we didn’t really know what my grandmother and great-grandmother had.  And we don’t really know what mom has.

The doctor jumped to a conclusion and so did we.

There is plenty written about the misdiagnosis of Alzheimer’s disease including a 2011 study that found half of Alzheimer’s cases are misdiagnosed.   With Alzheimer’s making up most of all dementia cases, and given that it can’t accurately be diagnosed until after death, probable Alzheimer’s is an all too common diagnosis doctors make.

Another article titled “What Type of Dementia Is It?” outlines the importance of getting an accurate diagnosis in an effort to provide the best care.  There are over twenty different types of dementia including rare forms — one of which my mother might have.

I feel a little foolish and naive about not questioning mom’s diagnosis.

It’s too late for diagnostic testing on my mom.  She would need to be sedated to get an accurate brain scan — and sedation and dementia don’t mix well, quite often causing further decline.

If we want to know what mom has, at this point, there is only one way to find out — an autopsy.

Autopsy is a scary word, and scary to think about.  But I’ll be thinking about it.

How important is it to know what mom has?  How will we benefit from knowing?  What’s the downside of not knowing?

Have you had to make this type of decision before?

4 thoughts on “If It’s Not Alzheimer’s, What Is It?”

  1. Joanne I think at this point there is no way knowing definitively will help your
    mom. It could however be of help to you and other family members. There seems to be a big difference between your mom and your Grandmother. Evie was paranoid and that certainly doesn’t describe Ruth. Your mom is in a much happier place- she beams. She always looks so happy – well except when she’s being a stubborn 13 year old who isn’t getting her way. Of course I base my opinion on the week she spent here and the week we were at the lake. Never had to make this decision, thankfully.

    1. Hi Lynda, yes you are right — it’s too late to help my mom. But it’s something to consider for the rest of us, including her grandchildren. So, we’ll be thinking on it and at this point, I think it’s a reality we need to consider. Good to hear from you. Hello to UJ.

  2. I hate thinking about the “after”
    But I think an autopsy may answer questions for all of us, knowing that it has been an every generation thing for the women in our family. Makes me shudder to think, which one of us will it lay claim for? And then who from there?

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