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Soul Mate

Hello, my first post here.  I am thankful for all the information presented here.  It means a lot. Here’s my story:

 

 

In the early 1980’s my FIL was diagnosed with Alzheimer’s.  We lived cross country and so only saw them in person once a year or so, but the early changes were dramatic.  One year he could not bring up his wife’s name, only referring to her as “she.”  The next year he asked if he could invite a new friend to dinner (the “friend” was his reflection in the mirror).  The following year we joined them in Florida to celebrate their 50th wedding anniversary.  By that time the only activity he could do was to pace back and forth in their apartment, which he did over and over and over and over again.  Before we left for home, MIL gave over guardianship of him to the state of Florida and he was institutionalized.  He died four years later.  Around 1981 “The 36 Hour Day” was first published and so it was assumed that he had Alzheimer’s. 

 

Fast forward to 2015 and our 50th wedding anniversary.   Several months leading up to the big celebration, my husband had been exhibiting startling changes.  He couldn’t multitask, he couldn’t handle the bills, he couldn’t alphabetize, his executive function was no longer functioning.  He could read a page, but not remember what it said. Because of his father, we assumed it was the beginning of Alzheimer’s.  We saw a few neurologists, got a few brain scans and other tests but none of the doctors would give us a definitive diagnosis.  (I now realize that brain scans at the beginning of dementia can’t really diagnose because in the early stages there just isn’t enough damage for a brain scan to reveal. ) 

 

Eventually we went to an alternative doctor for a different medical problem.  This doctor routinely has his patients do a 23 and Me test and it turns out my husband does not have the gene for Alzheimer’s.  However, my husband has been a type one diabetic for over 50 years and has had minor heart surgery.  His father had a major heart attack preceding his dementia.  My husband’s only sibling, a sister, had a blood cancer for about ten years and before she died was suffering from dementia.  So vascular dementia appears to run in the family.  

 

My husband gained 50 pounds in the year he was in Viet Nam.  (that’s about a pound a week).  That’s how he happened to get diagnosed with the diabetes.  And so he is a disabled vet and has been, thankfully, getting his insulin from the VA all these last 50 some years.  But when I suggested to the VA that over time he’d also developed dementia they were slow to do any testing to confirm.  It took six years after he exhibited the initial cognitive problems before they did formal testing to confirm the dementia.  I got to sit in on the test and interestingly there were no clocks to draw, no counting back from 7, etc. etc.  It was more showing him pictures/diagrams of various situations and asking him questions. And now he gets a small stipend for the dementia that helps pay for occasional respite.  (which is quite a blessing).  

 

I know some people, especially young people, might not want to do a 23 and Me test because they wouldn’t want to know if they had Alzheimer’s early on.  But for someone who has senior status and suspects a problem, I’d definitely encourage them to do the 23 and Me test, to rule out Alzheimers.  It would at least help narrow down what type of dementia one is dealing with.  And if vascular dementia, like my husband, there are life style changes that could possibly slow down the progression.   

 

I’m hoping that during these last seven years that our family has been searching for answers, that doctors have realized that cognitive changes could also be vascular and routinely check for that possibility.

 

Thanks for “listening”. 

M1

Hi SM and welcome to the forum.  I'm glad you feel he is getting good care.  For the record though, not having one gene for Alzheimer's doesn't mean he doesn't have it:  just like most women who get breast cancer do not have the BRCA genes.  Our understanding of genetics is still pretty darn limited.  Mixed dementia is common, and you are right that certainly with diabetes, vascular disease is extremely common.  

The only way to know for sure is a brain biopsy, but for obvious reasons these are rarely done (either in life or death).  The 23 and me tests  are still pretty limited in what they test for--which is why insurance doesn't cover them.  As much as we have learned, we still have a long way to go.

You'll find a lot of practical advice on this forum, hope it helps in terms of taking care of your DH.  It's a tough road.