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Please tell your kids...

Posted Wednesday, November 19, 2008, at 12:33 PM

This is National Alzheimer's awareness month. It was proclaimed by President Reagan 25 years ago to help keep this brain illness on the national spotlight.

My dad's body gave out two years ago this month from dementia and its' complications. His mind was a victim long before that.

I believe that this is a "family" or genetic illness on my dad's side. My grandmother appeared to suffered from this. I can remember last time we visited her house she asked like ten times over lunch one day if I wanted mayonnaise. I was just like 14 and hadn't been around anyone really that suffered from a brain illness. I had no clue what was going on at the time. Dad just shut off when I tried to ask about it later on.(He wasn't terribly forth coming about that sort of stuff. In fact it took him years, to really tell me about how close he came to dying with the cancer he suffered from. When I asked him why, he said he didn't want me to worry.)

One of my great aunts also suffered from dementia and was in a nursing home for years, if memory serves me well on this. My dad's youngest sister has recently been placed in a nursing home because of she can no longer care for herself. But thankfully not every one in the family is affected, so far as I know.

So... I have a sneaking suspicion that the genetic cards may be stacked against me on this one, so to speak. My point here isn't to be creepy or anything but what is frustrating about my dad's illness is I know very little about his medical history.

Dementia is an insidious disease. Now, in his 'right' mind, Dad may have told me, eventually, had he been able to. My mother got lost in his disease as well and as his primary care giver had control of the information. With the information privacy laws, I could not call his doctor or the nursing home to get any information because I was not given permission by my dad before he was ill or afterwards by my mother. You know, those complicated family issues things, can and do prevent the sharing of this type of information. I don't have any biological siblings so it isn't like I could find out that way.

What is frustrating is, I believe my kids have the right to know their extended family's medical history - the good, the bad and the potential ugliness.

I am no expert but a case could be made that genetics, environment and personal lifestyle choices all add up. If I could give my kids the full medical history picture then it would be up to them to make the choices that could potentially help them and their own kids live healthier, longer and more productive lives.

So girls.... you will get the truth as much as I can give to you and nothing but the truth, verbal and written... whether you want it or not.

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If it helps people understand sharing medical information with their families is important that is fine. That is definitely the point I want to make.

-- Posted by coolidge on Thu, Nov 20, 2008, at 11:12 AM

Hi, I completely agree, telling your children about your medical history is very important. I too have a parent (my father) with Alzheimer's (early onset) and so I know how worrying it can be not knowing if it might be hereditary or not. I hope you don't mind but I posted your blog link on my own site: http://www.dailydementianews.com

in the hopes of spreading the message...

-- Posted by TouchedByDementia on Thu, Nov 20, 2008, at 3:00 AM

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