The topic for the 60th Edition of the Carnival of Genealogy is Alzheimer’s Disease. November is Alzheimer’s Awareness Month and it’s a good time to reflect on the impact that Alzheimer’s Disease (dementia) has had on your family history. An estimated 5 million people in the U.S. are living with Alzheimer’s Disease. A new case is diagnosed every 72 seconds. Undoubtedly someone you know will or has some form of this debilitating dementia. Alzheimer’s robs people of their memories and all that they could have passed on in the way of family history. What does that mean to you? If you are fortunate enough to have not been effected by Alzheimer’s Disease in your family, perhaps you will share the impact of another serious medical condition that has impacted your family. How have you gone about researching your family’s medical history?
Luckily, my family has been left untouched by this horrible illness that wipes out a person’s memory and leaves them debilitated and the family struggling to cope. My mother used to work for one of her local Senior Day Centers as a grant writer as well as being there to help the Seniors. During the day most of the people who were there were “dropped off” just as you would a child at a day care facility. These people were mostly living with family members who needed extra eyes on their parents/aging family members while they were at work. Because of Mom’s time working with some of these people afflicted with this progressive illness, she takes offense when someone who forgets where their car keys are says offhandedly “maybe I’ve got Alzheimer’s.” She’s seen what this disease can do and knows it is not humorous.
Our family has had it’s share of “Senior Moments” – heck, I’m not even 50, and I get them. I tend to call it the “busyness syndrome”. So busy in my daily life and thinking of too many things at once, that half the time I don’t remember what I’ve already related to people. So now when I begin a story, I always ask if I’ve said this before. What is worse is when I’ve neglected to tell someone the health condition, etc. of a relative and been called on it. I forget where the _____________ (insert anything) is but that’s just because I’m not as organized as I should be, and I’ve allowed myself to have too many cluttered thoughts and not care.
I’ve also been pretty lucky in learning about our family medical history. I have death certificates and oral histories about illnesses to know what I am predisposed to genetically. No epilepsy, no bleeding or autoimmune disorders. I do think it’s very sad for a person who has been adopted and can’t find that medical information. I think if anything else, medical history should be part of open records – even if the biological birth information is not. I also believe that the doctor’s office is not the place NOT to divulge information that could be crucial for your physician in making a diagnosis or researching other alternatives. If we can’t be a partner in our own medical care, who else will advocate for us?
My hope is that a cure can be found to slow or stop Alzheimer’s altogether. A friend of the family’s has a parent with Alzheimer’s. This person spends a lot of time each day visiting their parent and using a “script” as the memory of the person. Repetitiveness can be monotonous, however, I’ve witnessed the parent recall something that wasn’t said that same day and that gives us great joy to hear. I’ve also witnessed the slow decline of this friend’s parent and my heart hurts for this family as they watch their parent deteriorate. I consider myself, my parents, and my grandparents very lucky that we didn’t have to live with this disease but unfortunately not everyone is so lucky.
That is why it is so important – from a family history and genealogy stand point – to gather this information before the disease progresses – or before there are even any signs of it. If your parents are still fairly young and your grandparents are still living and have their memories, now is the time to gather that information before it is lost to either Alzheimer’s, other medical issues, or they are gone.