Sunday, November 11, 2007

November is Alzheimer's Disease Awareness Month

You know how people are compelled to look at a traffic accident? It's almost like a magnet that draws our attention. We both do and don't want to look at the same time. We know what we see won't be pretty but we find ourselves glancing over just the same.

That's the same sort of situation I find myself in with regards to Alzheimer's Disease. When I read about it I am both frightened and saddened by it. But I can't help going back to read about either. It draws me in, upsets me, and leaves me feeling down. But I go back to read again the next day.

I am one part fascinated by the disease and one part horrified by it. I wonder what my mom was going through and how much she was aware of. We never had a direct conversation with her where we said "Mom, you have Alzheimer's". In our family, ugliness and upsetting things were never talked about directly. All those times, over the years, when my dad beat my mom... we never talked about it. It was just smoothed over as much as possible and we just moved on. It was our family behavior pattern to not deal directly with problems. So when my mom began exhibiting the symptoms of Alzheimer's we never talked about it with her. We took her to the doctor, she was diagnosed with "dementia", and we just took it in stride. To my knowledge, the doctor never told her directly either.

My mom was very good at covering up her memory loss. She found so many ways to avoid saying "I don't remember" or "I don't know". The fact that she did so always struck me as evidence that she was aware of her memory loss and was embarrassed by it. After my mom died my brother told me that when he was going through her things he found little notes she'd written saying things like, "I can't remember my children's names". They weren't dated and they weren't expanded upon, so they don't tell us much. But they do suggest that she was aware of her declining mental state.

My mom's sister, Helen, went through the early to moderate stages of Alzheimer's Disease before she died in 2001. I don't remember Aunt Helen forgetting people's names or not recognizing them. She may have experienced a bit of that but she died before her dementia progressed to the stage where that was common. Still, we all witnessed a dramatic change in her personality and her mind definitely twisted her thoughts in bizarre ways. So my mom may have realized that she was suffering the same fate. I wonder if it frightened her to think that it was happening to her the way it frightens me to think it may happen to me. It's terrifying.

This week's news... "People who have a mother with Alzheimer’s disease appear to be at higher risk for getting the disease than those individuals whose fathers are afflicted, according to a new study by NYU School of Medicine researchers." Not a very comforting thought.

The United States Postal Service has announced that it is issuing a stamp next year to help raise awareness about Alzheimer’s disease as part of its Social Awareness stamp series (pictured above). This month, November, is National Alzheimer's Disease Awareness Month. It's a good time to learn about this devastating disease. A good place to start is the Alzheimer's Association web site.

Do you know someone with Alzheimer's disease? Do you worry about getting it yourself?

10 comments:

  1. Thank you, Jasia, for bringing up this uncomfortable topic. My paternal grandmother was diagnosed with this disease earlier this year. Looking back at some of her actions, it appears that she has had this for at least a year. Compound this with diabetes, where she must take her insulin on a regular basis, and you can see why this is so serious. Fortunately, we have an aunt who is a nurse who has been willing to live next door to her and care for her for now...a heavy burden, I'm sure.

    ReplyDelete
  2. I fear nothing more than losing my mind. So far, no one in my family has been diagnosed with it, and I'm terrified of being the first. Silly, I guess, to feel this way, but I do.

    ReplyDelete
  3. Jasia, Thank you for addressing the very sad and very real issue of Alzheimer's Disease. The saddest question my mother ever asked me was near the final months of her decline into Alzheimer's. She asked, "Where was I when you were growing up?" At that specific moment, she had no recollection of my childhood or of her being my mother.

    And everything I've read and heard about this disorder indicates just what you've stated: those of us with a mother who had the disorder have a higher change of contacting it ourselves. In fact, a neurologist I consulted said that his mother too had the disease --- and he predicted that he would have it if he lived long enough --- and then he predicted the same for me.

    So read on --- get drawn into to those articles and books on Alzheimer's Disease --- educate yourself. As I approach my 69th year I'm watching more and more for it [Alzheimer's] to catch up with me. I am not morbid nor sad --- just watchful.
    TERRY

    ReplyDelete
  4. Wow. This posting brought back so many memories of my mother's diagnosis with dementia at age 58 almost eight years ago. And the description of how your family handled most problems is exactly like mine - except my mother's Alzheimers was the one that stopped that process of hiding and keeping secrets.

    I had to have some very difficult discussions with Mom, realizing that at times she wouldn't understand or remember. We discussed power of attorney, then having me take over her finances, then taking away the car, etc. It wasn't easy and I was often tormented before, during and after the talk. The hardest one was to tell Mom on Mother's Day that I had to find a "facility" for her to move into later in the year. Facility was a nice term for nursing home.

    I was lucky to have family members that helped me out. And I am lucky now to have friends like you, Jasia, to share these issues with. In fact I think that's how we first made contact - through my posting on whether or not to take an Alzheimer's Blood Test when it is developed.

    All I can say is keep blogging and writing about it. Writing about my journey of care for Mom has been cathartic. It has also helped other people just starting that journey.

    I also recommend a book entitled Death in Slow Motion by Eleanor Cooney. Amazing story of her mother's Alzheimers - sometimes harrowing, sometimes hilarious, always honest.

    ReplyDelete
  5. I can remember my grandmother's demise. I was in my late teens and we referred to her as "Grandma Forgetful." To this day, I still think of her that way. The sad thing is she wasn't always that way. She was a creative, loving woman, yet, we tend to remember her as we knew her last. My father would not go to see her in her final years because he did not want to remember his mother that way. This disease does horrible things, not only to the person afflicted, but to entire families. Thank you for writing about it.

    ReplyDelete
  6. Alzheimer's seems to strike at the recent memories first. We interviewed a lovely woman from Louisiana recently for a video biography. Despite her daughter's concerns, she had a marvelous recollection of the old days and knew all the people in the photos we showed her. Anyone facing this terrible condition in a parent should themselves record as many stories as possible - while they can.

    ReplyDelete
  7. My Dad with progressive dementia began wandering so he was forced into a 'locked down facility'. It prompted my husband & I to move close so we could take him out for the day and have some quality of life in his last season. My mother in law had died from Alzheimers so I thought I was prepared. No it is "losing your hero while they're still here". A friend doctor gerontologist said it is the disease of 'losing oneself' as our memories are what make up ourselves. I was blessed this past Sept as I was at a health symposium where a 3 yr research was released where the findings found an average of 50% improvement in memory and learning. Help is on the way & it couldn't come at a better time for my family. For more info go to www.rbclife.com/me/ashcroft for the video

    ReplyDelete
  8. Hi again Jasia, Well now my mom has Alzheimers. She just moved into assisted living facility after my dad's death. I'm even more curious as to how we may be related.

    sincerely,
    carolyn
    PS Though I have only scratched the surface, this blog is incredible. What a wonderful service you give to people.

    ReplyDelete
  9. I don't think I have placed a comment to an older posting before...but as I was blog trolling I came across yours, the side bar on Alzheimer's caught my eye.

    Similar feeling bar through me as I read.I too wonder...my mother's family is terribly affected by this ugly disease.Out of 12 siblings 5 have it and grandma too.
    Mom shows no signs,funny our family too is hush hush...if you don't talk about it,it may go away???
    Glad for "older post"
    I'll grab the picture for this up coming Nov.2010
    Thanks
    Tracy

    ReplyDelete
  10. My grandma had Alzheimer's, too. It was sad to see how people went from treating her with respect to treating her like a non-person. One person even told me "You don't have to talk to her. She doesn't know what's going on anyway." This both angered and hurt me more than that person will ever realize. My grandma's mama and sister both died with brain tumors. Now, at 46 years old, I am dealing with memory issues that scare me. It could be tumors, it could be Alzheimer's...it could just be stress. In any case, I am afraid of what is happening to me and what will happen to me when people decide that I am no longer a person, like what was decided about my grandma.

    For the record, I kept talking to my grandma anyway. The day that my grandpa died, my grandma called me "mama". At the time, this worked a real number on my head and heart. But, after a few years of processing, it was a real blessing to me that she had called me "mama". It showed me just how much my grandma loved me. Who makes everything better? Mama...and she called me "mama". I loved my grandma then and will always. She never ceased being a person to me. The person that said that has no idea what she missed by treating grandma that way.

    I'm terrified of becoming a "nobody" to those that say they love me.

    ReplyDelete