Tuesday, September 11, 2012

Sharing the Journey: Is it Positive or is it Exploitation?

Yesterday, a link was shared on a dementia support facebook page which I belong to. I followed the link and read an article written by a woman about her mother's struggle with dementia. It was beautifully written and depicted some of the challenges and heartaches she's faced as her mother's caregiver.

I scrolled down to read comments by other readers, most of whom agreed with the beauty of her writing as they shared some of their own struggles in dealing with this heartbreaking disease. One critic, however, had a different opinion after reading her article. He wrote,

"The writing was excellent but I was left with this horrible feeling of having invaded your mother's privacy. It's as if you allowed all these strangers to peer into your mother's most vulnerable, private moments. And to what end? To explain how you coped? Everyone copes in their own way...I know it's completely your decision to expose your mother in this way. But I wonder what she would think of this."

This comment really bothered me and I thought about it all throughout the day. I suppose it's because I, too, have opened up in sharing our moments with my mother. It caused me to sit back and ponder, am I invading her most vulnerable, private moments? And "to what end" am I doing this? Am I wrong for opening up about this?

I thought about it, long and hard. There is a part of me that wonders if I should be so candid and public about the journey are enduring. I tend to be a self-doubter, so I admit I felt a little guilt and doubt about what I am doing. As I continued to think (and maybe even fret a little bit) about it, several thoughts came to my mind to reassure me that this is what I should be doing.

As this critic commented that strangers are viewing her mother's most private, vulnerable moments, I realized that I am not sharing every moment at all. What I share is really only the surface. There are far more behaviors and things that she does/says that I could write about, but I am using my discretion in what I post simply because some things are embarasssing to bring up. Truly, I am not writing about the craziness of my mom; I am writing about the alien that has taken over her body, the alien known as dementia.

I have only the best of intentions with this. That is what I want my readers to understand most of all. I am not writing about this for any personal gain. I am not writing about this to exploit my mom in any way. In many ways, this isn't even my mom that I am writing about. This is about a disease that has overtaken my mom. While yes, I write about her behaviors and her struggles, what people need to understand is that this is not my mom, at least not the "Deana" we all once knew and loved. While she might be embarassed if in her normal frame of mind over the things that have transpired, she is not in her normal frame of mind any longer and she has no control over herself. She is no longer accountable for her actions.

THAT is what I am trying to teach people in sharing this journey. I want people to understand what this disease does. How many times do we encounter someone who is a bit "cooky" and do not know what to think or how to react? I want people to gain an understanding and empathy to those they encounter who suffer from this disease. I want to offer a place of support for those who are going through the same thing. And only they can understand what I mean by that; it's a difficult thing to go through and for most of us, it helps to read and share with others who are going through the same thing.

Knowledge is power. We cannot learn if we do not share. If writing about this journey can help anyone at all in their own personal journey, then it is worth it to me to write. My mom is an educated woman, she has always enjoyed sharing her knowledge with others. I do feel that she would be proud, and not ashamed, of what I am doing. Maybe I'm off base here, but these are the thoughts that continue to come to me when I find myself contemplating the things I write.

6 comments:

  1. Beautifully said!

    I think that Mom would be proud of what you have done, not embarrassed. As you have said, she is not herself - this is an "alien" that has taken her over. And yes, we who know Mom on a more private, personal level know that you have used your discretion.

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  2. I just came upon your blog and can appreciate what you are experiencing. My Mom has FTD and is almost at the same stage as your Mom. Reading information in blogs such as yours has been SO helpful to me not only for the info. (which is important) but also to know that we are not alone. Thank you for writing this and please keep up the good work.

    Sincerely, Meg

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    1. Thank you for sharing that Meg. Helps me to keep perspective on why I started this :) Please keep in touch and feel free to share about your mom (whatever you feel comfortable with). It's good to know that we are not alone in what we are experiencing! Thanks for reading,
      Cassandra

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  3. I want to thank you for sharing your story. My mom was diagnosed with semantic dementia just 6 months ago, although the first changes happened not so many years after my dad's death in 2005. It has been so scary for my brother, my sister, and me to face the future without knowing what it will look like. Our mom is probably 6 months to a year "behind" yours. Reading your mom's (and your) story is scary and yet, in some sense, reassuring. Thank you for writing this blog, and please, keep it up.

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    1. Thank you for sharing, I'm glad you found me! :) It's hard to find others with the exact form of dementia (semantic) because it is so rare. It sounds like your mom is progressing slower than mine. We can trace symptoms back to 2007. They say that it's more aggressive when it hits younger, and she's only 51. I would love to keep in touch with you and I'm here to talk if you ever need to! I also have a facebook page if you'd like to stay more closely connected. www.facebook.com/journeywithdementia Looking forward to hearing from you again, take care!
      Cassandra

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