Tuesday, April 19, 2016

The Word Is Out But It's Just Not Enough

With nearly every post to this blog I receive a comment from someone that is dealing with, or has dealt with Alzheimer's and it's brutal destruction of a family member. I don't know why I'm surprised that so many people can relate. According to the World Alzheimer's Report 2015, there are an estimated 46.8 million people world-wide with dementia and they project this number will double over the next twenty years. 

Last week the Today Show aired a segment with Actress Kimberly Williams-Paisley talking about her new book " Where the Light Gets In: Losing My Mother Only to Find Her Again," about the struggle with her mother's dementia. 

I applaud Kimberly Williams-Paisley for sharing this very personal story. According to the interview she used her book as a coping mechanism much the same way I use this blog. Her story is just like the story of many other families dealing with dementia, however, for many other families it's only half the story.

The families I am talking about are the millions of unpaid, in-home caregivers that sacrifice almost everything to care for a loved one.

It's not only the financial burden, but the time, the solitude, the loss of sleep and the stress of being a caregiver. With all that a caregiver gets to watch the daily decline.

Decline, what an underrated description of dementia. Dementia has ripped away all that Mom was. leaving behind only a hollow shell.

In Mom's case when her dementia first became evident, she called upon a family friend to help her pay the bills and complete the tasks she would forget. That had varied results and I had to step in to correct many things that were over looked. When we tried moving Mom into assisted living the facility implied Mom would be a burden to the other tenants and would need placed in the Alzheimer's lock-down area.

Being in a lock-down Alzheimer's ward was not the right choice for Mom, so we made the decision to move her in with us. In the beginning things were fine, Mom could do nearly everything to care for herself, other than cook and drive safely, including carry on a great conversation.

Those time were good, but today dementia has stripped everything from Mom both mentally and physically. She rarely speaks, if she does try, she can't get it out. There is no facial recognition of anyone, even me--at times she thinks I am her husband or brother, but never her son.

As of today, Mom still has a small degree of continence, she can still walk to and from her room, and she can still feed herself. Other than that, everything she was has been stripped away by dementia.

On top of all this, there are family and friends that have absolutely no understanding of dementia and it's a constant barrage of questioning why we don't take her for lunch dates and other activity's. It even reached the point once that one of her friends called our local Sheriff's office to do a welfare check on her.

Bottom line, what do I wish for today? I wish there was a real cure for this disease, but I also wish that mainstream media would dive deeper into the subject and show the world the real horrors of dementia.


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