After living through Daddy’s Alzheimer’s journey and learning so much about it from Mom, I thought I had a pretty good handle on it. I read The 36-Hour Day and learned more. I’ve spent time on the Alzheimer’s Association forum and other caregiving forums and read lots of information about the Alzheimer’s and dementia and the progression of the disease. The point of view never occurred to me.
Recently, my daughter who has epilepsy was watching a show on TV. They were discussing Alzheimer’s and they put some sort of a hat on a person that allowed them to interrupt the electrical activity in that person’s brain. They then gave the person instructions to carry out. My daughter identified with the outcome immediately because her absence seizures cause the same type of difficulty in carrying out a plan or following instructions. As she described the experiment to me, I also identified with the outcome. Many, many times we have watched our daughter walking around looking much like a pinball in a pinball game – popping here and there but not accomplishing anything.
For years I cared for my daughter while she dealt with the seizures. I learned everything I could about it, I went faithfully to the parent support group, and over the years became better and better at handling her care. The Epilepsy Foundation was an excellent source of information, even providing films and stories from the point of view of people with epilepsy.
So what has been missing from all my forays into learning about Alzheimer’s? My Mom’s point of view! What does it feel like for a person experiencing Alzheimer’s? Everything I have read has been from the caregiver’s point of view. The information is excellent but this past week I realized that all that information stops short of actually helping us really get a feel for what our loved ones are going through.
A particular book was mentioned a couple of times at my Alzheimer’s support group. I finally read it last week. Oh my! Did it pack a wallop!
I strongly suggest that everyone dealing with this disease – or the possibility of it in your family – read Still Alice by Lisa Genova. It is a novel written from the Alzheimer’s patient’s point of view. Yes, it is a novel, but Lisa Genova’s Ph.D. in neuroscience from Harvard allowed her to research the subject from all sides – clinical, caregiver and most importantly, patients.
She tells the story of Dr. Alice Howland, a world renowned Harvard professor, diagnosed with Early Onset Alzheimer’s Disease. Alice’s first person account pulls you in completely and lets you have that view into the impact of the disease. Sometimes sad, as you would expect, the account also provides moments when you can laugh with Alice.
Most importantly, taking the journey with Alice will build empathy in your heart for anyone dealing with the disease first hand.
The book is available from Amazon http://www.amazon.com/Still-Alice-Lisa-Genova/dp/1439102813/ref=sr_1_1?ie=UTF8&qid=1315872781&sr=8-1
No comments:
Post a Comment