But be prepared for the worst.
Sure, it’s a cliche’. But you know what they say about cliches’ — it became a cliche’ for a reason. The phrase sums up what I’m about to say about dementia.
The hardest thing about living with Lewy body dementia or any fatal disease is the unknown and dealing with that psychologically.
Will my brain damage progress slowly with controllable symptoms until I die peacefully (if that’s a thing) in my sleep?
Or will I shout, scream, accuse my wife of seeing other men or trying to poison me? All stories I’ve heard from caregivers and patients.
Will I be incontinent, impolite, and insulting, one who wanders out the front door and disappears? As Bob Dylan wrote,”No direction home, a complete unknown.” Will I be a heartbreaking shell of the man who was a father, son and husband?
When the word got out through my columns, I began hearing lots of stories. I have heard stories from friends, neighbors, in online support groups, emails from strangers. Some people run down in explicit detail how their loved one was at the end.
“He was in extreme pain,” one person wrote me. Another said she wouldn’t wish the disease on her worst enemy. I’m so sorry Mr. Oliver, another wrote.
I’m try to process this.
Many folks living with dementia or caring for a loved one with Lewy body, Parkinson’s or Alzheimer’s want information. And this is where I see light.
Certainly everybody can decide for themselves how to handle this — until you can’t. I chose to come out in public early with my diagnosis in an effort to raise awareness of this little known form of dementia. But my advice works on a broader scale, I hope.
Learn what you can about the disease, what can happen from best to worst, from living a full, relatively long life to sitting in a nursing home blank faced and unresponsive, not even knowing your daughters’ names as they stand crying before you.
This is serious.
Don’t be afraid to do the research, to name the disease, to listen to people’s stories. But you are not obligated. OK, you might say at some point: I get it. My brain is dying which controls everything I am, my perceptions, my memories, my motor skills.’ That doesn’t sound good. Talk to your friends and loved ones openly and make a plan for the worst.
I was diagnosed at a relatively young age for Lewy body — age 57. Now 59, I have progressed slowly due, in part to medications which were developed for Alzheimer’s and Parkinson’s patients. (That there are no specific drugs developed for Lewy body dementia I see as a sign the disease is flying under the radar, and that’s a key reason I am trying to spread the news and keep up the pressure to find a cure for Lewy body dementia.)
Once you know how bad it can be, you can begin to expect the best.
When I was young I remember my parents had a book called ‘The Power of Positive Thinking,’ a title that kind of made me roll my eyes. But I’m thinking there may be something there.
“Stand up to an obstacle,’ wrote Norman Vincent Peele decades ago. “Just stand up to it, that’s all, and don’t give way under it, and it will finally break. You will break it. Something has to break, and it won’t be you, it will be the obstacle.”
Exercise, treat yourself to healthy but delicious meals, go see something you haven’t seen, write about your life, engage in a community of fellow LBD patients, or just friends, family, faith-based groups.
And I’m no Norm Van Peale but I offer up another suggestion:
Lewy body is in your brain, right?
Have your brain tell Lewy to GTF out.
This is an opinion column by Mike Oliver who writes for AL.com about his fatal brain diagnosis and other life issues. See his Living With Lewy Body blog at www.myvinylcountdown.com
BRAVO!!!!