Article Series

The Dementia Journey Part 1: Live Well

Article submitted by Joy C. Davidson, End of Life Coach, Pastor, Author, Speaker, owner of Joyful Transitions, LLC. Joy can be reached at 720-244-2660.

Many of us, if not almost all of us, have experienced a moment that will forever be etched in our minds. We know exactly where we were and what we were doing at that moment when life took a turn that we had not put on the map, a turn that we did not in any way expect. Perhaps it was September 11, 2001 – when the planes hit the buildings you or a loved were in, perhaps it was the moment of receiving a cancer diagnosis, or perhaps, as in my case, it was the moment you received a phone call telling you that a loved one had experienced a serious medical condition.

August 23, 2010 about 6PM was such a moment for me. I was on my way home from work – actually just a couple miles from home when my aunt called my cell phone. Expecting to have a chat about the latest happenings at the skilled nursing community in which she lived, I answered, and was instead told that she had just received a phone call telling her my mother had suffered a stroke. As the person designated to handle my mom’s affairs in the event of such an emergency and the only child available to assist her, I now found myself thinking about calling doctors to determine the severity, realizing that I would probably be taking over her affairs, and wondering when to start the 250 mile drive to Grand Junction, Colorado from Denver instead of thinking about exercising or reading a book. I also knew at that moment that while I had no idea what it looked like, my mother and I had a “new normal” and that life would never be the same. It was also at that moment, unbeknownst to me, my mother and I had started “The Dementia Journey”.

Like many of you, I used to hear about Dementia, Alzheimer’s – the most common form of dementia, Vascular Dementia – the second most common form of dementia caused by stroke(s), and other diseases affecting cognitive function and think “I have no idea what the connection or disconnect is, but the bottom line is that life is over”. How wrong I was!

Having walked “The Dementia Journey” for a year-and-a-half as of early 2012, I have met some great people (with and without the disease) and I have read some great stories like a couple I will mention from this article published online at the Canadian Healthzone on January 4, 2012 (Link to article - People such as Mary McKinlay and Bill Heinbein should inspire all of us.

When Mary was diagnosed with Alzheimer’s in 2006, her first thought was indeed “This is it. Life is over.” Then she researched living with the disease and developed her own website for keeping children and grandchildren informed of her news and experiences. Now, her website is a popular destination for other patients. She is a keynote speaker and successful fundraiser in Prince Edward County.

Bill Heinbein was diagnosed with early-onset Alzheimer’s at age 55 and told he probably had five useful years left. His immediate strategy became “simplify, simplify”. He called his partners at the accounting firm regarding his immediate decision to take early retirement from the firm and began to concentrate his mental energies on two things: his 220-acre farm with its 11 quarter horses and the Dixieland Jazz band in which he had played for decades. Ten years later, he is still leading a full life.

Through stories such as these or others that I have personally observed, I realized there were commonalities: The first one being an acceptance of the “new normal” and action to make it the “best it can be”. I also realized at the moment I received the phone call about my mother, I had made my own decision. “No matter what the outcome is, this is not going to control our lives and I will make it the best I possibly can for my mother and I.”

Ultimately, my mother survived a stroke that probably would have been fatal, except for the prompt recognition of the stroke by her friends and the quick administration of the clot busting medication at the hospital. This medication was able to preserve and restore gross and fine-motor skills. Nevertheless, she did develop Vascular Dementia making it impossible for her to live independently. She now lives in an assisted living community close to me. She is not able to do some of the things she used to do, such as aquaerobics or bowling. At this point, her short-term memory is gone and she repeatedly asks the same questions. Sometimes she even needs me to verify that my sister, who died less than four months after the stroke, is dead, as well as other details of her life that she used to know even just six months after the stroke. But, she still loves to go out to eat, she really enjoys going out for drives, she loves to have me visit her, and she loves to receive cards from family and friends, so I visit her a lot, we sometimes go out to eat and / or on drives, and I send her friends and family regular updates to keep them posted and to keep cards coming to her.

Is it hard to watch the deterioration? Yes, that is the “cold, hard truth” of dementia (as I call it) – a cold, hard truth that I will discuss in my next article. Nevertheless, I focus, not on what is being lost, but on giving us the “best new normal” I can.

More about Joy Davidson and Joyful Transitions, LLC

Founded in 2011, Joy C. Davidson and Joyful Transitions, LLC, are a voice of experience working with older adults and their families as they face changes, seek late in life purpose, and search for the resources and confidence to live a powerful life. Our support is available through speaking and educational presentations and curriculum.

© 2012, All Rights Reserved by Joy C, Davidson, Joyful Transitions, LLC

Posted March 2012 on