I Remember and Pray I Never Forget
As Rose Kennedy said, “Life isn’t a matter of milestones but moments” and some days include so many special moments that they are forever emblazoned in your mind. September 22, 2012 was one of those days for me. It wasn’t too long ago but in many ways it feels like a lifetime ago.
I remember that day vividly. My family had all gathered in our hometown to celebrate three special things. It was the day before my dad and my step-mom Mary’s 35th wedding anniversary and a week before my nephew Hudson’s second birthday so we had two parties. The first was a surprise luncheon to celebrate Dad and Mary’s anniversary and then we had a cookout that night to celebrate my nephew’s second birthday.
The parties were the icing on the day. The main reason we gathered on that day was to participate in the Walk to End Alzheimer’s™.
It was a beautiful sunny day and we gathered on the grounds of Wofford College in Spartanburg, South Carolina to participate in the Walk to End Alzheimer’s™ and to support my step-mom Mary. Before I tell you more about why we were there to support Mary, I need to share a little of the backstory.
We had known for a few years that Mary had Alzheimer’s but she had never accepted or even acknowledged the diagnosis until December 31, 2011. That is another day that is seared into my memory. I called my dad and as soon as he answered I could tell something was wrong but it was obvious that he couldn’t speak freely. He called me back about 10 minutes later and told me that Mary had cried through most of the night and wouldn’t answer when he asked her what was wrong. Finally the next morning – that morning – she had approached Dad and asked him,
“How long do people with my condition live?”
Dad responded by asking, “What condition is that?” and with great sadness Mary said, “Alzheimer’s.”
Dad was caught off guard, as she had never acknowledged that anything was wrong. He told her that none of us know how long we will live but we need to take care of ourselves and follow the doctor’s suggestions. By this time, she was already taking medicine to try to slow down the Alzheimer’s that had likely been in her body for years, maybe even decades, but she thought the medicine was just a vitamin for her brain.
That was the first of many “fiblets” we decided we could live with.
At least Dad now knew why she was so upset and after that call I knew as well. It was New Year’s Eve – a time when most people are celebrating and excited about the potential the New Year represents – and tears streamed down my face and my heart broke as we ended the call. I am a caretaker and a fixer at heart and I couldn’t fix this situation. I couldn’t remove Mary’s pain.
Who wouldn’t cry all night and be devastated
upon realizing she has a terminal diagnosis?
And I couldn’t remove my dad’s pain as he watched his wife come to accept the terminal diagnosis he had been grieving without letting her see his sadness. I couldn’t fix the situation but thanks to a random game show I had watched a few days earlier I knew where to turn for help. While flipping around TV channels, I had stopped and watched a game show. The combination of a word game played by participants wearing purple (my favorite color) shirts pulled me in. It was “celebrity week” and the contestants were various celebrities playing to win money for the Alzheimer’s Association™ to help fund their support of research to find a cure for Alzheimer’s. I watched the show, played along from home and then went on with my day without thinking further about it.
I was desperate to help ease Mary’s pain and not sure what to do when the game show popped into my mind. I went online and found the Alzheimer’s Association’s website. I was excited to see that they had an office in Spartanburg, South Carolina. I called just hoping they could tell me who to call for help.
That phone call was triggered by a horribly ugly disease and yet that call began a beautiful relationship between my family and our local Alzheimer’s Association team.
As we learned more about Alzheimer’s and with my step-mother now aware of her diagnosis (unfortunately, that was short lived as she soon reached a point where she announced that she was cured – if only that were true!), we formed the Believe Team and signed up to participate in the Walk to End Alzheimer’s. We did so because we understood that while Alzheimer’s started by robbing Mary of her memories it wouldn’t stop there. While we were told that, short of a miracle, Alzheimer’s would eventually rob her of her ability to talk, walk, swallow and eventually breathe, it was hard to imagine at that point since Mary seemed okay physically. We knew time was not on our side so we focused on providing Mary with the best quality of life possible, helping raise awareness and money to help fund research to find a cure.
A couple of months before our first Walk to End Alzheimer’s, one of the ladies at our Alzheimer’s Association office called me and asked me if I thought that Mary would be willing to speak at the ceremony that kicks off the Walk to End Alzheimer’s. I regularly speak to groups of all sizes and I see an invitation to speak as an opportunity to share your story and spread your message but I knew that Mary did not share my passion for public speaking. I asked her how large of a crowd they anticipated and when she said that they expected around 500 people, I thanked her for asking and told her that I could not imagine Mary, who loved to laugh but who shied away from being the center of attention, agreeing to speak in front of that many people. However, I promised I would ask her. I talked to her everyday on the phone but I waited until I was with her and my dad in person and I told her about the call and the invitation to speak. To my surprise, Mary said, “Sure, I’ll speak.” She went on to say what she would want to tell them. Thankfully there was a pad of paper nearby so I grabbed it and quickly wrote down what she said. I later typed my notes – her words – in a big font for her.
I couldn’t have been more proud of Mary as I stood by her side as she spoke to an audience of more than 500 people on September 22, 2012.
She read the words she had told me a month before, which I had typed for her, and she delivered the message that she wanted people to know. In a nutshell, she reminded everyone in the audience, including me, that:
We need to live every day and make each day count.
Despite the fact that we had gathered to raise awareness of a terminal disease and to honor those whose lives it had stolen and impacted, September 22, 2012 was a great day as a number of our family and friends joined the Believe Team as we supported Mary and participated in the Walk to End Alzheimer’s.
Surprise! Happy Anniversary!
After the Walk, we told Dad and Mary that we had already told everyone to meet us at one of their favorite restaurants. What we didn’t tell them was that we had planned lunch as a surprise anniversary party to celebrate their 35th wedding anniversary, which was the next day. With the help of family and friends, we celebrated their 35th wedding anniversary one day early. Had we not told Mary it was their anniversary she would not have known it as dates on a calendar no longer registered. By then, she didn’t even know what month it was but she did ask why we had her wedding album there at the restaurant. We were blessed to celebrate 2 more of their wedding anniversaries before Alzheimer’s claimed Mary’s life but thankfully love never dies.
Reflections
The following Tuesday I was asked to speak at a local government meeting where a number of state and national politicians were present and were considering funding to find a cure for Alzheimer’s. As I thought about what I wanted to tell them, I reflected back on the events of the Saturday that had just passed - September 22, 2012 – and a number of thoughts passed through my mind:
- First and foremost, I was overwhelmed with a sense of gratitude. Despite Alzheimer’s hovering over the day:
- The weather was beautiful.
- Mary did not get nervous and although she had to read her notes slowly she read them and said what she wanted to say.
- We felt the love and support of friends and family who were with us in person and those who were there in spirit.
- Secondly, as we celebrated my nephew’s second birthday, I prayed that he never has to take care of his mother (my sister) the way she, our Dad (who was her 24-7 caregiver), the rest of our family and I were taking care of Mary, his grandmother.
- Finally, I thought:
That was a day that I’ll never forget – unless, God forbid, I too have Alzheimer’s.
Within a year after the day when Mary read her message to the audience at the Walk,
Alzheimer’s had deprived her of the ability to read. She could no longer read the novels she loved or even read kids’ books to her grandchildren. Over the next year Alzheimer’s stole her vocabulary as she struggled to find words. Eventually it stole her ability to speak, to walk, swallow and breathe. She died from Alzheimer’s on December 23, 2014 – 9 days after her 69th birthday.
September 23rd is Dad and Mary’s wedding anniversary. Even though Mary is no longer here on Earth to celebrate with Dad, it’s still their wedding anniversary so
Please join me in remembering Mary and in honoring my dad who cared for Mary 24-7 in the years prior to her death and in wishing him a happy anniversary.
Witnessing Alzheimer’s destroy lives is a big part of my reason for founding Life1440 with the mission of helping people create the lives they want to live. As Mary reminded us:
We need to live every day and make each day count.
- Lisa Johnson
