by Bill Bednarczyk
I will never forget a particular day in February, just a week after my wife turned 59. Colette and I recently had an extensive visit to the Mayo Clinic. We were anxiously waiting for the results when we got the call on this day. It was the neurologist who was leading the diagnostic team to determine the cause of Colette’s bizarre behavior and physical changes over the last few years. Within minutes we got the answer – Progressive Supranuclear Palsy (PSP), an extremely rare neurological disease. He apologized and said there was no easy way to tell us how our lives would be changed forever.
The best way the neurologist could describe PSP was to say it is similar to a combination of MS, ALS, and Parkinson’s without the tremors. Colette interrupted with, “Oh good, the Trifecta.” You had to know her to appreciate the timing of her humor. The neurologist proceeded to tell us the expected life span and thought Colette was at about year six. He ended the diagnostic discussion by saying that this is “some really ugly stuff,” and then talked to us more personally.
The neurologist told us what to expect, the progressive nature of the disease, and even prepared us for the possibility of Colette entering a care facility. He finished by encouraging Colette to find the courage to give me permission to keep living life during this journey. “Bill, you must allow yourself to get a life and assure Colette you will not abandon her”, he said very directly. We talked about the financial, emotional, physical, relational, and family burden that would immediately impact us. He told us the job of care provider is stressful and is 24/7. It is not unusual, he emphasized, for the care provider to develop their own health issues, to withdraw, retreat from social interaction, and to lose a sense of self.
The silence was deafening as tears rolled down our checks. The unknown was frightening. We hugged like we never hugged before. The warmth, hope, and love we experienced for each other at that moment would not be felt with that intensity again.
The uncertainty was gone. It had a name – PSP. I now knew I was not crazy, was not going through a mid-life crisis, and that Colette’s apathy over the years was not intentional or spiteful. In fact, I learned later that she was petrified and felt out of control about what was happening to her. This gracious, fun loving, quick-witted, bright, gourmet cook and terrific mom was totally oblivious about how the changes in her the last few years had alienated those to whom she was closest.
As we worked through our emotions, we came to realize we needed a plan. We decided to sell our home in Florida and drive back to our hometown of Minnesota. The drive was filled with laughs and chatter about the great memories and friends we were leaving behind. I didn’t realize it then, but my wife was starting a transformation to an acceptance of the disease. What a gift she was about to bestow upon me.
During the next few months, Colette’s symptoms quickly accelerated. She experienced difficulty in walking, her choking increased, and her speech was barely understandable. It was as if she had given herself permission to let go and allow the disease to take over. Through all this and with Colette’s encouragement, I started on the next phase of our plan, which involved my own health and attitude. I continually reminded myself that Colette’s care and safety were at risk if I didn’t take care of myself.
The highlight of that year was our last trip together – a spiritual pilgrimage to Medugorje, located in Bosnia and Herzegovina. Her attitude and physical and spiritual strength were remarkable and amazed our fellow travelers. It was during this period that I believe her transformation to accepting the disease was complete – truly the miracle of the trip.
After our son’s wedding the following year, Colette began a downward spiral. Increased stiffness, bouts of aspiration, eye sight deterioration, more falls, wheelchair bound, and she became more agitated. It was becoming more difficult for me to give her proper care, and she was becoming more fearful.
I asked if she felt safe at home, she shook her head to indicate no. Mustering up the courage I asked, “Colette, do you want to find a care facility?” With her eyes welling up, she nodded yes. After much searching, we found a residential group home that specialized in neurological diseases. As the move-in date approached, the feelings of permanent loss weighed heavily on our hearts. For me, this was the moment when my mourning began. Due to the disease, Colette lost the ability to verbally express herself. The eyes, the touches, the hugs, and the tears told the story. The void is overwhelming to this day.
Nearly two years to the day she after she left our home, I lost my heroine, my confident, and my teacher. Those two years were filled with attempts at alternative therapies, including a stem cell transplant, hours of hyperbaric treatment, supplement regimes, and chair exercise routines.
Yes, there is life after this horrific disease. The five years since Colette’s passing have gone quickly. Mostly because I have totally embraced the lessons she taught me and the gift she gave me during her battle with PSP. She released me to go on living, treasure the memories, and begin a new journey. She taught me that it is my choice if I choose to live life. The lessons about gratitude, patience, acceptance, selflessness, and understanding where well taught. She never blamed or became the victim. Most of all, I will always remember her wonderful sense of humor. As we all gathered in her room during her final hospice hours, Colette was able to grasp a Stoli Martini in her hand and raise the glass ever so slightly to celebrate her life.