The Gifts I Was Given: Our Journey With PSP

I will never forget a particular day in February – just a week after my wife turned 59.  Colette and I had recently finished an extensive visit to Mayo Clinic and were anxiously awaiting this day when we got the call. It was the neurologist who was leading the diagnostic team to determine the cause for Colette’s bizarre behavior and physical changes over the last few years.  Within minutes we got the answer: progressive supranuclear palsy. He apologized but said there was no compassionate approach to telling us how our lives would change, today!

The best way he could describe PSP was to say it is somewhat 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. He proceeded to indicate the expected lifespan and thought Colette was about year six. He ended the diagnostic discussion by saying this is some really ugly stuff. He then talked to us more personally.

First, he talked about what to expect and the progressive nature of the disease. Even preparing us for her possibly 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. He talked about the financial, emotional, physical, relational and family burden that would immediately impact us. “It would serve no purpose,” he said, “if you should precede Colette in death leaving her care to others.” 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 for each other we experienced at that moment, would never be experienced with that intensity again.

As we worked through our emotions, we came to realize that we needed a plan. The uncertainty was gone. It had a name: PSP. I now knew I was not crazy, I was not going through a mid-life crisis, and that her apathy over the years was not intentional or spiteful. In fact, I learned later that she was petrified and felt out of control as to what was happening to her. This gracious, fun loving, quick-witted, bright, gourmet cook and terrific mom was totally oblivious that the “changes” in her over the last few years had alienated those to which she was closest.

The plan was quite task driven. This type A, self-employed, risk-oriented business guy was not going to lose this challenge!

After selling and saying goodbye to our Florida home, we headed back to Minnesota. The drive home was filled with laughs and chatter about great memories and the friends we were leaving behind. I didn’t realize it then, but my wife was starting the transformation to acceptance of the disease. What a gift she was about to bestow upon me.

During the next few months, Colette’s symptoms accelerated at quite a pace. Difficulty in walking, increased choking and harder to understand speech. 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 second phase of the plan: “Care provider Health & Attitude.”  I continually reminded myself that phase one, “Colette’s Care & Safety,” was at risk if phase two was never EXECUTED.

The highlight of that year was our last trip together. We took a spiritual pilgrimage to Medugorje, located in Bosnia and Herzegovina. The attitude, physical and spiritual strength she exhibited to our fellow travelers was remarkable. 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, eyesight deterioration, more falls, wheelchair-bound and increased agitation. 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 “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 heavy in our hearts. For me, this was the moment when my mourning began. The tragedy of the disease is she had lost the ability to verbally express herself. The eyes, the touches, the hugs and tears told the story. The void is overwhelming to this day.

I lost my heroine, my confident and my teacher nearly two years to the day she left our home, August 27, 2010. 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. She played every inning of the game.

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 gifts 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 were 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.

Written in honor of my wife, Colette Bednarczyk (1947-2010) by her husband, Bill Bednarczyk.

8/3/15 

Gifts to this fund will directly support the Colette Bednarczyk Family Respite Endowment, which provides in-home professional aid to those families who otherwise couldn't afford it.