December 19, 2007, my husband, Todd, was diagnosed with ALS at age 43.
Todd was always the life of the party. His good looks and great sense of humor attracted everyone to him wherever he went. He was easy to love. He was an ironman of tremendous strength, an 82nd Airborne Army Ranger, making 72 jumps. After leaving the military and graduating college, he worked for the PGA Tour, loved to play golf and enjoyed fishing.
The 2 1/2 years of his illness were tough, but today, 7 years after Todd passed away, our son, Andy, and I can encourage others by affirming that we all share the same struggles. Only 6 months prior to Todd’s diagnosis, we had been in Hawaii surfing when one afternoon, he asked me to loosen the lid on his water bottle. I’m not sure if it was worry or discernment, but I knew something was wrong. We laughed it off that he was just getting old.
A good sense of humor would be a critical part of the next chapter of our life together.
I determined in my heart that I wouldn’t allow worrisome thoughts to possess my mind and render me completely useless because there were so many obligations. When a terminal illness comes into a home, life continues on with bills, groceries, homework, family and friends. The world doesn’t give you a pass. Todd’s disease progressed quickly and each day brought new frustrations for all of us. Todd lost the use of his hands and arms first, and later his legs. He was totally dependent on me. 70% of ALS spouses leave the marriage and as a caregiver, I quickly recognized that caregiving required a lot of forgiveness and forgetfulness. There was no argument worth having and the only thing that mattered was how we responded.
When couples take their wedding vows “in sickness and in health”, most of the time it never occurs to them they may be faced with taking care of someone that they don’t recognize. In some cases, ALS patients can also suffer from frontal lobe dementia. In the last year of his life, I began to see those mental changes in Todd, along with the physical. Although it was difficult, it was God’s gentle way of making it easier to let go. On the worst days, I did not take care of Todd simply because I loved him, but rather because I loved God. I recognize that not everyone can relate to this, but I had to trust the God that I believed in.
Finding purpose in a crisis isn't an easy process.
As children of a sovereign God, we are never victims of our circumstance. I found God chipping away all of the unnecessary junk that cluttered my life. God was bringing me to a place where I was vulnerable and in that vulnerability, He could use me. Privatization was meaningless. I had to learn to be transparent. I learned that self sufficiency was not an attribute and that I was inadequate on my own. I had to rely on help from whoever was willing. Solely focusing on God was the only way I could have the strength to endure each exhausting day of caregiving. There was no room for dangerous patterns of thinking. Doubt always lead to discouragement. Discouragement would lead to depression and depression would lead to disablement. Everyday I took one hour to myself (usually early in the morning or late at night) and chose to strengthen my physical endurance and get mentally renewed. At age 11, our son, Andy, knew that he was losing his father soon and I needed to assure him that he wouldn’t lose his mother, too.
June 24, 2010, Todd passed away at the age of 46.
I am so proud of the way he handled himself, with courage and a great perspective. He felt like he had been given a measure of time. He had lived without regrets, always making time for people and believed the best way to get your mind off your troubles was to help others. His mission was to be authentic, put people at ease with his sense of humor and leave a legacy. I miss him everyday.