 January 2018 |
In June of 2016, my wife Alicia started developing symptoms that in February of 2017 would be diagnosed as ALS.
On February 27, 2017, she was admitted for nursing care to the newly opened NeuroCare Center at the Charles T. Sitrin HCC in New Hartford, NY.
The NeuroCare Center had opened only six months prior to Alicia's diagnosis with the sole purpose of caring for those with ALS or Huntington's Disease.
Alicia had a rapidly progressing form of ALS known as Bulbar Onset ALS and by February 2017 her decline had outpaced our ability to care for her at home.
Learning of Sitrin NeuroCare was a godsend.
The emotional difficulty of leaving our home was softened only by a thought we both knew was true, that this had to happen.
She had to leave home and go to a place where she could best be cared for.
 Alicia at Sitrin |
As for Sitrin, I cannot say enough about the wonderful and loving care they gave my wife. They were not only her caregivers, professional in every way, but they also became her friends and in many ways were like family to us. Having retired a couple years early, I was able to spend as many days as possible, sometimes 4 to 5 days a week, with Alicia throughout her illness. Her sisters and family came to be with her on Fridays and weekends which allowed me to return home and tend to our house and business matters. It was a team effort by so many, seeing to Alicia's care and comfort and trying to give her some quality of life during her time of greatest need. Family, extended family, neighbors, friends, her co-workers, her orchestra buddies, and so many others from near and far, came to comfort and console. My feelings of gratitude for all that was done by so many to help are sometimes overwhelming.
I find it amazing that there are people like the staff at Sitrin NeuroCare, who choose to do this as their career, to make it their life's work to care for those who can no longer care for themselves. Day in and day out, their efforts are nothing less than heroic. May God bless them each and every day.
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Alicia Ruth (Kelly) Kuehn was born in Syracuse, New York, April 9, 1964, a daughter of Francis James Kelly and the late Shirley Richards Kelly and grew up in Baldwinsville, New York, graduating from Baldwinsville, Baker High School in 1982. She continued her studies at Binghamton University, graduating in 1990 with a bachelor's degree in computer science. Over the course of her professional career, Alicia worked as a software developer for Lockheed Martin in Valley Forge, Pennsylvania, Decision Associates in Collegeville, Pennsylvania, and for the past 17 years as a programmer/analyst with The Raymond Corporation in Greene, New York.
In 1992, Alicia married Karl James Kuehn, originally from Schuylkill Haven, Pennsylvania, whom she met as a coworker at Lockheed Martin. They were happily married for 25 years.
Alicia's empathy and concern for others was always evident throughout her life. She remained very close to her family and was devoted to her parents, sisters and brother, aunts, uncles and cousins as well as many nieces and nephews. She cherished summer family reunions and holiday gatherings throughout the year. She also took time to help family, neighbors and friends that were experiencing difficulties and contributed time and resources to many charities, local and international.
 Playing Cello with BCO |
Alicia was very musically talented and played the cello since the age of eight. While living in Limerick, Pennsylvania, she was a member of the Pottstown Symphony Orchestra for ten years. After moving to Greene, NY with her husband in June 1999, she joined the Binghamton Community Orchestra and was a member of their cello section for 17 seasons. Alicia was also an extraordinary pianist and was the accompanist for a master work performance for her High School chorus, as well as accompanist for the Harpur College chorus while she was attending Binghamton University.
Another great passion of Alicia's, which developed after moving to the couple's rural home in Greene, was gardening, where she enjoyed planting and harvesting a variety and abundance of organically grown vegetables, fruit, flowers and herbs. Her garden was her therapy, where the cares of the workaday world fell away, and she would often be outside planting, weeding and cultivating until nightfall. Alicia loved sharing her gardening stories and produce with family and friends, who appreciated or shared her love of naturally grown food and the way it brought her closer to nature. Another aspect of nature that Alicia enjoyed was hiking through the woods on her and Karl's property and on mountain trails during the couple's many vacations to Lake Placid, New York. Additionally, she was always fond of cats, especially strays, and had pet cats throughout her life.
In June 2016 Alicia developed symptoms that were later diagnosed as amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease. In February 2017, she was admitted to the Sitrin NeuroCare Center in New Hartford, New York. Her symptoms progressed until her passing on March 19, 2018 at age 53 from complications stemming from ALS.
Shortly after arriving at the Sitrin NeuroCare Center, Alicia worked with her sister Rachel to write down some thoughts that would help people when they came to visit. Alicia's parents had these thoughtful words framed and placed in her room. In addition to her words of guidance, Alicia had a wonderful sense of humor and even in the face of her terminal illness she was able to come up with a few words of wisdom, some of which she referred to as her "Snarky Zen."
 Alicia's Guide for Visitors |
"Nobody gets out of this life alive."
"I'm not so helpless. In a way, I control the world with the power of my mind." (and this was true. After Alicia lost her ability to speak, she merely had to look in a direction, at an object, at a drawer, or just make an expression to have the people around her take action. We all learned the nuances of a hundred or more little glances, blinks and expressions that she used to communicate her needs.)
"I'm perfectly healthy other than that ALS thing."
"Mom was worrying about Trump and I said, I'm outta here and you're all screwed."
"If I act all bent out of shape, chances are I am literally all bent out of shape."
"I've always been kinda lazy. Now, thanks to ALS, I literally never have to lift a finger again"
"My course is set and that is surprisingly relaxing."
"Almost all my unhappiness in life was due to my own unrealistic expectations."
"Burps are to be celebrated, not excused."
"Friends don't let friends drink and drip."
"I'll do the talking."
Photos from vacations, family gatherings and just out and about.
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