A Daughter's Story

Kim Schaeffer recalls what it was like to watch her father in a life and death struggle with a devastating illness that came out of the blue.

September 2012

My father Tom was always a man who was capable of doing anything. Growing up, I watched him cook, clean, do laundry, and keep an immaculate yard. He took pride in his work. There weren’t "mom" jobs and "dad" jobs, just a willingness to do what needed to be done. He was strong. I watched him struggle through the years with numerous health problems, always coming back tough as nails and eager to get on with his normal life.

On a morning shortly after Christmas, 2011, I received a call that my father was in the ER with what appeared to be a stroke. When I arrived, dad was clearly uncomfortable, but still his joking self. He always had what I’d call a slightly inappropriate sense of humor, but it was one that I shared and one I welcomed to lighten the mood in this scary situation. My mom, Joanne, and I stayed the day with him, gabbing and wasting time while the doctors ran numerous tests to try to reach a diagnosis. By the end of the day, no closer to answers, my mom and I kissed him goodbye and told him we would return in the morning. By the next day, our uneasiness had turned into downright fear, as dad was put on a respirator and started to lose all ability to move. How could someone who just two days earlier was leading a perfectly active life now be lying in a hospital bed totally paralyzed? It was heartbreaking to stare into his eyes, the only part of his body that could still move and imagine the unbelievable hell that he was enduring.

At least a week went by before the doctors were able to tell us that he was most likely suffering from an extreme case of GBS (Guillian-Barre Syndrome). The condition had destroyed the myelin or protective coating surrounding his nerves, causing the paralysis and the inability to breathe on his own, it was also shutting down his kidneys. The condition was extremely painful, and even a loving touch on his hand, was causing him unbearable pain.

After spending four long weeks in the neuro intensive care unit, unable to communicate because of his breathing tube, he was given a tracheotomy. Though he remained on the respirator, at least he had some relief from getting the tube pulled from his mouth and throat. Harder than watching him lay in that bed for all those weeks, were the words he began mouthing to my mother and I. "I wish I would have died" and "Why me?" were things that we had no response to.

As he slowly regained some feeling in his fingertips and toes, the staff at the hospital informed us that it was time for my dad to make a move and start rehab. As happy as we were to hear those words it was also a time filled with great anxiety. How could a man who has not left bed in a month, and can barely feel his fingertips and toes, go to rehab?

My father was transferred to Good Shepherd Specialty Hospital in Bethlehem. Not only broken physically, but mentally, my dad and the staff at the rehab had a real fight ahead of them. The physical and occupational therapists would come every day to his bedside, where they started getting his limbs bending, while the respiratory therapist worked on weaning him of the respirator. Always offering words of encouragement, the staff never gave up working him through his darkest days (and there were many). Five minutes off the respirator soon became fifteen and so on. We enjoyed sharing in even the smallest of accomplishments.

It had been years since I lived at home and I took joy in the small things I could do for him….fluff a pillow, change the channel on the TV, cut his nails. The nurses had started getting him out of his bed, and with more and more hours off the respirator, it was only a matter of time until he was able to be transferred to Good Shepherd Rehabilitation Hospital in Allentown. He had a voice now, which let the staff in on his true personality. My mom and I were telling everyone that dad was a fireball all along, and now they knew it for themselves. Leaving there was bittersweet. My dad formed bonds with them that will never be broken.

The transfer to Allentown brought back the same anxiety I had felt previously. The fear of the unknown, new faces, new routine. The first couple days were hard. Dad was in a lot of pain and my first instinct was to want them to go easy on him. Watching him try to do things on his own and struggling to the point of tears was especially difficult. There were trips back and forth to the acute care hospital for complications for one thing or another, and for every two steps forward there was always one step back. But my dad had a rhythm now and a purpose, just as he had in his previous life. I was able to start bringing his granddaughter (my daughter), Lola, in to see him and we started to see more and more laughter…… and hope.

The people at Good Shepherd gave my dad his old life back, he’s not quite at 100 %, but he will be. I would like to thank the doctors, nurses, therapists, techs, food service workers, and ladies who tidied up my dad’s room. I witnessed all of you offering my dad such wonderful words of encouragement and kindness.

Last week my dad mowed his own lawn. People do it every day. Some people complain about it. My dad couldn’t be happier. And neither could I. Thank you Good Shepherd.

Kim Schaeffer lives in Allentown.

(Pictured from left) Joanne Horwath, granddaughter Lola Schaeffer, Tom Horwath, Kim Schaeffer.