Mister Rogers said, ‘Look for the helpers.’ My son, Jeff, was a helper.
His time at an assisted living center were some of the happiest years of his life
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My son, Jeff, was diagnosed with Lennox-Gastaut syndrome, a rare form of epilepsy, when he was about 9. After he grew up, he lived at home with my husband and me for a few years because we discovered it wasn’t safe for him to live by himself with his worsening seizures.
Still, finding the right living space for a grown child with epilepsy can be challenging.
My husband and I worked, and we worried about leaving him alone at home, too. One day, I arrived home to find Jeff had fallen and hit his head. At that point, I realized we needed to make a change but had no idea where to begin. Jeff’s case worker at the time suggested he try living in a personal care home. He would be among others and safe, with nurses and aides around all the time. I spoke to Jeff, and we decided to try that arrangement.
Jeff had some independence at the facility, but it wasn’t close to where we lived. My sister knew of an assisted living facility that was closer, and we moved Jeff to The Village at Greenbriar in June 2009. He was 37.
‘The Main Man’
This facility was for elderly people, but the owners took Jeff in with open arms, and he began building relationships with the other residents a few months after he started living there. He soon became friends with a 90-year-old woman whose husband had passed away. She was depressed and stayed in her room.
Jeff started talking to her at dinner. At bingo and crafts, he would sit with her. He watched game shows with her and helped her with her bingo cards, since her sight wasn’t good.
One day, when I was visiting Jeff, she said to me, “My husband passed away, and I was so lonely here, and then Jeff moved in and became my good friend. My husband would never want me with another man, so he sent Jeff to help me! He’s my angel!”
I was so stunned and emotional. Jeff had a purpose! He couldn’t go to work anymore because his seizures were increasing, so this was his new purpose on Earth. Jeff helped her until her final days. I was so proud of him.
And she wasn’t the only one Jeff helped. He also alerted the staff if someone fell or guided visitors through the facility to see people. He really felt he had a job there, and the staff called him “The Main Man.” His other nickname became “The Movie Guy” because he would help the staff set up for movie nights and bring residents to the room. He loved living there, and they were some of the happiest years of his life.
He made me so very proud, and we all miss Jeff very much.
Note: Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lennox-Gastaut Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.
