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Loving Through Lewy

By Jane Matfin

John and I met on a blind date on November 4, 1995. I had been married before and John had broken from a long term relationship; we clicked right away. Our relationship moved quickly. We were married our son Alex was born in May 1997. John was a wonderful father to Alex and a fantastic stepfather to my two girls. He always worked to provide the best living he could for us and was always so thoughtful to everybody.

From the time we met, John always had a slight tremor in his hands. He had it for years and always thought it was just nerves. In 2007, I noticed the shaking getting worse, but John once again brushed it off. John and I danced and partied our way through the Christmas season, but in January 2008, John seemed to slow down and complain about stiffness in his arms and legs. He finally went to see his doctor where it was explained to John that he thought he had the onset of Parkinson's. He was 43 years old. As time went on, his health declined and could hardly walk. After a visit to the neurologist, John was hospitalized where he stayed for eight weeks. When the first signs of confusion started, it was heartbreaking.

John started coming home for weekends, but it was difficult as he could not recognize this was his home. After six months, my beloved John was diagnosed with Lewy body dementia. We had never heard of it, and our lives would never be the same. We had to make home modifications and deal with the fact that John did not sleep well and that his short term memory was quite poor. Like many others who are living with LBD, he has difficulty understanding long sentences, gets unsettled in new situations and is on many medications.

John is the love of my life and has brought me so much happiness. We renewed our vows on Valentine’s Day 2014. I have vowed to keep John at home with his family (we have a team of three caregivers to help). I have to be strong for John, because no matter how hard and frightening this is for me, I think about how it must be for John when Lewy appears and he doesn't know anybody — and how terrifying that must be.

If you would like to share on your experience with Lewy body dementia, please contact Diedrea White at dwhite@lbda.org.