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CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD

Neuropathy | Last Active: Apr 12, 2022 | Replies (23)
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@barbbie

Thank you so much for your kindness and sharing about your journey. It is truly the most difficult time in life in some ways and in other
ways there is also hope for the future. My husband's last four years were tough on him, especially with the dementia and the fear, the unknown, the not understanding where he was, who I was. He was in a home hospice program and I was the main care giver. I had prayed probably four days before he died that God would have mercy on both of us and bring him home. It was so painful to watch and painful for him to go through. Being Christians we know heaven is our home and I felt joy for him and sadness for me.

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Replies to "Thank you so much for your kindness and sharing about your journey. It is truly the..."
Jane | @darlingtondoll | Feb 6, 2020

Oh my goodness. Your journey is similar to mine. My husband had dementia for 13 years and also got a rare form of leukemia six years before he died. We also had home hospice. Sometimes he was Dr. Jeckyl and other time he was Mr. Hyde. I never knew what mood he would be in from time to time. But I loved him so deeply that it was a pleasure to care for him. He didn’t like to have anyone else in the house and wanted me by his side all the time. We were joined at the hip. Even with the dementia, he would tell me he loved me several times every day. It was an honor to care for him. He was a great man and we had a very happy marriage for almost 40 years. He was from Paris and we went there frequently. When he was close to the end, I asked him if I could leave some of his ashes in Paris. After talking about where I should do this, we decided that the kids and I would drop them off the Eiffel Tower. Most of his ashes were buried in a military cemetery, but I saved several small bunches and the kids and I dropped them off the Eiffel Tower on Christmas Eve.
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