Yesterday we had our usual Family Easter celebration except this one was different. It was my husband and I, my dad, Nicole, Eric and the 5 grandchildren and Jonny. It was our first family gathering since Christmas and since Claude had gotten so much worse. Everyone can now see the difference in him, even the older grandkids. Yesterday just didn't seem the same. I can't explain except for me "this dark disease" is always with us. I miss the sparkle in my husbands eyes, his charming smile and funny personality. My son who lives in Southern California had been staying with us for 4 days and was getting a first hand look at how bad things have gotten. My son had been doing a lot of research since my husbands diagnosis of FTD and had gathered information and several videos for us to watch. I think that all day instead of enjoying the day all I could think about was what we had planned for that evening. After everyone left, Nicole, Jonny and I decided to sit down with their father to explain the diagnosis to him. We wanted to see just how much he understood. Nicole started and very gently began by asking him if he knew he was sick and what he had. He always looks at me with this look of "help me" when ever he is questioned by family or doctors. It broke my heart to sit and watch and listen to my children explain to their dad how much we all loved him, what was happening and what to expect. As you can imagine, there were a lot of tears. Then we all watched the documentary my son found "What is Frontoltemporal Degeneration" (https://youtu.be/Ue3y60AsMCE) together as a family. I don't know how much Claude understood as he didn't have any comments or questions for us when it was done. We hugged him and told him how much we loved him and that we would handle all of this together as a family as we always had.
I have the most amazing children and I know how blessed I am. Claude was an amazing and loving father and husband. He coached their sports, attended their dance recitals, Scouts, and did everything a great dad does. Our kids have told us so many times that they had such an amazing childhood and were so grateful to both of us. Family always came first for us. I think that is why I feel so angry and robbed. To have had such an amazing life and for it to all end up like this with all our hopes and dreams lost. My wonderful husband and best friend is gone and now I live with a stranger. I love the occasional glimpses of the old him, but those are appearing less and less.
I wasn't sure if we were doing the right thing yesterday... but I feel some peace that maybe he at least understood how much he is loved. This is such a hard journey and as hard as it is, and will get, and as many times as I will think that I can not go on, I will rely on my amazing kids and friends to help me through. And when that isn't enough I know that my Savior is with me and sometimes I can even feel his arms around me. I just pray that my husband doesn't suffer too much or isn't afraid as I don't think I could handle that. I love him with all of my heart. . . . .
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