About a month ago Hospice called to tell me that Brian seemed... not good. And maybe I should come up that afternoon to visit with him. She said, "Maybe he is just not feeling well, but he hasn't eaten or gotten out of bed for 24 hours." I thought this was it. My hands were so shaky I had trouble texting his sister and my family. I rearranged our plans for that day and headed up around dinnertime. It was just me, not the kids. I was expecting a drained, silent, perhaps dying Brian... instead I was welcomed with a sincere smile and "Hello."  We proceeded to have a really nice night together. I got him to eat a few crackers, drink a ton of water and then we watched a movie together. It is not uncommon for people with FTD to be extremely comforted by music and movies that are from before they got sick, therefore he ALWAYS asks me to put in the movie, Ocean's 11. I was teasing him that night, asking "Would you like Spiderman? Or Harry Potter?" and he would respond "Oceans 11!" What about this movie or that movie... "Oceans 11!"  I turned all the lights off and he giggled and said many of the lines and sang with the background music. After the movie I was hanging up pictures that needed new masking tape, one was a beautiful picture of the two of us laughing at the reception of our wedding. He looked right at it and said, "That is us at our wedding." I was blown away. Brian rarely speaks and when he does it is often illogical. Anyway that led to me apologizing for the times I was crabby or mean to him and him saying, "I love you too Jen," and putting his arms up pulling me in to a hug. Normally Brian has to be prompted to give hugs or smile or even say words. It was like the whole night was a piece of heaven dropped down just for us. And what a whirlwind of emotions--I was driving up to the nursing home preparing myself for the worst and then we had the best night we have had since he arrived at the nursing home a year ago.

Brian was so sick that week because his disease has progressed. He is having some pretty serious digestive issues. He also puts EVERYTHING in his mouth not knowing what is food and what is not. He is 100% incontinent which makes visiting a little bit "gross" sometimes but the nursing home is good about cleaning him up when needed. He is walking much less than he was a few months ago, but he is still able to walk. And, because of all this and other details, he has lost a fairly significant amount of weight. The kids and I visited the other day and he was in a good place. He ate his whole meal and gave the kids a few smiles and even asked Eleanor a question! I really, really hate this whole journey. It is an exhausting rollercoaster and I often feel helpless and overwhelmed. However, Brian deserves my consistent care. He would do the same if it were me melting away in that bed. 

I'm pretty sure the kids, particularly Colin, have picked up on the fact that Daddy is a little bit worse than he was. Colin had a hard time leaving the nursing home the other day, "We shouldn't just leave him here!"  Please pray for them as they navigate the rough waters of grief.

Also--I feel like I need to mention that giving money to this caring bridge website is kind and good, but please know it does not go to me or the kids. Giving a financial tribute to caring bridge in Brian's honor goes to the caring bridge organization, to help them keep there good work running. I think a few people gave donations thinking that it was for the children and I, so I felt like I needed to clear that up. It's still a good cause, but someone asked me the other day if I received their financial donation, so just so everyone knows it's not a donation to us.