For the last few days I've been walking around in crisis mode. I consider myself a fairly strong person and even I am feeling the immense weight of this journey. Our beautiful family started almost 14 years ago. Brian was the most generous, kind, stable, loving man I knew. He was fun to be with and loved being outdoors. We fell in love, married, had a few adventures and then began our family. A few years ago everything began to fall apart. Eleanor was diagnosed with a beastly chronic illness and was in and out of the hospital, Brian lost a great job he had for years, and our marriage was really struggling. Brian deteriorated fast and was totally unwilling to go with me to see a doctor. Fairly soon after that he stopped leaving the house, stopped seeing friends and family... I felt like I was losing him, and I was. We were divorced a few months later and he had to be escorted away from our condo so I could sell it (he was never angry, never violent, always just very confused and refused to see that anything was wrong). Eleanor was incredibly sick through all of this. We moved in with my cousins for a few months and she was hospitalized every few weeks. I knew something was wrong with Brian psychologically, but I still felt rejected, brokenhearted, scared and alone. He went and lived at his Mom's house for about 6 months and continued to deteriorate (and continued to refuse to see a doctor or go to a hospital). His sister and I forced him to an ER about 15 months ago and they stated that he was indeed psychotic and likely schizophrenic. We asked about a brain scan and they said it was not necessary. Brian has spent the last 15 months living in a nursing home for people with severe mental illness. I visited once or twice a month. Eventually I would cut his nails and change his clothes. He was so, so sick. I hung pictures of the kids on the cold, institutional walls. I brought him a weighted blanket thinking maybe that would help calm him. I brought a small musical Christmas tree. I brought all his favorite treats and chips and soda. And I begged his family to help me get him on social security incase we could get him better psychiatric care. And then things got worse. A few weeks ago I noticed that his weight was declining at a much faster rate than ever before. He also had bruises from falling and being hit by other residents. Then two weeks ago he had a scary choking incident and the paramedics had to be called. Once again his sister and I said, "Enough is enough! Something else is wrong." We demanded they bring him to a hospital so that we could get a full medical workup. The news was terrible. His brain was severely deteriorated. He had been misdiagnosed. He has a terrible brain degeneration disease called Frontaltemporal Degeneration. It likely started 7 or 8 years ago and there is no cure. The fact that he refused to get help is a typical response for those with this disease, according to the neurologist. Worst of all, he will die within the next few months, maybe a year, probably not much longer. He is in the end stages and was put on Hospice.
As you might imagine my heart is broken into 10,000 pieces all over again. Each day has been a rollercoaster of emotions. I feel guilty that I didn't spend more time with him. I feel terrible that he was living in a run-down psychiatric home for more than a year. I am incredibly sad for my children, who are crushed and confused. And I am unbelievably sad that the love of my life is dying.
And still there are moments of gladness. I am glad that the good memories feel 100% good again. I'm glad to know that he truly never rejected me or the kids, he was just THAT sick. I am so glad that we can be with him in these last few months until he is at peace. I am glad that I never told the kids how mad I was at times. I consistently told them that Daddy's brain was sick and that he really did love them very much, he was just too sick to show it. I am glad that he can die with dignity and that I can hold and protect him as he goes.
One day at a time, sometimes one hour, sometimes one breath... we will get through this because of all of you and because of the strong memories of a husband and daddy who passionately loved us while he could. I will be posting here as our journey continues. Thanks for caring about Brian!
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.