Kevin was 12 when I knew for sure there was something wrong with my husband, Dick, and 13 when Dick was diagnosed with frontotemporal dementia. Even before the day I knew, Kevin knew and had been trying to tell me there was something wrong with his dad. Kevin and Dick were so close, probably closer than most kids are to their dads.
Dick was 46 when we married and 50 when Kevin was born. We both adored this child, and he was the center of our world. Dick was thrilled to have a little buddy. At his age, he had given up on ever marrying or having children, and then here we were in his life. He had the normal new father jitters, wondering how a child was going to change his golfing habits and how it was going to change his relationship with me. But those jitters were quickly set aside as he enjoyed this little boy completely.
Dick hadn't really worked since we married. I always puzzled over this and now I wonder if it was the early signs of the FTD at work. Fortunately, I had a great job and made lots of money so we didn't really need the money. After Kevin arrived, Dick's indifference to finding a job proved a blessing because he spent so much time with Kevin. Although I hired a full-time housekeeper/nanny to be with Kevin during the day while I was at work, Dick was around all the time too. After Kevin started school and we moved to another state, Dick was in charge of Kevin full-time. He was the one who insisted on Kevin's attending the private school, who took Kevin to school and picked him up, who established the relationships with Kevin's teachers, who took him to all his sports events, and who took him golfing with him starting at about age 2. He loved that boy and they were together all the time.
It had started to change, though, in the past couple years before diagnosis (my life is split now into pre-diagnosis and post-). Dick had acquired some odd habits and one of them was that he constantly nagged Kevin. I figured it was because Kevin was approaching teenage years and he was just being as annoying as I was at that age. Dick and Kevin were together in the afternoons before I came home from work. I owned my own business and sometimes worked long hours. Looking back, I think I was spending more time at work to avoid Dick, too, as he got stranger during those last couple years. Anyway, it meant that things were happening that Kevin noticed long before I did.
Three months before diagnosis, I moved Kevin and me to an apartment and hid from Dick. I'll write another blog one day about the day we moved out, as that's a good story itself. I had worried about the effect on Kevin of our moving out of our big 4500 square foot house in the woods into a little two-bedroom apartment, leaving behind all of our things and our dogs, not to mention his adored father. But Kevin was thrilled about the move. That night, he had jumped on the new rented sofa with joy and he had slept as though he had not slept for months before that. He was a new kid and much happier than he had been at home. That's when I'd known I was doing the right thing. For six weeks after we moved out, Dick never once asked about Kevin although I talked to Dick nearly every day. One weekend, Kevin asked to go spend a weekend at home (I still thought we were dealing with a marital problem so I had told him he could see his Dad whenever he wanted). I arranged it with Dick and dropped Kevin back at home with his suitcase. He called me three hours later and begged me to pick him up, which I immediately did. Dick didn't seem to care. Very weird.
Meanwhile, about a month before diagnosis, Kevin was diagnosed with a heart condition that was going to require a procedure to be done in a children's hospital, with an overnight stay. I told Dick, assuming he would be as devastated as I was, but of course he wasn't. The procedure -- a radiofrequency catheter ablation -- is completely successful 98% of the time. The week after Dr. Weiner first whispered the words "frontotemporal dementia" and the week before the final diagnosis, Kevin had the procedure. Dick showed up at the hospital 5 minutes before Kevin had to go into the operating room but then he disappeared again. I sat at the hospital for the entire 6 hours Kevin was in the cath lab, with my parents and some friends, waiting for the word that it was done and he was now okay. Instead, when he came out, they told me he was in the 2% for which it hadn't worked. I have never felt so alone, not having my husband there to hear that news with me. Where was that shoulder I needed to cry on right then? He never even called to find out if Kevin survived the procedure. That night, Kevin had a rough night and I slept right next to him in the hospital room.
So, with that behind us, Kevin recovering from his unsuccessful operation and me still in a dizzying whirlwind of emotion, I took Dick back to see Dr. Weiner. Dr. Weiner showed me the scans of Dick's brain and said he definitely had FTD. "No cure, no treatment." I asked whether I should move back in with Dick. No, he said, absolutely not. It wouldn't be safe for Kevin and we would probably call Child Protective Services if you do. My world completely crashed at that point.
That evening, I sat down with Kevin and told him the new words -- frontotemporal dementia. I told him his Dad wasn't going to get better. Kevin's first reaction mirrored mine: relief. We weren't crazy. There really was something wrong with him. And then: horror. But then Kevin immediately jumped to one that is his alone, really. He asked me, "Is it genetic?" How did he even know that word? And I had to tell him they don't really know, but I told a white lie, "We don't think so, in your Dad's case."
For three hours, Kevin lay on his bed and sobbed that night.
It was December 23, 2003, and the next day would be Christmas Eve and we somehow got through it. I also used Christmas Eve to arrange a vacation for Kevin and me. I was so exhausted that I didn't know how I would manage to even prepare meals for us. I took us on a cruise in the Caribbean --it was perfect. Kevin and I slept a lot. I let him order room service as much as he wanted, and he took complete advantage of that. I spent hours on deck just looking at the ocean and more hours in the library putting together a jigsaw puzzle with complete strangers. We read a book together to each other in the evenings about a man who had a traumatic brain injury that destroyed his frontal lobe. And we cried. A lot. For a whole week. And then I felt ready to go on.
