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.
Monday, March 23, 2009
Thursday, March 12, 2009
December 2003 -- A Name for What's Wrong
It is another one of those days burned into my memory. December 6, 2003. A week or so before that, I had tearfully begged the woman at the Memory Disorders Clinic at UT Southwestern to please get us an appointment with the director of the clinic as soon as possible because something was really, really wrong with my husband. She had found a time slot for us, months earlier than she normally would have gotten us in to see the doctor. That was good, because I didn't think I could stand going through Christmas without learning something new. I was completely stressed out. Our son Kevin, who was then 13, was scheduled for a heart operation at the children's hospital on December 16 and that alone was almost more than a parent should have to deal with. My husband's strange behaviors were pushing me past my limits.
When it was our turn at the clinic, a nurse took Dick one direction to take his weight and other normal vital signs, while Dr. Weiner whisked me into his office and asked a few simple questions. When Dick arrived, Dr. Weiner sat facing Dick in a chair and placed me behind Dick where Dick couldn't watch me but Dr. Weiner could see my facial reactions. He asked Dick a series of questions. Of course, Dick's memory was just fine and he knew what time it was, what year, where he was, the normal questions that test your memory. Then Dr. Weiner told Dick he was going to give him 60 seconds to name all the animals he could think of. Dick said, "Dogs.....cats...... dogs, did I say dogs already? Oh, yeah, cats..... and birds! Dogs. And cats..." He spent the entire 60 seconds that way, coming up with nothing else. Of course, in my own head, I was going through the entire zoo, then a farm, then all the different kinds of dogs and birds I could think of. Next, Dr. Weiner asked Dick to name all the words he could think of that started with a letter. Again, Dick could come up with only 3. I was startled. My husband had a master's degree and was well-spoken. Why couldn't he think of all those words?
Then the part that I will never forget. Dr. Weiner asked, "What does it mean when I say don't cry over spilled milk?" Dick just looked puzzled and said he didn't know. Dr. Weiner asked if he'd ever heard that expression before, and Dick just shook his head no. Dr. Weiner prompted him, asking what he thought it might mean. Dick said he had no idea but asked, "If I spill my milk, I shouldn't cry?" Dr. Weiner gave a friendly smile and said, "How about more generally? What do you think it might mean?" Dick said, "If someone else spills their milk, I shouldn't cry?" Behind him, my head was spinning with the realization that was sinking in. Dr. Weiner said, "Okay, let's try another one. What does it mean when I say people who live in glass houses shouldn't throw stones?" Dick looked at him like he was stupid and matter-of-factly said, "I don't live in a glass house." Bells went off in my head. No wonder he and I didn't seem to be able to talk to each other any more -- he didn't understand normal speech any more. Dr. Weiner looked at me and said, "Your husband doesn't understand abstract concepts at all. Is this a change?" Absolutely.
There were other things during the two hours we were there, things that I heard Dick tell the doctor that I had gotten used to hearing from him. I had known they were strange but I wouldn't have remembered to write them all down before coming. The doctor asked Dick, for example, if he wanted me and Kevin to live with him again, and Dick said, "No, she's too fat now." The doctor then asked him what he would do if he didn't live with me, where he would live, and how he would pay his bills. He said he'd get an apartment and he'd be able to pay his bills by going to the ATM just like he always did (somehow, it never occurred to him that I had to work to earn the money that went into the ATM!).
At the end of the exam, Dr. Weiner told us that there was definitely something not right and he did not suspect Alzheimer's but he needed to get a scan of Dick's brain to look for what parts were not working properly. He wanted to schedule him for a SPECT scan, a single photon emission CT scan, which was considered experimental at that time. He said we could do it at no charge as part of their research program, and he scheduled it for December 12, the following week. We also scheduled a visit back with Dr. Weiner on December 23 to learn the results of the scan.
Dick and I sat again in the waiting room for a few minutes while the appointments were being scheduled. Then Dick left to go to the restroom. Dr. Weiner passed through the waiting room just then and put his hand on my shoulder. He whispered, "I know this is terrible for you and your son. I think he has frontotemporal dementia." Just then Dick came back and Dr. Weiner left.
Frontotemporal dementia??? What the heck is that???? Thoughts were piling up in my head. I wanted to ask a million questions, but I knew I had to remain calm or Dick would get upset, and he was dangerous when he was upset. So I put on a smile, acted like the world hadn't just shifted, and took him out to eat on our way home.
When it was our turn at the clinic, a nurse took Dick one direction to take his weight and other normal vital signs, while Dr. Weiner whisked me into his office and asked a few simple questions. When Dick arrived, Dr. Weiner sat facing Dick in a chair and placed me behind Dick where Dick couldn't watch me but Dr. Weiner could see my facial reactions. He asked Dick a series of questions. Of course, Dick's memory was just fine and he knew what time it was, what year, where he was, the normal questions that test your memory. Then Dr. Weiner told Dick he was going to give him 60 seconds to name all the animals he could think of. Dick said, "Dogs.....cats...... dogs, did I say dogs already? Oh, yeah, cats..... and birds! Dogs. And cats..." He spent the entire 60 seconds that way, coming up with nothing else. Of course, in my own head, I was going through the entire zoo, then a farm, then all the different kinds of dogs and birds I could think of. Next, Dr. Weiner asked Dick to name all the words he could think of that started with a letter. Again, Dick could come up with only 3. I was startled. My husband had a master's degree and was well-spoken. Why couldn't he think of all those words?
Then the part that I will never forget. Dr. Weiner asked, "What does it mean when I say don't cry over spilled milk?" Dick just looked puzzled and said he didn't know. Dr. Weiner asked if he'd ever heard that expression before, and Dick just shook his head no. Dr. Weiner prompted him, asking what he thought it might mean. Dick said he had no idea but asked, "If I spill my milk, I shouldn't cry?" Dr. Weiner gave a friendly smile and said, "How about more generally? What do you think it might mean?" Dick said, "If someone else spills their milk, I shouldn't cry?" Behind him, my head was spinning with the realization that was sinking in. Dr. Weiner said, "Okay, let's try another one. What does it mean when I say people who live in glass houses shouldn't throw stones?" Dick looked at him like he was stupid and matter-of-factly said, "I don't live in a glass house." Bells went off in my head. No wonder he and I didn't seem to be able to talk to each other any more -- he didn't understand normal speech any more. Dr. Weiner looked at me and said, "Your husband doesn't understand abstract concepts at all. Is this a change?" Absolutely.
There were other things during the two hours we were there, things that I heard Dick tell the doctor that I had gotten used to hearing from him. I had known they were strange but I wouldn't have remembered to write them all down before coming. The doctor asked Dick, for example, if he wanted me and Kevin to live with him again, and Dick said, "No, she's too fat now." The doctor then asked him what he would do if he didn't live with me, where he would live, and how he would pay his bills. He said he'd get an apartment and he'd be able to pay his bills by going to the ATM just like he always did (somehow, it never occurred to him that I had to work to earn the money that went into the ATM!).
At the end of the exam, Dr. Weiner told us that there was definitely something not right and he did not suspect Alzheimer's but he needed to get a scan of Dick's brain to look for what parts were not working properly. He wanted to schedule him for a SPECT scan, a single photon emission CT scan, which was considered experimental at that time. He said we could do it at no charge as part of their research program, and he scheduled it for December 12, the following week. We also scheduled a visit back with Dr. Weiner on December 23 to learn the results of the scan.
Dick and I sat again in the waiting room for a few minutes while the appointments were being scheduled. Then Dick left to go to the restroom. Dr. Weiner passed through the waiting room just then and put his hand on my shoulder. He whispered, "I know this is terrible for you and your son. I think he has frontotemporal dementia." Just then Dick came back and Dr. Weiner left.
Frontotemporal dementia??? What the heck is that???? Thoughts were piling up in my head. I wanted to ask a million questions, but I knew I had to remain calm or Dick would get upset, and he was dangerous when he was upset. So I put on a smile, acted like the world hadn't just shifted, and took him out to eat on our way home.
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