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.
