An update on Suzette Haden Elgin from her husband

Her husband George asked me to pass this along:

Hello to you all. At last I have something to report about Suzette's condition.

On the ninth of January Suzette submitted to a battery of tests at the Schmeiding Center for Seniors in Springdale, designed to determine whether she had developed Alzheimer's disease or some form of dementia. They wouldn't give us any information at the conclusion of the tests, but insisted that her doctor would discuss the results at her next appointment with him. We drove up to Huntsville ( a 60 mile round trip) for her visit on the 17th of January only to find that the Schmeiding Center had sent the results to the Fayetteville office (only 10 minutes from our apartment). 

We then made an appointment with her Doctor for the following week and found that the Neuropsychologist at the Schmeiding Center had told Suzette's doctor the they could not offer a firm diagnosis without seeing a PET scan first, and that they had made an appointment for Suzette to have one at a facility in Tulsa that they approved of! I told them that Suzette could not possibly go to Tulsa because of he Diverticulitus, and I went ahead and scheduled one at the local Highland Oncology Clinic, which turned out to be perfectly acceptable. Then we had to make another appointment with her doctor to have him tell us the final diagnosis.

It seems that there is a quite diminished hypermetabolic activity within the bilateral frontal and temporal lobes which is nearly symmetric. There is also symmetric activity within the bilateral parietal and occipital lobes

What all of this gobbledegook boils down to, is that Suzette has developed a Fronto -Temperol Dementia. A condition that develops more rapidly than Alzheimer's disease, and does not respond to any form of treatment or medication. Somedays, for hours at a time, her behavior is almost normal. Most of the time she has no problem with filling up her day. She reads all kinds of books, and sometimes reads them over and over again. We are fortunate in living near a used book store, that has a vast assortment of titles that I can buy for 26 cents apiece. I've been buying 30 to 40 every 2 or 3 weeks. She reads them all! Then I pass them on to anyone who wants them.

When we first moved here, 15 months ago, I bought her a new Macintosh iMac computer. She started off using it daily, and said she was writing a new science fiction story. After a few months she stopped working on the story, and then stopped using the computer altogether. Now She won't use it even to read or answer her email.

For Christmas She wanted a laptop computer and a cellphone. She hasn't even started up the laptop, and she can't remember from day to day, how to use the cell phone. It's a very simple one, ideal for Seniors, called the Jitterbug. She won't answer the "hardwired" phone when it rings, and won't communicate in any way with anyone except immediate family, and a very limited way at that.

No radio. No TV. No form of entertainment except her books.

I'm giving her the best care that I can. I go out every morning for an hour or so. I have a cup of coffee, go to the grocery or bank, or gas up the car. Just the essentials. She sits in her Grandmother Bertha's rocking chair and reads, or more recently, sleeps. She seems OK with that.

She keeps moving her bedtime forward. She wants to eat our evening meal at 5pm, and then She goes upstairs and goes to bed. I have tried to encourage her to stay up later, but it just doesn't happen. Then, She's awake around 3am, and I have to keep sending her back to bed until at least 5 or 5:30 am.

She hasn't left the house for anything except visits to the doctor's office for about 15 months, and I just recently asked her if she wanted me to look for a small, used RV, (that has, of course, a bathroom), so that we could go for daytime drives or even short overnighters. She thought about it for a few days, and much to my suprise, said,"Yes,I'd like that very much". I waited a few days and asked again, and then again, and each time I got the same answer. So I did it!

Maybe it will be therapeutic to get her out of the house for short periods of time. It surely can't hurt. We could even go to someone's house and ask someone to come out to the RV and visit for a few minutes….. Maybe? We'll see.

I've rambled on for long enough. I've just tried to answer a few questions that I've been asked over the last year. The sad part is, She's just not ever going to get better. but I'm trying to make her days a little brighter. .

Thanks to all of you . . Family and Many, Many Friends.

George