DON BUTTERFIELD, the SEQUEL

I wrote my life story in 2000, which concluded with my being diagnosed with Alzheimer’s at Mayo Clinic in Rochester. Has anything like this ever happened to you? Can you imagine what a frightening experience it is? At the time I felt capable of doing everything I had been doing and it was staggering to hear them tell me to go home, turn in my driver's license, assign all our business accounts to another family member, and keep no personal authority. I want to update it now in case what I learned through these intervening years might be helpful to someone else.

I came back to Osceola and broke the news to my friends. It was interesting how people reacted when they heard the report, and how unnaturally they treated me. I met people who knew me, and they'd smile and look at me like, "My gosh, he's still alive!" Sometimes they didn't know what to say. Bob Toland did as he always had done - whenever he saw me, he gave me a hug. And it was great when he said, "I think about you a lot." I knew what people were thinking and how awkward they were feeling. There were those who simply said, "Hi," and that was enough.

Glimmers of hope were from conversations with Dr. Jim Kimball, who was sure the confusion that became evident when I had the test at Mayo Clinic, was due to medication I was taking, rather than early stages of Alzheimer’s. Dr. Tindle believed I'd had a number of small strokes. It was encouraging but I still proceeded on the assumption that the diagnosis had been a correct, because I found myself doing things that were not natural. I left lights or the oven turned on, I had difficulty learning to operate the microwave, I lost the ability to work with figures, which has been a skill throughout my years in business. I've never had a problem finding my way around Des Moines, but one day I left Miriam at the hairdressers where she always went, turned a corner, and didn't know where I was. Some things seem kind of laughable. One day I washed the neighbor's car. I had gotten a bucket and was washing away when Miriam asked me what I was doing. Dumb question, I was washing the car, but then she pointed out it wasn't ours, it was the neighbor's. What I might have attributed to getting older or having too much on my mind suddenly seemed to confirm the Alzheimer’s diagnosis.

We have attempted to cover for me. I now wear an identification bracelet. In case I get lost, someone can identify me. We put in a security system, actually not to keep people out but to keep me in. Shelly Thomas taught Miriam to take care of our finances, and Miriam has taken over the driving. Neither of those would have been her preference, but this is another aspect of the illness. It doesn't only affect the person who has it, but the entire family. Wally had a hard time accepting it. He just didn't mention it. It is probably called denial. Toni calls every week and begins with, "Dad, how do you feel?" Jill mentions I am not as jolly as formerly.

I have read everything I could find about mental illness. I discovered that Alzheimer’s and deep depression are so similar that it is difficult to tell which is the problem. Miriam and I have gone to the Mayo Clinic for many years, and since 1996 they have talked to me about depression. There are varying degrees. Some have it so lightly they don't think there is anything wrong with them. With others, of course, it is more evident. Even a lack of self-esteem can bring it on, and childhood environment can be an influence. However, in 1996, they told me, "If you are worrying about having Alzheimer’s, you don't have it. People who have it don't worry about it." In 2000 they didn't say that.

Another complication has developed - I have body tremors. This goes on practically all night every night. I also have nightmares in which I am arguing or fighting with someone. I beat the pillows, and I really am scared that in one of those dreams I might hurt Miriam. I have suggested that either she or I sleep in another bed. We have slept together for 50-plus years and it is just another adjustment that we might find it wise to make. Miriam has had to make the most adjustments. She would have preferred not keeping books or paying bills. She has had to make decisions that formerly she would have turned over to me.

It was suggested that I join a support group for Alzheimer’s. They sent me a lot of information and I read it all. However, the material looked more like information for the person who was caring for the Alzheimer’s victim and not the patients themselves. I cried myself to sleep the night after I had talked to the social worker about it. I really can't tell how many times I considered suicide because of this low morale.

In an attempt to correct some of these problems, the psychiatrist cut back on the drug he had prescribed.  I simply don't understand people being on drugs. They are powerful and no one knows what they will do to the brain. That is so frightening!

Miriam and I made some preparations in case.... We redid the kitchen. In this arrangement our back yard becomes almost part of the house. That is so important to us. I like to mow, and early each spring Miriam begins to look for flowers that will be planted out there. We put a bedroom and bathroom on the first floor. If this might enable us to stay together in our home a few extra years, it will be worth it.

Socially I seem to do fine. We probably average about one couple a day who comes to visit us and that helps a great deal. Bob Hettinger has been a good friend for lots of years. He did our taxes this year and stops regularly, doing little chores for us. Bruce Harris comes by and we have good visits, as we always have.

The good news is that there is research going on all the time and some day they may have answers that are not available now. However, because Fern had written my original life story, we decided to continue and note signs of progression, such as on May 30, 2002, we noted that I went to her home saying, "I've been thinking...which is more of a job than might seem to be the case." We remarked about how many facts of life we take for granted. But that day after my shower, I had put on my underwear and socks. Then I was stuck. I couldn't think how I was going to get the socks up around my waist.

Same date: We were invited out a few nights ago to play cards, and I was uneasy, wondering if I remembered the game. Then I won high for the evening! I chuckled to myself, thinking that didn't say much for the other players. It is strange how alertness comes and goes! Wally and Andrew will be flying up so Andrew can play in a golf tournament. I think it will be good for Wally to see for himself that his father is much like he has been. I suspect his imagination has led him to expect otherwise.

In July 2002, we had friends coming from London. It is interesting how close we have been to David and Valerie, I suppose for nearly 30 years. Miriam and I had signed up for a tour and it just happened that we were the only four taking it. That began a wonderful friendship. I wonder if they will notice a difference. (In a later notation :) That week was probably the best I've had in awhile. We showed them points of interest in northeast Iowa, which we had done before.  In the past, however, we'd tried to cover too much territory each day and about wore ourselves out. This time we did about 200 miles a day and it was much more enjoyable.  The big event was on Saturday night when we hosted a party with about 30 guests. In addition to local friends, Jill, Ernie, and Ashley came. Everyone had such a good time. Bruce (Harris), Jim (Kimball), and David were a trio singing to Bruce's guitar playing. They said they were teaching David to sing hillbilly.

In August 2002, I saw the psychiatrist at Veterans' Hospital. She is a young girl from India and has a soft voice. I was impressed with her. She asked me why I was there, and I told her I had Alzheimer’s. She asked who told me that and when I said Mayo; she responded with, "They start with the assumption of the worst and that you can't get better. I approach it from the angle that you don't necessarily have Alzheimer’s. That is what we are here to find out." It was interesting to me that the pills she prescribed were the same ones I'd been taking. She said, "The drug takes up to six months to get into your system. You've been taking it long enough that something should be happening. You should be feeling better and having a better attitude. I'm in hopes we can do something for you, and I think we can." Visiting with her, made me feel better.

I heard Charlton Heston on television a few nights ago. He said that he has the symptoms of Alzheimer’s, and that he is going to do everything he can to address the problem, and so will I. I liked his saying, "If I say something twice, just smile and ignore it."

Since we wrote the last portion of this account, we have seen Jason and Mindy, and our great­grandchild Catherine. She's really cute. I don't generally care much about babies, but she is really cute! I also have acquired a cat, in spite of Miriam's resistance. He is 10 years old, and we got him from a shelter in Milford. His name is Boots, and he is nice. Every time I sit down, he is in my lap, and he's a great comfort.

In November 2002, Bill and Pat Hall came from Phoenix to visit us. Bill and Pat had been close friends when they lived in Osceola. We have exchanged visits ever since they moved away.

The biggest news was a report on CBS evening news. Miriam came running to say they were talking about the latest information on Alzheimer’s - a research clinic had completed brain surgeries on 17 people. As I understood it, they placed a shunt in the brain which went to the spinal cord. The fluid from the spinal cord ran over the brain and cleaned away the plaque. While it didn't cure the disease, this stopped it from progressing beyond that point. (Actually, if it didn't progress beyond the point I am now, I could live with it.) The process has been approved by the FDA and they were trying to find more people to participate in the program.

I called Iowa City, wrote to Mayo Clinic, and talked to a person at Veterans' Hospital at Knoxville, none of whom gave me any satisfaction. I decided to call Mayo Clinic. Dr. Jones returned my call, saying that Mayo Clinic is not doing this procedure and it was a very risky operation. However, even though they were not doing it, they weren't condemning it. They just weren't encouraging people to do it. It would have to be my decision. At that point it seemed to me the only option, but when I told Jim Kimball about the surgery, he said they had done a similar procedure on Mary Ellen's father years ago. It didn't particularly help and he never was the same after that. A hope shot down.

In 2002: We have tickets for a trip to Atlanta on November 28, Thanksgiving Day, to return December 2nd. (On return :) This was the first time we had seen the home Wally is building. One night I was especially tired and went to bed before anyone else did. The space between the bedroom wall and the bed was about 16 inches. As I was getting into bed, I fell to the floor. I was wedged between the wall and the bed, with my arms underneath me. I was really stuck. I tried to move but couldn't. I called for Miriam, who saw me and asked, "What are you doing down there?" I said, I'm stuck. Take my feet and pull." That didn't work. We tried the one-two-three pull method. She was laughing so hard, and I didn't think it was nearly that funny. She finally freed me and then wondered, "Why didn't I just move the bed?" It was a fine time to think of that!

At the present time, it feels like a new life has emerged from all this. Instead of sitting, drooling, in a hallway of a nursing home, I can walk, I can talk, I can see, and most importantly, I can think! Dr. Larson of Mercy Hospital, to whom Dr. Joe Kimball sent me, confirms that the original was a misdiagnosis. Veteran's Hospital took an MRI and it showed I'd possibly had two small strokes, which my friend Dr. Tindle said all along. This has been confirmed by a neurologist at Knoxville, and I am agreeing with Miriam and friends who never fully accepted that I had Alzheimer’s.

What an incredible reprieve! It is hard to relate what these last five years have put us through, but we have learned a lot! Granted, I have lost some abilities. What 78 year old person hasn't? But for what I am able to do, I have gained an appreciation I would not have had without this experience. Maybe we never truly realize what treasures we have until we are in danger of losing or have lost them.

My hope for sharing this with you is that you might find within this account some ideas for coping with a similar diagnosis. I am not in a position to advise anyone else. There may have been better ways for handling it than the ones we chose, but I am inclined to say: Don't panic and don't give up. Do everything you are told to do, and educate yourself as best you can. There is now a wealth of material available in print, on television, and the internet. Keep your sense of humor. Be able to laugh at yourself. It isn't always easy but it's possible. And don't shut yourself off from the world. Others will help you. They helped me.

Return to main page for Recipes for Living 2005 by Fern Underwood

Last Revised November 23, 2012