You might have noticed that since early May Dotty has not had a lot to say. When you see Dotty Says in the title box it means that Dotty is more engaged. More connected to the world.
For those of you that have been here, you know that when Dotty was in the 6-18 week period during the Dimebon clinical trial she became very engaged. The more I think about it and compare that period to the last six plus years the more it astounds me.
To be clear, during that period Dotty's memory did not come back. Bits and pieces of her personality did come back. Because she was more lively and "more there", there was a very subtle improvement in her memory. For me. Well, I thought I had the old Dotty back during that period. Not all of her, but enough that she seemed like a pretty good version of her old self.
Her memory. Was Dotty's memory just a little tiny bit better because she was happier and more engaging? I think so.
Shortly after Pfizer (PFE) Medivation (MDVN) canceled the Dimebon clinical trial, Dotty became very ill. This happened around May 17. She couldn't get out of bed, she couldn't walk, and she was "not there". It happened over night.
Was it the come down from the Dimebon? The withdrawal? Or did Dotty just get sick?
There is no answer to this question.
Dotty didn't have a high fever, nor did she have the dreaded urinary tract infection. She did get a chest Xray, a series of blood test, and a CT scan of her stomach/pelvic area. The CT scan looked suspicious but inconclusive. She was given an antibiotic as a precaution to pneumonia and after a week she started to get better.
It won't help or change anything to speculate on the cause.
Now, in the last two weeks Dotty has a lot more energy. You heard her on the CinchCast and you saw the two recent pictures I put up yesterday.
This time around the glass is half full and half empty.
At first, Dotty's new found energy was driving me crazy. She is getting into everything. Moving things around. Throwing my mail in the trash. Telling me she wants to get a job. Complaining constantly that she can't get anything to eat. Telling me she is going to walk to the store so she can get something to eat. Most of this energy is falling on the negative side.
Now to my point here.
Yesterday after I posted Dotty Says, Bobby Says, I took a good hard look at the pictures. I was stunned. Take a look at this picture of Dotty that was taken the Sunday before last.
Dotty at the Banana Boat -- Last Week
Does that look like a 94 year old woman with moderate to severe Alzheimer's disease? Look at her face. She looks pretty good to me. I said to her smile, she did. Also notice the nice bright light. Bright light is very important for people that have Alzheimer's.
Frankly, I am surprised looking at that picture now. I don't remember Dotty being overly happy or "so much more there" at the time. But that look on her face, well it paints a very different picture.
This is the second picture I put up.
Dotty fooling around with me. Nice hat?
Notice Dotty is laughing. I was laughing with her. I put that bag on her head and decided I needed a picture of it. That was a pretty hearty laugh for a person with Alzheimer's.
Late yesterday afternoon Dotty and I went out to run some errands. Our third stop was Walmart. Dotty stayed in the car on stops one and two. As we pull into Walmart, Dotty says,
"this will surprise you, I am going in with you".
Yes, I was surprised. I mean it was the first time in many years where Dotty announced she was going to do something and actually did it. The usual conversation is Dotty announcing that she is going to do something -- tomorrow or next time.
From May until recently, Dotty and I were not doing a whole lot of anything. This started because when she became ill she was too weak to do anything. For the first couple of weeks she was in a wheelchair.
I guess you could say I am conflicted right now. Dotty is doing some things that drove me crazy in the beginning. Like opening the refrigerator door and leaving it open why she tries to decide what she is going to do.
For example, she had it open for about ten minutes while she was trying to make herself a sandwich late at night. She didn't get out what she needed. She made the sandwich right in the refrigerator with the door open. With the refrigerator alarm beeping away. I suppose she doesn't hear it, or, she doesn't know what it means.
Five years ago, I would have gone into the kitchen. Moved her out of the way. Closed the refrigerator door. And tried to explain to her that you can't leave the door open. This of course would have bent Dotty out of shape. She would likely throw the sandwich on the floor and head for her bed.
The result of my behavior and her behavior -- a stomach ache for me and anger and unhappiness for her. Unhappiness all the way around.
This time around, I just let Dotty get her sandwich and I did not step foot into the kitchen. I just stood back and thought to myself -- this is the lesser of two evils. And, this is how you have to operate in Alzheimer's World whether you like it or not.
Dotty got her sandwich and didn't run for the covers. I was a bit bent out of shape for a bit, but I didn't feel like the world was spinning out of control. The entire episode was over in a matter of minutes; instead of the hours of anguish we both use to experience.
Right now, I can only assume that the big doses of activity, socialization and bright light are having a big positive effect on Dotty's energy and awareness levels.
You could say I am relearning something I learned before about Alzheimer's caregiving. You have to live your life -- all of it. I think I forgot this for a few months. Or maybe I was just disappointed and stopped thinking.
I'll keep you posted. I have no idea what is going to happen next. I do know this, weather permitting we are going to the Bananna Boat this weekend. I have to get a recorder to go with my camera.
You comments and insights are welcomed.
My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 94 years old, has Alzheimer's disease. We are back living our life that way we always had.
Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,810 articles with more than 89,500 links on the Internet. Bob resides in Delray Beach, FL.