How do I change what I say?

June 12, 2013 - Michael Ellenbogen

A few months ago one of my friends mentioned that I am always talking about things related to Alzheimer’s. While I know I spend my days advocating for this disease I did not realize I was that bad. Especially with those I am not trying to convince or influence.  Although I appreciate the person telling me, it has really bothered me.

I started to give it some thought and tried to understand why and what I could do to change that. Not too long after that my wife made a similar comment, and that really hit home because their comments to me were so close together.

I realized many things have contributed to this. The most important is I no longer work and I feel like I am locked in this house; I really have nothing else to do. I wish I could still be working and doing something meaningful, but unfortunately my skills required to perform those jobs are no longer there because of my Alzheimer’s. I use to go to work, I used to talk with others about many different topics, not just work but everyday world issues.

I have tried to have similar conversations with people about issues in the news, and I don’t always have the right information since I don’t always understand it all, and only retain bits and pieces. While there was a time I was a news junkie, now I can rarely recall many of the topics or even can tie other stories together in my mind so I can speak intelligently. I have recently found myself starting discussions that go south because I start out with part of a subject, and when we delved into it deeper I was at loss for information. I felt stupid because I could no longer speak about something I once found very easy. I used to be great about talking about political issues which really requires you to know what you are talking about, but now I can barely defend my position, and I do worse for even bringing the subject up, and then I feel bad because I was not able to point out the real issues so the person could really make a true assessment.

Since I have no real job I have made it my mission to advocate for Alzheimer/dementia. I try to keep my mind as engaged as possible. I also try to focus on things that most don’t,  like the high hanging fruit which is probably not the best for some on like me. That involves dealing with many high-level people. While I do good at first I don’t always have the answers they require, and sometimes may come across as not knowing what I am doing. It is very frustrating knowing that in my brain I have the answers, but I just do not know how to retrieve the information needed to help me do what I need to do. Especially when I need it the most, I may remember later on sometimes, but it’s too late. There was a time that I could retrieve everything to my favor and keep track of everything one person would say to me.

Then I finally realized I listen to the weather report multiple times a day and I never seem to know what the weather is supposed to be like, which I always use to know. I just do not seem to retain it.

I use to like reading the paper and I no longer do that because I have trouble retaining what I read or I don’t remember how the story relates to something I read a few paragraphs back in the same article.

I used to have hobbies that I can no longer do because of the disease. I use to love boating and tinkering with electronics. I can no longer do any of these things. I rarely do anything around the house because I am afraid I will make it worse. 

When I have conversations with others I do not always remember what we have spoken about in the past. I always hated it when you spoke to certain people and they keep repeating the same information you had spoken about in the past. I do not want to become one of them. There are so many discussions I want to have but I just can’t because the lack of my ability and more. I miss that so much. To have an intelligent conversation with someone that can reply with meaningful information, where we both walked away with some new and interesting facts would be wonderful.

I was never one to blow my own horn, but I do that today so others can see some of the steps I have made in hopes that they feel they are willing to take risks and help me expand my mission.

I have accomplished some great things and I think that is what I may share with my friends. Maybe I am repeating myself and I don’t know it. I keep trying to figure out how I can change, but I struggle because I do not know what to do. It seems that Alzheimer’s has taken over my life and not sure what or how to change.  

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