Sounds of Silence

Recently one of my friends told me I had gone "radio silent," meaning she hadn’t heard from me in a while. She was right. When you have Alzheimer’s, it is difficult to communicate. Bottom line difficult.

Since my diagnosis I have always struggled with phone calls. I have a hard time following the conversation and it feels easier for me when I can see the person. I can usually text or email someone ... until I can’t. The words just don’t seem to flow from my brain down to my fingers. I have so much to say and no way to say it. It is so frustrating.

I can't explain it

When I am having a particularly bad day it is even more frustrating. Recently I ventured to the grocery store and had an awful experience. I was not able to tell the people at the grocery store what my problem was. As a result, I felt humiliated.

When I finally made it home I was hysterical. I had a panic attack and also couldn’t tell my husband what the problem was. I still haven’t been able to communicate that to him. I know it is not my fault, but I have to take responsibility for it. I can’t explain it to people – it is all right there in my head if you could only peek inside and get it out for me!

It exhausts me to be involved

Because I can’t communicate effectively, I go silent. Fundamentally that is not me. I am a people person ... or I guess I should say I was a people person. Now more times than not I want to be by myself – mostly because I fear what I might say. I get agitated easily. I sometimes have no filter. I don’t feel like I can be a part of the conversation. I don’t want people to comment on how quiet I am. It exhausts me to be involved.

It is an issue because I know that socialization is good for people with Alzheimer’s. But finding the right balance can be difficult. I weigh each group setting I am getting myself involved in and try to determine if it is the best fit for me.

I worry my friends will exclude me

My friends are cognizant of it as well, but it is difficult for them to see it from my perspective. What starts out as a small quiet group can quickly become a large noisy group and that becomes difficult for me to cope with. Then, I go silent.

My insecurities crop up with the notion that my friends will start to exclude me because of my Alzheimer’s. I can’t say that I would blame them, but being a part of their lives is important to me even if I can’t fit neatly into their lives. I feel I am not able to contribute to their lives as much as they contribute to mine. Alzheimer’s robs a lot from us – I am trying to hold on to as much as I can.