JOAN’S BLOG – APRIL 5-7, 2010 –APRIL'S GUEST BLOG BY TRACY MOBLEY – THROUGH THE EYES OF THE FOG

This month, Tracy Mobley writes about what it feels like to have dementia.  For those of you who are not familiar with Tracy, she is a 45 year old married mother of a 15 year old son, Austin. Her husband, Allen, has stood by her, and struggled with her Early Onset Dementia (Frontal Lobe) for 7 years. Tracy is the author of Young Hope/The Broken Road, and founder of Camp Building Bridges, a respite camp for youngsters who parents have Dementia.

I am honored to present Tracy’s April Blog – “Through the Eyes of the Fog.” 

Through The Eyes of Fog

People have often ask me what it feels like to have Alzheimer's or frontal lobe dementia and the easy answer is, IT SUCKS!!! But to give you a clearer picture -  it is a living Hell. Imagine how frustrating it is to not be able to remember your last words spoken, even though it was just a few minutes ago and so you repeat yourself several times, only to be told by your spouse or your caregiver that you had already said that. They ask, “Why are you saying it again?” And your thoughts are, “If I knew I had already said it, I wouldn't be repeating myself.” It is a vicious circle, one that sadly can't be broken.

We see our caregiver as a person who loves us, but yet we can't understand why you are taking so many things away from us. You are constantly telling us what to do and even how to do it. We are people in our 40's and 50's, though some much older. We are adults who have taken care of ourselves and been dependent upon ourselves for most of our lives and now, you hide our keys so we can't drive the car, you take the checkbook in fear we might spend too much money, you hide the sweet treats because we might eat too much. You spend most of your time telling us what we should do rather than letting us decide for ourselves. Then you wonder why we become dependent upon you for survival.

So what if I skip a shower every other day, it's not like I was out playing in the dirt. If I don't eat it is because I am not hungry. You don't always know what is best for me, so please don't get angry with me and say mean things, as I still have feelings and I can feel pain even from the heart. I may not touch you like I used to or even say, “I Love You” like I used to, but I do. I have just lost the way of expression and need a little help. Don't be upset if I don't reach for your hand first, just gently reach for mine, and I will grab on. Hugs and kisses don't come as often either. It isn't that I don't want to, it's just that those are fleeting thoughts that are few and far between, so don't wait for me to make the first move. Listen to your heart as your return will be greatly rewarded.

We have our “good” days and our “bad” days. On our good days, you may think for just a moment that this is all just some horrible nightmare and we have to wake up. We step in time and our judgment is good, but then we are reminded on our bad days that this horrible monster is real and the only thing to make it better is to reminisce about the good times. Even though our memories may be short and fogged by the dementia that is robbing us of our lives, we are still a viable part of society and should be treated as such.

©Copyright 2010 Tracy Mobley

Respect. Those with dementia want to be treated with respect. That is what I read as the main theme of this blog. Yes, their judgment is not what it should be, which is why we step in to take away what they feel should still be their rights. But Tracy has made me see that there are things I should do to treat my husband with more respect. He has extreme difficulty making decisions, but I need to have more patience and give him the time to make up his mind between two, rather than four, places to eat; movies to see; activities to attend. I have learned not to fuss over daily showers and shaves, and I try desperately not to say anything that will hurt his feelings. If I slip, I always apologize.

It is a tough road on both sides. Since we only know our perspective, I am forever grateful to Tracy for showing us our spouses’ perspective.

Please post your comments on the Message Boards:  Tracy’s Blog – Through the Eyes of the Fog.

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©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
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