We have a special guest blog from Rick Phelps. Rick was diagnosed with Early Onset Alzheimer’s Disease in June of 2010 at the age of 57. Rick is passionate about bringing awareness to this disease and is the Founder of Memory People, an Alzheimer’s and dementia support and awareness group on Facebook. We hope that you will take a few moments to read Rick’s story to learn more about this disease and how devastating the effects can be on anyone that suffers from it.
When you have this disease there are times when you know things just aren’t right. It’s very difficult to explain, but I remember when I woke up one day and could no longer understand the concept of time.
To say it was scary is an understatement. That day changed everything. Everything we do in our daily lives revolves around time. You know when to be somewhere, because your brain has this internal clock that is in the back of your mind telling you, I have to get the kids after school.
Or to lay something out in the morning for dinner that night. The list goes on and on how your brain tells you, “Hey, it’s time to check the roast.” or “I have an eye appointment tomorrow @ 9:00am.”
When I lost the concept of time I was sure there would be nothing worse that could happen. I was wrong.
For weeks now, slowly but surely I have noticed I can no longer recognize things. I look for whatever it may be that I can’t find, and found I can be looking right at it and not see it.
My brain no longer allows me to understand or recognize what I am looking for. I searched for the tv remote, looked everywhere. Took the cushions off our recliner, moved it thinking it may have fallen under it.
Looked all over the front room, and even some other rooms, thinking I may have had it in my hand and laid it down somewhere. Then hours later, for whatever reason, I seen it.
Right beside the chair I sit in, on the magazine rack right where it is always kept. It had been there all along and I did not see it. Or rather I seen it, but did not recognize it.
We are putting in our old counter tops from the kitchen in our garage, with the guidance of my Uncle who has been doing this type of work his entire life.
I can’t tell you the problems this has created for me. We wanted the sink, counter tops, and we are putting in a couple other shelves for storage. Will be very nice when we are done.
Problem is, I can’t find anything. If I am using my drill, and need to change from a drill bit to a Phillips head, I can be looking right at the case that holds the drill bits and never see it.
Every time I need something, a ruler, a screw driver, hammer, nail, pencil…things you would normally just look at and know it’s what you need, doesn’t work anymore.
This has been an issue for some time. Couple months. But like this disease always does it is progressing, getting worse. I finally broke down last night and told my wife, Phyllis June.
We don’t keep things from each other, but I had this because I knew it would just upset and worry her. I know there’s nothing that can be done. Deal with it, it is my “new normal”.
It’s just something I never really even entertained happening. Or if I did, I had forgotten. Not being able to recognize things is devastating. Not knowing where I put something last.
I can open the refrigerator to get the milk, but once I open it I cannot find the milk that is right there in front of me all along. My next doctor appointment isn’t till Oct., but with this revelation I am thinking of having Phyllis June call and see if I can get in earlier.
But then I think, why? There isn’t a thing he or anyone else can do. It’s just normal that when something like this happens you want to get it fixed. Find a pill or some procedure that will make it possible so I again can recognize what I am looking for.
Wanting things to be normal. That’s what we all want. Instead we have to deal with our “new normal” which is forever changing. I worry, I wonder, what could possibly next?
But deep down I know, that is the one thing I also dread. It is a form of denial. Knowing what is coming, yet saying I wonder. You simply must deal with what you have, or I should say what you used to have.
The worst thing about this disease for me is losing my mind, and knowing it is happening right in front of me. And not one person on earth can slow the progression or stop it all together…
Is it any wonder patients lose their composure? Become agitated over almost anything? Even become abusive, or recluse? I could imagine, except now I am living it.
Daily, hourly, every minute. It’s the disease, it’s always the disease…and some days I can’t take another second of it. Today is one of those days. With many more to follow.
We’d like to thank Rick for sharing his personal story to bring awareness of this disease to others. To learn more about Rick and his story you can visit his website at http://whileistillcan.net
If you or someone you know has been touched by dementia or you’d like more information, please join other patients, caregivers, and advocates all walking this journey together at the Memory People Facebook page at