I Am So Sick of Dementia

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What am I going to do? I ask myself this all the time. I preach to others, "Don't let this disease dictate your daily life,” all while knowing it does just that.

Why? Because there are no breaks. None for the patient, and very few—if any—for the caregiver.

I just wish there was a two-hour window some days where I didn't have to deal with this disease; A couple of hours where things could be normal again.

There is so much time each day that I waste looking for something that is right in front of me, but I’m unable to recognize it for whatever reason. I waste time going from one room of the house to another without any idea of what I am wanting to do or even retrieve when I get there.

We frequently hear about medical trials for this disease and that disease. If you believe everything you read or see on TV, you would think a cure is right around the corner, but alas...

I'll tell you what I would be satisfied with. If someone, someday, would just come out with something that could make my day tolerable.

I'm not asking for a perfect day, just a tolerable one. I take a whole handful of pills twice each day to do just that, but things are not bearable. They really aren't.

The only thing these drugs do is make it so I really don't care that things are unendurable. And, for the most part, they do a lousy job at even that.

When people ask me, "How are you doing?" I simply say, "I'm thankful.”

Because I am.

However, being thankful has its limits. I am thankful for what I have and what I can still do. One day I will not complain about my memory loss, for I won't be able to anymore. I will lose all ability to communicate.

But, I wonder, will I still try to communicate? Will anyone around me be able to understand me if I am trying to say I am in pain?

There have been horrible diseases around since the beginning of time, but dementia is an incomparable disease.

I feel for the caregivers. They are my heroes. I know what I go through personally, and it must be terrible having to watch a person suffer with this disease and not be able to anything about it.

You won't find many days where I am steeped in self-pity. I almost always have something good to say about everything. There is always a bright side, if one just looks hard enough.

But I have been looking for one for over 10 years now. If, by chance, I would find a bright side, it is likely that I would no longer be able to recognize or remember it on any given day.

This is dementia, and I am so, so sick of it. Today, especially.

Rick Phelps became an advocate for dementia awareness after being diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. He was forced into early retirement and created Memory People, an online dementia and memory impairment group which supports over 7,000 individuals, all touched in some way by dementia.

While I Still Can

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8 Comments

Rick,
There is a bright side and it is that you are so very capable in expressing what it is like to have this disease, so that it allows caregivers like me to have some insight into what my husband might be thinking and trying to express to me.
Yikes... Rick... I do that right now... go from one room to another, wondering what I got up to get or do. It's's a little unnerving. I have to speak out loud why I'm going to the other room to remember. I wonder if maybe I'm not getting it. I just lost two checks we were supposed to deposit and needed badly... It's not a Wonderful Life when you pull a blunder like that! I can now understand the seriousness of this disease.. you have made it very clear. Thank you for being the voice behind the disease. I pray you continue as long as you can. What would you say is the most comprehensive list that defines how dementia looks so we can know when we think we have it? If anyone knows.... Thank you!
I have been taking care of my mom for the last 5 years, watching her get worse everyday. I'm so tired of it all, physically and emotionally. I try to keep a positive attitude about my life as I have a 9yr old son, but some days are harder than others. I'm thankful for all I have but part of me wants this journey to be over already. I pray for stength often but there are days I just want to give up. I love my mother but I pray for her life to end so mine can begin again, but guilt hits me like a rock to the head when I feel this way. I'm blessed with the support of my husband and sister who make this struggle more bearable. My prayers go out to all the caregivers who are struggling with someone with this disease.