The Hardest Part Is Knowing...


I think the hardest part of this disease is realizing you have it. Knowing a bit of you is being lost every day.

Knowing one day, just not what day, but one day you will not recognize your family. The people in your lives, the caregivers if you will, struggle with this daily also.

I overheard our nieces talking over the weekend, asking each other if I was alright, if I had done or said anything I shouldn't have.

Knowing that these two have to ask questions like this just breaks my heart. They see their Uncle Ricky slipping away. I was unable to do the things I used to do with them at the water park.

I watched them, thinking to myself that I always hated to see parents not interacting with their kids at events like this. And now, I was or have become the very thing I hated.

It's the disease, it's always the disease. But just being there with them was enough for them. I know that. They wanted me to go down the super slides with them, as we have always done in the past.

But with this disease, it would never allow me to stand in line, in close quarters with hundreds of people. Even with my dementia service dog, Sam, there are limits, things I just won't do to bring unnecessary stress upon myself.

The Uncle Ricky they once knew, who could do all these things and much more, is no longer here. I do the best I can with them. And that is enough for them.

But I see it in their eyes. I hear the whispers to Aunt and Grandma Phyllis, "Why won't he get in the water?" She just says, "He can't girls..."

This and much, much more is what this horrible disease takes from you. I posted that the weekend went fine. And in a sense it did. I was not stressed, no anxiety, or fear.

But, one must know that the person I was, I am no more. It's hard for adults to realize this, let alone kids...

I wanted to post this so everyone knows and remembers that what once was, the person your Mom, Dad, or whoever it is, is no longer. What they once loved to do could now scare them to death. What they once loved to eat, they may now hate the very smell of it.

It's the disease that does this to us. I'ts always the disease. When I say or do something I would not have done in the past, I find that I don't catch it anymore. I am slipping. We all are who fight this disease.

It is without a doubt the hardest thing anyone will deal with, regardless of whether you are a patient or family member.

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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Dear Rick Phelps....this was some great first hand insight!! Thank you so much for expressing your thoughts much can be learned from reading this article!! Good luck to you...and keep posting.
You're very brave for writing and i thank you. I wish you the best (if that's an appropriate thing to say? )
Thank you for sharing this, AgingCare, and to Rick Phelps for explaining what you're going through and how this disease makes you feel. In this journey with my Mother in law, I learned the most from the patients who could explain just how they were feeling. She wasn't one to do that.

And if anyone is in need of support for this journey, please join us at Memory People, on Facebook, an Alzheimer's/dementia support group. I am Rick's assistant and we work together to support our members and bring awareness to Alzheimer's and other diseases related to dementia.

We welcome anyone, whether you're a patient, caregiver, family member, or you've lost your loved one. You will find love, support, and good accurate information, at Memory People.