Wednesday, January 20, 2016

You Meet One Dementia Patient, You Have Met One Dementia Patient

"How is it some patients can do things my loved one can't do?"

We have said many times that every patient is different. You meet one dementia patient, you have met one dementia patient. They all are indeed different, just as we as human beings are all different.

What happens is very normal in human behavior. It's called jealousy. To  be blunt. It's not really jealousy, what it is is the fact that family members see someone who was perhaps diagnosed after their loved one was and they for whatever reason want to know how this is possible they are doing much better than your loved one. It's the "it's not fair syndrome"...

They don't think or realize that every patient is effected by dementia differently. Every patient is diagnosed and has had dementia for up to ten years prior to that diagnosis. They just didn't get dementia the day they were diagnosed.

And, no one knows, nor ever will know how fast this disease has spread with anyone. In other words, I was diagnosed six years ago this year. I had issues some five years prior to that. So I conceivably could have had dementia some ten years before my diagnosis easily.

Some will tell you that this disease starts in the frontal part of ones brain, then in time progresses. How fast it progresses and to what part, no one can tell you that.

So, if I have had dementia that long, then why is it I can do the things I can do, and maybe your loved one cannot get out of bed?

Why is that? That is the burning question. And this answer is easy. There is no answer. Not now. May never be.

Once again, the brain is the most complex organ in the body. No matter what you hear, or what any Neruo tells you, they haven't a clue as to why this disease does what it does.

How do I know that? Because I am a patient. This is not a guess I have. I live it. The best advice I ever got was from the first staff member of the Alzheimer Association when she came to our home about two weeks after my diagnosis.

She said, change your lifestyle. Now. Not in a few days. Change it now. And we took her advice. I stayed away from stress as best I could. I retired from EMS. I took one day at a time. Not worry about what six weeks, six months, or six years would bring.

I remember asking her, "Why is I can remember some things, yet other things, things I should know, I just can't?"

Her answer was simple. But it was so very important. She told us that night that I can, and may retain things that I am passionate about. It could be people, it could be events, it could be locations. It could be anything I am passionate about.

The one thing I was passionate about, and am to this day is bringing awareness to this disease. That explains why I can post the things I do. Now, that is an explanation at best. She doesn't know this. No one does.

But this is what the studies show. That some patients, and not all, but some patients can keep their faculties about things they are passionate about.

Here's the kicker. I loved to read. I lost that. I can no longer read or understand anything over three paragraphs. Haven't been able to since way before my diagnosis.

So, that blows that theory out of the water. Meaning, not everything you are passionate about, you are going to be able to do. My brain, no matter how passionate I was about reading simply won't allow me to do this anymore.

I can live with that, deal with that. Or I can sit around and complain about it. Just as some patients may no longer be able to walk, to talk, to eat on their own. Whatever it is. There is just things that you simply cannot do and never will be able to do again.

Being in Law Enforcement and EMS for over 24 years I had to do reports. Daily. Sometimes all day long. And these reports were seen by very important people. These reports had the potential of putting some people in prison for life at times.

They had to be accurate and they had to paint a picture. The people that would see them, the Prosecutors, the Judges, whoever, were not there. I had to put them there.

I was very good at what I did. And for whatever reason I carry that on today to some degree. Many times people want to know how that is possible.

How can he write like he does. How can he have the thoughts he does. How can he run this site of over 13,000 people. How, how, how???

The answer is easy. I can write still. But it takes me a lot longer than any of you imagine. You see my posts and think I just did them. This one for example I started two days ago.

I then have someone like Leeanne Chames or my wife proof read them. Not always, but most of the time. Why? Because I sometimes wander off topic. Why? Because I have dementia.

There are days I can't put two thoughts together to save my soul. There are days I can't even figure out what is being said to me. There are days I would just as soon stay in bed.

No one sees that side of me now. Not anyone. There are things that I deal with that my wife don't even know about. But the bottom line is, I can have a thought or two, I can string a couple of sentences together. I can do many things still.

And what I can't, I let go of. I can have a cup in my hand and be headed for the kitchen and by the time I get there to get another cup of coffee, I have no idea why I am even in the kitchen.

I can stop a sentence in mid stream and not have any idea what I was saying. I can not tell you have the time the names of our dogs, even Sam at times.

I am angry. I am lonely. I am afraid, and yes I cry.  I am not what people perceive me to be. I am a dementia patient. No better, no worse than anyone else dealt this awful hand of fate.

I do what I can to share how this disease effects me. I have for years now, and I will continue. To tell my story. To tell our story. For those of us who cannot.

But trust me. There is no dementia patient who has it easy. Nor is there a caregiver or family member who is dealing with this daily who is doing great.

That just doesn't happen. I may be able to do things now your loved one can't. I may not know my own name six months from now. Anyone who says different is just telling me what they think I want to hear, or they are ignorant of the disease.

Not ignorant people. Just ignorant of what dementia is, and how it effects each of us differently. It is my job to try to help change this stigma. And that is what it is a stigma of dementia.

And I will, try to change this. "While I Still Can..."


Did you know that the person who put pen to paper on the book, "While I Still Can..." fought with me ever step of the way. From the title to using things in the book that simply were not true to bring "drama" to it.

That wasn't done. And if I knew then what I know now, he would have never been involved in my book.

Why do I bring this up? Because I remember it. All of it. Why? Because I was and am passionate about what I do. He thought he could use me, tell me what to do. It didn't work. The book is indeed every word of my own.

Leeanne and I are collaborating on another book as we speak. What I am dealing with now, what she is dealing with working with me, how Phyllis June is handling all of this now...and much, much more will be in the new book coming soon.

It will be a page turner. And it will be all true, not dramatized. Not one bit.

© Rick Phelps  2016