By Rick Phelps, diagnosed at 57.
I watched both my father and mother die atrocious deaths. Cancer. It was a horrible death. The pain they both went through was terrible.
I have seen death, more times then I want to imagine. Working in EMS, Law Enforcement, you see things people do to one another and sometimes it’s just unbelievable.
Like many others I have always felt I had seen it all. But then this disease came into our lives and things changed drastically.
Nothing was the same, nothing would ever be the same. It’s a terrible thing to know what is happening to you and not be able to do anything about it.
And also know that as of today there is no cure, no way of slowing the progression and virtually no hope for patients at this time.
You’ll hear about the studies. There are always studies. I have seen study after study in the last five years I have been watching for things like that.
To this day, I can’t tell you one study that was started that you hear what ever came of it. It’s easy to tell the general public that a new breakthrough drug is on the horizon.
I personally gave up on listening to these “studies” or “breakthroughs” a long time ago. It’s like show me, don’t tell me.
I always try to remember how lucky I am. Seeing the tragic deaths I have seen, witnessing people I love and total strangers die horrific deaths. Some bed ridden for months, even years.
But still, having this disease is the worst thing I have ever dealt with in my life. The struggles that you face daily. The fact that you have for the most part all your faculties one minute and the next you have no idea what is going on around you.
Things change in the blink of an eye in your lifetime. This hasn’t been that at all. It has been a steady decline, a progressive thing just like they told us it would be.
I remember one of the counselors we were working with in the beginning tell us at our dining room table,
“You have to change everything right now. Today. There is not one day to waste. Do the things that are important to you. Take the time to be with ones you love. This disease is unrelenting. And it will in time take your life.”
We did change everything. We had no choice. I don’t allow stress to be in my life. Sometimes it can’t be helped. But it’s very important to keep things very simple in my life now.
I wish there was an answer to all of this. There isn’t. What works for me today may not tomorrow or ever again. There is no normal, only a “new normal” for dementia patients.
You will learn to deal with it, you haven’t a choice. There will come a day in every dementia patients life that everything will be taken from their memory.
Even the ability to breathe will no longer be something they will do. The brain will simply not function, not know to breathe to keep you alive.
Sound horrible? It is. Take the time you can now to be with the ones you love. Smelling the roses never meant as much as it does when you have someone who is battling this disease.
I hear birds now. Never heard birds before. I knew they were there, just never heard them. Its the simple things. Embrace them. While You Still Can…
Rick Phleps – Founder of Memory People