Tuesday, January 21, 2014

The End , who knows?

When is this going to end? You will hear this from caregivers from time to time.

I think about it all the time. When will this end? I know it won't get better. And I can't imagine it getting worse. Even though I know deep down it will.

When you are a patient, and you deal with this disease 24/7, 365 days a year there are times when you think you simply cannot take another step.

Caregivers have to have experienced these same feelings. The only saving grace I suppose is that when a patient reaches the end stage, they don't have any idea of what is happening.

Or do they? That is thing I wonder a lot. We assume cause everything we read and hear that in the end stage the person is nothing more than a vegetable of sorts.

But what if. What if they can hear what is going on around them? What if they can feel the horrible feeling of starving to death cause they are denied food by not being on a feeding tube?

What if they are trying to reach out, to say something but of course the words will never come out?

What if they are lying there knowing exactly what is going on around them?

Why would anyone think of such things you ask? Well, as a patient I have always wondered about the end stage of dementia. Just as I have always wondered in my many years of EMS can a person hear you when they are in a coma?

Even though they are unresponsive, are they? There is a thing you do in EMS called pain stimuli. It's where you give the patient a deep chest rub, or prick them with a needle.

If there is no marked sign of pain, they are unresponsive. But are they?

Where do these people get their information when they say, "Your loved on will never regain consciousness again?

Especially when it has to do with a brain injury or dementia? It pretty brash to say that your loved one has entered into the final stage and they know nothing that is going on around them, they have no sense of fear, or hunger, or pain.

They can't hear a word you are saying, and they will never again. If you know anything about dementia you know that any stage can last a long, long time.

Know one can predict I will be in stage 5 for a short period, then move to stage 7. Just as no one can predict I am in the middle stage and will move to the end stage of this disease within a year or less.

It's a guess. Perhaps a calculated one of sorts. But still anytime anyone tells you they understand about the different stages of this disease, ask them how they came to know this.

I personally have been talked about on different radio stations during an interview and after the interview where the other guests there tell me I am in the middle stage of this disease. Really?

And this has been happening for over two years. These people don't know me, they know not one thing about me, except for what I am telling them.

Now one would think, if I am in the middle stage of this disease why would anyone take what I have to say to heart?

They don't. Unless of course it plays to what they have to say about me or the disease.

Just know this. There are no constants with this disease. The doctor's that tell you they understand about dementia or the different stages are the doctor's I would advise you to stay away from.

My doctor has never one time mentioned a stage I am in, let alone predicting what stage I will go to next. Why? Cause he knows he can't.

There is one person who knows what is going on, what will happen, when it will happen and when it is time for me to leave this earth.

I have all the faith in this person. And I pray to him everyday not only for myself, but everyone who not only has dementia, but those who care for us that do...