Monday, February 3, 2014

The disease changes everything



I could very well become a recluse. This weather has a lot to do with it. The "Sundowners" and all.

It's a chore to get me to go anywhere. We have to go the store tonight and Phyllis June said, "I'll stop by after work and get you", meaning "You need to get out of this house".

I really dislike going to the store. Sam, my service dog knows it, senses it. He can tell when I am uneasy about anything. He was trained to do this and does it very well.

That puts him on high alert, which puts me on high alert as well. He is never out of eye sight of me, but when we are out in public his shoulder is always in contact with my left leg.

He wears a red service vest which says, "Working Service Dog. Do Not Pet". One would think people would adhere to this. They don't.

And it isn't always the kids. We were at a mall recently and walking through the food court. There at a table sat a security guard and two girls.

He thought it would be cute to call the dog. He was mistaken. Sam isn't a mean dog. He does however react to my demeanor.

The last thing anyone should do, especially a security guard is call a working service dog. One would think.

I walked over to the table where he was sitting, quietly said "Did you need anything?" I of course knew he didn't, he was just trying to impress the girls sitting there.

Sam of course was looking at him like a roast beef sandwich. Again, he knows by the tone of my voice I was upset. I confronted this guy, just to prove a point.

This happens, not quite to that extent, but it happens when we are out anywhere. The point I am trying to make, want to or not we patients do draw attention to ourselves one way or the other at times.

It was wrong of me to confront this guy, but he was one of a whole host of people who one would think has never seen a service dog.

When you are out anywhere with a dementia patient remember, they are most likely on pins and needles. Not about anything particular. Just the fact they are out of there element.

Their routine has been altered just by being somewhere they normally are not. A store, church, the park, the doctor's office, the grocery store.

As a patient, anytime I am out, I have a sense of urgency. The urgency to get back home where I belong.

As I have said before, I don't pay much attention to the different "stages" of this disease. That being said I am sure I am in the mid-stage most days.

Not "stage 3" or "stage 4", just the mid stage of this. I consider there to be three stages in my own mind. The beginning, the mid stage, and of course the end stage.

Some are worse, some are better. That is why I don't give much credence to "stages". You're loved one can be as calm as the driven snow, but just take them for a nice country ride, something they once enjoyed and that can be terrifying to them.

Try to remember, what once was, is no more. Things have changed, and nothing you do, or say is going to change that. Doing what a person once loved to do seems innocent enough.

When deep down, or right above the surface inside they are bout to burst with stress, nerves, and chaos ensues.

It's hard for the caregiver to understand this. The person they love, doing things with them they know they once enjoyed so much...but everything has changed.

Nothing is as it once was. From their eating habits, the their demeanor, to they way they lash out at you for no apparent reason.

There is a reason the patients do all of these things. And it's right there in front of everyone one of us.

It's the disease. Their brain has a disease. And as bad as it is today, this could very well be the best day they have. Ever...no one knows or can predict these things.

Deal with the here and now. Not what might happen, or what could happen, or even what has happened. Yesterday is just that. Yesterday. You may have lost many a battle with them yesterday.

But today you start a new. Deal with your successes with them. Will there be mistakes? Of course. Many. But again dwell on what worked, and don't get upset if it doesn't ever work again.

We need love, understanding and compassion. Let us know we are not alone. And if we do something that offends you, know it was not on purpose. If we could change things we could.

Just a bit of reassurance goes long way with this disease. I need to know most that I will never be alone. Don't tell me it will be ok. Nothing about this disease is ok, or every will be.

Am I safe?

Am I content?

Am I pain free?

If you can say yes to these three simple questions you are doing everything you can do for them.

And that is what everyone wants. Everyone...