Thursday, December 4, 2014

What Am I Doing Here?

The last few days have been challenging. The nice thing about this disease is even when I have a string of bad days, I never remember them. 
I know I have simply by not being able to stay out of bed, and I am mentally drained. When this happens it is like everything is moving at a snails pace. 
Confusion is more prominent. Anxiety, stress, and fear set in. I am easily agitated, not at any particular thing or person, just am. 
Good days can be a struggle, but the bad ones are getting really, really hard. And more frequent. 
I have said many times I don't go by the stages of this disease. I can be in "Stage 2" this morning and be in "Stage 4" by this afternoon. 
To lump your loved one in a stage to me is never right. But for the sake of argument, I would say I am in the mid-stage of this disease. 
Meaning that my short term memory is completely gone and now some of my long term memory is fading as well. I find it difficult to recognize things.
My recent speaking engagement will show this. Friday's went off without a hitch, least not much anyways. I always lose track once or twice during a talk, but can look at Phyllis June and she can tell me what I was saying and it usually comes right back to me.
Saturday was not the case. They had some video people come in a tape my portion of Saturday's talk and it will be available to see when they get it posted on Southern Illinois University website. 
They are going to have a link for Mp as well. When you watch it, it is very obvious I was having trouble. Almost from the very beginning. And I think I may know why.
Friday I was addressing professionals. Such as doctor's, nurses, home health people, etc. And even though my story never changes I tried to keep it so the people could relate, as in being a doctor or whatever.
Saturday's talk was to family members and caregivers. And I had on my mind all day how I was going to address them, as being a family member or caregiver. 
That didn't work. I had never done back to back talks like this and also had never done them for two different groups in as many days. 
At one point in the video, you will hear me say, "What am I doing here?" My wife heard this, and as I turned to to her, she told me what I had been talking about as she has dozens of times before. 
The problem was, I meant exactly what I said. "What am I doing here." I had no idea where I was, what was going on or what I was doing standing on a stage talking to some 300 people. 
It was devastating. The audience did what they have done before, I tried to make light of the situation, and they kinda chuckled. But in reality I absolutely drew a blank. 
I have lost track of what I am saying many times before and that is fine. I always tell them it's the disease and it of course is. But I have never experienced the total loss of not knowing where I was, or what I was even doing. 
I rambled my way through the rest of the talk. Beings that it is not everyday people get to hear from an actual patient, I doubt if anyone picked up on the fact that I was totally oblivious to what was going on.
Phyllis June didn't. When I concluded she said, "You got confused, it happens"...but she had no idea I totally drew a blank. This tells me a person can at times hide this disease very well.
I unknowingly did this. The last ten or fifteen minutes of the talk I have no idea what I said. I then had to sign some books which is where you get many questions asked that people ask things they are not comfortable to do in front of such a crowd.
All in all the two talks friday and saturday went fine. What I learned from all of this is how little anyone really knows about dementia, how it effects someone and how they really cannot see the signs.
We have a long way to go. It was the first time in doing a talk anywhere I was actually scared. Not scared to talk to that many people, but scared to know that I had just had a few minutes to where I had no idea what was going on around me...and neither did anyone else.
I tell you this because many times I hear caregivers/family members say
"My loved one won't talk to me, they act like they are in the land of oz, and have no idea what is going on"
I have been in that condition. It's scary, and it makes you feel totally helpless. My fear is how many go through this everyday, every hour, every minute and cannot communicate it to anyone because of this disease?
I am not trying to worry anyone. But this is something that people need to be aware of. Your loved one may be going through or having horrific hallucinations and not be able to communicate it to anyone.
Or simply fumble their way through them, like I did on that Saturday. I still think of it. It was that bad of an experience. My one counselor told us that I will remember things that are important to me, that may even have caused some sort of reaction, good or bad.
This all started early in the day. I spoke at 3:00pm, but knew before lunch and right up to the minute I took the stage something was not going to go right.
And it didn't. I never would have dreamed what happened would have. It shook me to my core. And still does....
As always I do posts like this in hope it will help someone else. It's not to draw attention to my problems. There are many, many far worse off then I. My hope is it helps you the caregiver to know what could be happening with your loved one.