What Am I Doing Here?

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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.

However, I know I've had a few simply by not being able to stay out of bed, and due to the fact that I am mentally drained. When this happens, it is like everything is moving at a snail’s pace.

Confusion is more prominent. Anxiety, stress, and fear set in. I am easily agitated—not at any particular thing or person. I 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 that I don't go by the stages of this disease. I can be in "Stage 2" this morning and then in "Stage 4" by the 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 indicates this. Friday's event went off without a hitch—at least not much anyways. I always lose track once or twice during a talk, but can look at Phyllis June to tell me what I was saying and it usually comes right back to me.

Saturday this was not the case. They had some video people come in to tape my portion of Saturday's talk, and it will be available to watch on the Southern Illinois University website.

They are going to have a link for Memory People as well. When you watch it, it is very obvious (almost from the very beginning) that I was having trouble. And I think I may know why.

Friday I was addressing professionals such as doctors, nurses, home health people, and the like. Even though my story never changes, I tried to keep it so the audience can 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 differently.

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 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 had 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. I tried to make light of the situation, and they kind of 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 is, of course. 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. Being that it is not every day that 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 that a person can hide this disease very well at times.

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 when people ask questions they are not comfortable with asking in front of 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 affects someone, and how outsiders really cannot see the signs.

We have a long way to go. It was the first time in doing a talk anywhere that I was actually scared. Not scared to talk to that many people, but scared to know that I had just had a few minutes 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 every day, 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 having horrific hallucinations and not be able to communicate it to anyone.

Or perhaps they 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—things that may have even caused some sort of reaction, whether good or bad.

This all started early in the day. I spoke at 3:00 pm, but knew before lunch and right up to the minute I took the stage that something was not going to go right.

And it didn't. I never could have dreamed that what happened would have. It shook me to my core and still does...

As always, I do posts like this in the hope that it will help someone else. It's not to draw attention to my problems. There are many, many far worse off than me. My hope is it helps you, the caregiver, to have a better understanding of what could be happening with your loved one.

Rick Phelps became an advocate for dementia awareness after being diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. He was forced into early retirement and created Memory People, an online dementia and memory impairment group which supports over 7,000 individuals, all touched in some way by dementia.

While I Still Can

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9 Comments

Rick, I am so grateful for all that you share. Yes it helps those of us that care for others with dementia. We are in a time where awareness of the disease is increasing. If only there was a way to get through to the many that are in denial of what this disease takes from a person and their family bit by bit. I am sure your willingness to be open about the disease and its profound and devasting effect on the lives of so many will perhaps be that window to just a bit more understanding by some.
Hello I'm a 43 year care giver and I've been experiencing some of the same symptoms as you such coming to a blank or simply forgetting something so simple. Any advice as to why this is happening at my age?
Hello Rick, I just discovered your blog today. I've been reading a lot about Alzheimers and Dementia since my stepmom has been diagnosed with dementia and the county has placed her in a Nursing home in Buffalo. I live in Florida and was unaware of her condition. Now that I know, I am trying to stay very involved and I want to do what is best for her. My father died in 2001 and had early stage Alzheimers. I appreciate very much you sharing your life and experiences with the rest of the world so that we can understand better and be more able to take care of our loved ones. Thank you so much. Keeping your sense of humor is so important. I found that out when I had cancer. :)