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My Journey with Alzheimer's Disease

"In Alzheimer's there is no typical day, and that’s part of the disease, you never know who's going to show up. So the only way you can get through the typical day is to make a decision about the strategies of fighting and the strategies of keeping your mind honed and your body honed."

Greg O'Brien

Transcript

I had the unusual circumstance of being caregivers for my parents and seeing what they were going through.  Both of them died of Alzheimer's, so I had a sense of what the symptoms were.  When I started years ago, the short term memory loss, not recognizing people, it scared the s**t out of me, and I didn’t want to deal with it because at the time I was being the family caregiver to my parents. 

Once I got the formal diagnosis, I was actually relieved to know what it was, to put a name on it.  I mean, if you're going to fight an enemy, you have to know the enemy. 

Alzheimer's changes your personality so you have to fight to stay in the moment.  My mother named me Gregory, synonymous with gregarious.  I'm not that way anymore.  I can't be around a lot of people, I withdraw.  

Anger and rage is a big thing with me in addition to withdrawing.  I get angry when I can't remember something.  I get angry when I get lost.  Sometimes you strike out against the people you love most, which are family members where you're screaming. 

You realize in the moment when you're screaming at someone, when you have a—when I'm short with my wife or I'm yelling or screaming, or this disease also you have tremendous paranoia, which I'm dealing now, and I think she's thinking this for this reason, and it's not even close but my brain has told me that’s what this is all about. It's understanding when that moment comes that you have to say I'm sorry.  And in love, they accept it.

I think in Alzheimer's you have a choice from continuing to be a husband and a father or not.  I've chosen, to the extent that I can, even though I'm an imperfect one, to be the husband and father.  

When I had to figure out the new me, because that’s what you have to figure out in this disease, I went through my entire retirement.  I face bankruptcy someday.  But every day I'm getting up and saying today’s not the day, today’s not the day, today’s not the day.  It's going to come at some point where today is the day, but I'm going to fight like hell to push that off for as long as I can.

What is the future in Alzheimer's?  There is no future, there's just today and there's tomorrow, but you can't think beyond today and tomorrow because you don’t know what the third day is going to bring.  So you try to talk your family through it so they understand that we’re living for today.  When I check out I have a life insurance policy.  I wish it was more.  But there is no future, it's today, and that’s the tough thing.  But once the family tends to understand that, it brings you closer together and as I said, the great Bugs Bunny once said don’t take life too seriously because nobody gets out alive.

In Alzheimer's there is no typical day, and that’s part of the disease, you never know who's going to show up. So the only way you can get through the typical day is to make a decision about the strategies of fighting and the strategies of keeping your mind honed and your body honed.

I journal every day about what’s happening so I don’t forget things.  I have like 6,000 pages, equivalent pages in my laptop right now of notes and some of which I used to write On Pluto, Inside the Mind of Alzheimer's, and I'm working on a revised edition of it now which will be out soon.  So I've conditioned and disciplined myself to do that and that’s very important because if you don’t live a disciplined life in Alzheimer's, you're going to drift, and there are days when I want to drift, that’s what I call going out to Pluto.

When I was a young boy I was fascinated with the planet Pluto.  I don’t know why, something fascinated me.  It was distant, it was scary, it was mysterious, and when I became an investigative reporter and I used to write about organized crime and I talked to sources off the record in my early years as a journalist and I'd say we're going off the record, I'm going to take you out to Pluto where no one can hear what is said.  And so later in life my buddies would use to hear that, and doesn’t matter whether you're a guy or a woman, a lot of times we go by ourselves with our friends, whether it's a tavern or someone’s backyard and you talk about the unmentionables of life where everything stays there, and my buddies would say are you taking us out to Pluto, and I'd say yes, I am.

So when I started seeing my mom and dad go out to Pluto and then started seeing myself take some trips, I had to come up with a place I was comfortable with, and so I called it Pluto, and I want my—always want my family and friends to know where I am and there's going to be a day like my parents where I don’t come back from Pluto.  But Pluto is a perfect analogy of Alzheimer's from my perspective. If you want to know what the isolation and desolation is of Alzheimer's look at a picture of Pluto and look at that dense isolation and that’ll give you a sense of what many of us have to walk through.

So despite what anyone says, and we appreciate all the help and the love and we need that, we're on our own.  So when you're on your own you have to devise your own strategies.

To fight this demon, Alzheimer's, you can't do it without strategies.  In summary, I use my laptop to write everything down.  I use my cell phone to email myself.  I'll email myself 30, 40, 50 times a day in the moment because I know I'm going to forget it, boom, Greg, boom, Greg, boom, Greg.  Then at the end of the day I forgot that I emailed myself and I look in my inbox, I got 50 emails, and then 45 are from me. And what I do is I try to take care of my body and my mind.  I go to the gym every day and that’s very important.  

The disease progresses, and slowly, but there are times when it progresses quicker.  I've noticed with me more withdrawal now, far more rage, far more hallucinations than I ever had before….. I'm drifting out more now and it's tougher to fight to stay in the moment.

Every day you're a little less than what you were the day before, and you fight and fight and fight, which my parents taught me, to stay in the moment because if you don’t stay in the moment, you slip.

You need the help of family and friends, people who love you, you need the help of God, the universe, however, you want to talk about it, but you need to talk.  I think that’s important.

There are some blessings in Alzheimer's.  You have to look for the blessings sometimes, just like you have to smell the roses in life. One of the blessings, at least in our family, is it brought our family closer together.  We're talking about things we never talked about before.  We're talking about life and death.  We're talking about the will to fight, we're talking about the will to live. To have that opportunity to talk about those things as a family is a teaching moment and Alzheimer's has given us a teaching moment.

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