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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.

Comments

Comments (9)
Pelican
January 17th, 2021 7:03pm

Reading this current Transcript took me back to my walk with my Mother through Alzheimer’s Disease! It was a daily....moment to moment ever changing walk! I kept a Journal daily describing the progression of the disease...behavior changes...coping mechanisms...all the devastation of the disease...as well as the emotional turmoil a caregiver goes through in trying to give their loved one dignity and peace “in the midst.” When my walk with my Mother through Alzheimer’s Disease was completed, I knew I had to write her story...my story...our story in an attempt to help those who had walked...those who were walking...or those who would ever walk with a loved one through Alzheimer’s. My book, Joy In The Journey Walking With Grit and Grace Through Alzheimer’s Disease has been a blessing in so many lives since it’s publication a year and a half ago! It has given a true picture of the devastation of the disease...while giving a picture of the blessings that can be received and the moments of joy those blessings bring!! I commend you for your writing! Your honesty and your willingness to share your thoughts will enable others to navigate Alzheimer’s in better ways! My heartfelt prayers are with you and your family as you continue to walk together through Alzheimer’s Disease! KEEP WRITING FOR THE GOOD OF ALL MANKIND into the future!!

Janice
January 17th, 2021 7:03pm

Thank you for sharing. My husband has started his journey and some days I wonder what is going on in his mind. So far it has not been horrible and I always look on the happy side of our life come what may!

Jane P
January 17th, 2021 7:03pm

Just started reading Greg’s book ‘On Pluto’. Lost my mother about 10 years ago after watching her lose her identity and then her self to the disease. And feel the fear of it sneaking up on me and worry for my family. Trying to share all the organizing details of running our lives that I have done without much assistance for the past 54 years.
Have been taking part in clinical trial, until Covid hit. Really hoping someone finds a magic pill!!

Laj
January 17th, 2021 7:03pm

Thank you for sharing your personal story. Typically, we read the experiences from a family member’s perspective, which is certainly valuable. Yours is truly special.

Daddy’s Girl
January 17th, 2021 7:03pm

I was one of my Dad’s caregivers and watched him go through this, and I feel so blessed that I was, was it hard, absolutely, but I would not have had it any other way....and now I have it, I’m still living alone with no big issues, other than having to quit my 40 year nursing career due to charting errors but at least I know what is to come, I’m blessed with 2 daughters that live close by and I see frequently, they will be here when I need them, and for that, I feel blessed....

Rosie
January 17th, 2021 7:03pm

I urge you and any others concerned to research and seek medical expertise, in the Alzheimers field ASAP. Clinically, there have been recent discoveries that may stave off, or eliminate symptoms.
It is SO important to establish a solid relationship with a medical team, early on in this diagnosis!
My mother, unfortunately, did not have access to the medical help that is available now. Her journey was a long and arduous one. I wish I knew then, what I know now!

Dahlia
January 17th, 2021 7:03pm

My Mom had dimentia and she died from COVID 19 in May6-2020 she was almost 95 and lived in a nursing home the last 5 yers of her life. I could not take care her anymore but I started to notice after she had stroke at 85 that she was totally different forgot how to speak Inglish spoke only Italian. I’m 72 and the past 2 weeks I made a few mistakes in a dentist appt. and I can’t think fast enough, I’m in the middle is conversation and forget the word that I need to say and people help me find that word or that name. Should I be worried. I’m also in a state of grief lost my husband and I’m stil in shock of his death he was 71 Thank you for listening

Jonel
January 17th, 2021 7:03pm

This is so great to be able to learn about ALZ from someone who has been a caretaker twice of parents and now is dealing with own self with the disease. Amazing insight you shared to help me get a better perspective from someone actually living it. I have a better understanding when you describe its like going to Pluto. On the brighter side like Bugs Bunny said to live and enjoy each day because no body gets out out of this world alive.

Connie
January 17th, 2021 7:03pm

I had to quit my job at a community College that I had for 25 years. My husband is a nurse but he has emphasema, so he does the heavy thinking and I do most of the chores. He is very patient with me when I ask him the same question 3 or 4 times. I keep myself busy with puzzle books, latch hooking, and other crafts.

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