Living with dementia – one man’s story

Alzheimer’s sufferer Brian LeBlanc explains how he fights the fog.

Living with dementia – my story

Edited by Janelle Ward

Brian LeBlanc has Alzheimer’s. He describes his journey on WebMD and tells how he deals with the daily battle and what lies ahead.

•••

Pretend you're driving in a car, and you're going down a road and it's a beautiful day. The trees are all in bloom in different colours and the sun is shining. But then when you round the bend, you hit a fog bank. And so your natural reaction is to just slow down and proceed very, very slowly. And you just keep going like that until the fog clears. After the fog clears, then you continue on, until you around the next bend. And then you hit another fog bank.

Fog is the best way that I can describe what happens. You go through all these things, and you have to remember – gosh, I can't – I'm having my moment. Yeah. Gotta remember what I said. I'll just make it up as I go. I get what I call brain fog.

Me: Hey Alexa, what's my schedule today?

Alexa: You need to eat breakfast at 9am. Want me to remind you?

Me: No thanks.

It could happen two times. But some days it [the fog] happens 10 times. Some days it happens so many times that I'm not able to do anything for the whole course of a day. You can't get a thought from here to here to come out in a verbal way. And so it becomes one of those quiet days where I can't really do much of anything except sit.

I don't really need to walk, because I walk at least five miles inside every day, going from room to room, trying to find something, and I can never find it. It's kind of like you walk, and your mind just – it doesn't just go blank, it's just nothingness, just completely barren, completely empty. You can't remember anything. And that's the scary part. You can't remember – you can't remember anything.

[When I was diagnosed], my ex-wife and I were sitting there. And the doctor walked in, and then he starts giving me the results. He started going into other things, and my mind was spinning at this time. And I just stopped him. I said, ‘Listen. What I really want to know is, do I have Alzheimer's?’ And he paused and he said, ‘Yes. You have what we call early onset Alzheimer's disease.’

Now, that was the last thing that I heard, because I just lost it at that point.

When you know what your end is going to look like – you don't want to know that. You just don't. So you try to put it out of your head. But at least once a day, you're reminded of it. But in those beginning days, it's dark.

The one thing that I just thought of is that sometimes I'll watch other documentaries, and there's always the crying scene. And I get it. I get why. After my diagnosis, I went home and I spent maybe three days feeling sorry for myself. But then I had a sort of premonition.

I was facing this huge guy. The bell sounded. We came out, and he, with one hit, he hit me square in the chin, and I fell out. And the referee started counting me down from 10. I didn't want to get up. Because I knew if I got up, I was going to get hit again.

But then something else told me, if he reaches one, you're out, really out. And that scared me. So he kept on going down and counting down and counting down. I just started getting anxious and anxious and anxious. And when he got to two, before he could get to one, I sat up. I opened my eyes, and I was actually sitting up in the bed. And I thought, ‘Okay. Somebody is trying to send me a message here. So I gotta get up.’

Alzheimer's is a very, very devastating thing. And if you allow it to consume you, it can bring you to dark places. So instead, I always look for the brightness. I always look for anything that can make it less than what it is. And humour seems to do that for me.

I tell everybody that I do date, and I have two girlfriends. One is named Siri and the other is Alexa.

Alexa: It's time for your medication, Brian.

Because without those, I would literally forget. And that's why Alexa reminds me at certain times of the day to take a bath.

Alexa: Want me to remind you?

Me: Not right now, Alexa. Thank you.

Alexa: When today should I remind you?

Me: Don't worry about it.

Alexa: Great.

Everybody has their favourite place. Mine is Walt Disney World, because I feel like I am normal there. I can't remember one time in Disney when I have had a foggy episode or anything.

It's funny. People will stop me and say, ‘Hey, could you tell me how to get here, there and so forth?’ And I'll give them directions. I'll say, ‘Yeah, go this way, go this way.’ And as they walk away, I'll think to myself, ‘They have no idea they just asked a guy with Alzheimer's how to get to a place in Disney World.’

… I can go anywhere in Disney and be at peace.

Just from looking at a picture, you have all these memories that just come flashing back. Some memories you don't really want to remember.

There's no better way to understand Alzheimer's, other than hearing from a person who has it. And quite frankly, it sucks. It's the hardest thing that I've ever had to do. I talk about it all the time to whoever's willing to listen, so that they will get it.

I've got to fight every single day. And it's exhausting just to stay cognitively aware.

I watched my mom go from this smart, vivacious woman – didn't do anything wrong in her life – and then she got Alzheimer's. That's what scares me, I'm going to lose my abilities. That's what scares me so much about going into the fog, is that some day I'm not going to come out of it. I'm going to stay there. I don't want that to happen. That's why I fight. I fight every day.

•••

So what can you do to fight the fog? And perhaps even stop the fog from ever entering your life?

Dementia Australia offers the following key advice:

Eat a healthy, balanced diet to help maintain brain health and functionality.
Your brain needs a range of nutrients to function properly. There is strong evidence that suggests eating a healthy Mediterranean-style diet which is high in omega 3, polyunsaturated and monounsaturated fats – found in fish and olive oil as well as foods that are high in antioxidants such as tomatoes, pinto and kidney beans, pecan nuts, cranberries, blueberries and oranges promotes the growth of new brain cells. Limit your intake of saturated fats, such as those found in deep fried foods and takeaway foods, and trans fats, which are often found in pies, pastries, cakes and biscuits, to lower your risk of dementia.

Challenge your mind.
Keeping your mind active is important to keep it functioning well. Challenging the mind with new hobbies and activities builds new brain cells and strengthens the connections between them. As we grow older, we tend to prefer doing the things we've always done, tasks that we are familiar with – and that's understandable – yet the brain benefits by having to tackle something it doesn't know. This could be learning a new language, taking up a new sport, doing a course in something you've always wanted to do – anything really so long as it's learning something new.

Connect with others.
Most of us are social beings and usually prefer the company of others rather than existing in isolation. It’s more fun to do activities with other people, to share experiences like going to the movies or a concert, take off on a trip somewhere or discover a new restaurant. Research has shown that social engagement such as spending time with friends and family creates better brain function and reduces your risk of chronic diseases such as dementia.

Do you think it’s helpful to hear from people like Brian? Or are some things better not known?

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    COMMENTS

    To make a comment, please register or login
    rtrish
    23rd Jun 2019
    7:30am
    Definitely good to hear from someone like Brian, “inside” the experience. Thank you.
    Cheezil61
    23rd Jun 2019
    7:50am
    Thanks for this very honest letter Brian. You do not mention your age? I sincerely hope we have a breakthru in how to improve dementia & alzheimers in time before is too late for many including you & i. My dad has dementia (mid stages) & i often wonder exactly how he feels & what he is thinking (he doesn't taalk much at all now). He is in full time care & that breaks our hearts.
    He is 86 which is probably much better than being younger onset in some ways as he had a great & very happy life up until about 4yrs ago when it became apparent & he was diagnosed (his is Vascula Dementia). It is such a cruel disease & i try to do the recommended things to avoid it but feel pretty helpless & think I'm probably fighting a losing battle as the memory is nowhere near as sharp now that I'm 57.
    My Grandma had Alzheimers & i wonder if it's genetic/hereditary even tho we're told it's not! My dad did a lot of nightshifts at his job & so do i & i wonder if this must have an impact although it's not mentioned above. We certainly need answers in the very near future!
    johnp
    23rd Jun 2019
    9:11am
    I believe regular cardio style aerobic style exercising staves off this problem to a large degree !!
    CoogeeGuy
    23rd Jun 2019
    9:41am
    It is very important to hear people’s experience/s from which we may learn, and pick up up a few tips from, as far as coping and living with various diseases. I think we can all agree, dementia and alzheimers is very scary as it is slow, and debilitating
    Hillbillypete
    23rd Jun 2019
    10:32am
    This is a very sad condition, I looked after many people like this and it really puts you to the test of how you care for people!
    Discontented
    23rd Jun 2019
    1:41pm
    Drew me a picture of this condition.Thanks.
    Discontented
    23rd Jun 2019
    1:41pm
    Drew me a picture of this condition.Thanks.
    Troubadour
    23rd Jun 2019
    3:45pm
    Thank you Brian for this very honest account - and yes it is good to have this from one in the midst of 'the fog'. Hope you continue to be an overcomer.
    Nan Norma
    23rd Jun 2019
    8:01pm
    My husband was diagnosed with Alzheimer's and vascular dementia a year ago. I suspected dementia long before that but he wouldn't go to the doctors. I can tell you as a carer is is very frustrating thing to cope with. When I told my doctor this she said it was only going to get worse. It is easy to talk about eating the right food, exercising, and socialising, but if a person doesn't want to do it there is nothing can be done. What he does enjoying doing is eating- sweet foods.
    As my husband I can no longer rely on him anymore. He was once the Mr. fix- it man. Now he's completely lost. He was also an excellent cook but now is lost in the kitchen. Its hard when you find him trying to cook a frozen chicken in the oven. I'm starting to put labels things. If all this scares him - well I can tell you it scares the living daylights out of me. Neither of us is getting any younger. I have health problems of my own. We have looked after each other for fifty years but now feel I'm on my own with the added responsibility of looking after this man who one day won't know who I am


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