Welcome to Unconfuse Me. I’m Bill Gates.
You probably know my dad
also died of Alzheimer’s,
but it wasn’t until his early eighties
that it was really slowing him down.
He lived until 93, so he had about 13 years.
I was super lucky
that I could afford these professional caregivers
along with the family.
We got to be so close to those people.
My dad never knew their name but he liked them.
He lived with them.
So that kind of made it a shared experience.
Early in my dad’s Alzheimer’s,
there’s one funny thing,
which is that he was on the board of Costco,
which is a super successful retailer
and a very important job.
I said to my dad,
“You should get off of this board, Dad.”
And he said,
“Why? I’m really good on this board.”
And I said “You know, Dad,
you have an unblemished reputation,
so you’re probably not up to it.”
And he said, “I think I’m up to it.”
And then he thought about it
and I told him again,
and then he called up the guys on the Costco board,
and he says, “Look, I think I’m doing a great job,
but my son says I should quit,
and sometimes my son is right. So I’m quitting.”
You have to laugh about some of the milestones.
Definitely, yeah.
It’s a cruel disease but I think a lot of people
have those types of moments,
where it was accidentally a funny thing
you can look back on.
We did a virtual event for caregivers.
One of the panels was about humor,
and bringing humor to caregiving.
There were some very funny things.
People have truly outrageous stories
and it was very cathartic.
It was a group of people all crying
and laughing hysterically at the same time,
which is actually very emotionally relieving
for people, I think, to be able to access
both those emotions, and it is just funny sometimes,
because of how absurd it is,
and sometimes all you can do is laugh.
Comedy does have an amazing ability
to support any idea if you are good with it.
And there are very few things
that you really can’t surround with comedy,
if you aren’t sensitive
and really aware of what you’re doing.
Over the years, people really like
that we’re able to talk very frankly and openly
about Alzheimer’s and also make you laugh a lot.
It still has some stigma.
There’s both lack of awareness and stigma.
In my dad’s case, they never really, until pretty late,
officially said it was Alzheimer’s,
although it had the unique characteristics,
because sadly, since there really isn’t much
in the way of treatment,
actually making the formal diagnosis
isn’t like you magically say,
“Now take this antibiotic
and your Alzheimer’s will get cured.”
In the next decade, I’m pretty hopeful
there’s a whole pipeline of new drugs
that should make a difference.
But I’m surprised at the stigma
and how strong it is.
Honestly, the stigma has put us in the place
we’re in today instead of further along,
because people were afraid to talk about it.
They’re still afraid to talk about it.
They don’t want to share their stories
because, yes, there are some funny ones,
but the reality is it is a dark disease,
and it is painful
to watch your loved one go through it.
My grandfather, my mom’s father, had it.
Then, a few years after he passed away,
her mother started showing signs of dementia.
She was sort of
between Alzheimer’s, Parkinson’s, etc.,
and then when my mom started showing signs
only five years after my grandmother had died,
we knew, and she knew.
But she didn’t want us to tell anyone,
because she felt this shame
and this sadness for herself
and this fear of what was going to happen.
She was a teacher for 35 years.
She was someone who used her brain
and was in control,
and commanded a classroom of six-year-olds.
That’s not easy. What we faced early on
was that keeping the secret became heavier
and a harder burden to bear
than just telling the truth,
and sharing it, and telling my friends,
“This is what I’m carrying.
This is what I’m going through.”
Once I did that, people showed up for it,
and I felt supported.
It is this fear of aging,
this fear of death that humans carry with them,
and the loss of control.
Someone who has dementia and Alzheimer’s,
they lose all control of everything,
and I think that is incredibly scary,
but it is a reality.
Part of what we’ve tried to do is
talk about it honestly and openly
and encourage other people to do the same,
because when we share our stories,
understanding happens and learning happens,
and that’s how we progress.
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