Transcriber: Yun Hui Lee Reviewer: David DeRuwe
Once I was sitting in a room with a group of people,
and a gentleman whose name was actually Ted began to talk about his life.
He said that he often felt like he had fallen into a pit.
He could see everyone outside of the pit,
but he just couldn't figure out how to get back to them.
He talked about being alone, confused, and left behind.
His description of the pit sounded like a very frightening place to be.
What was interesting was that many people in the room that day agreed with Ted
and said that they often felt like they had fallen into a pit too.
Can you imagine a whole room full of people describing their life that way?
I often think about Ted's illustration from a slightly different perspective.
He talked about himself,
but then he talked about all these people being outside of the pit.
And I’ve often wondered who they were and if they could see Ted.
Have you ever felt like the person walking by the pit?
I think most of us would say, “Absolutely not.
I would never be the person who is walking by someone in need.”
But I have to take this moment to confess something to all of you:
I have at times been that person,
and unfortunately, I think many of us have.
You see, Ted and everyone in the room that day had Alzheimer’s disease,
and they were describing a similar emotion.
Living with Alzheimer’s or another form of dementia is a very lonely experience.
We probably all know someone who's lived with dementia.
I've worked in this field for 35 years
and have known many family members with dementia,
including both of my parents.
It’s a lonely experience,
and I’ve seen the loneliness that can come from the disease itself.
But I’ve also seen the loneliness
that comes from, as Ted would say, the people who walk by.
Maybe they’re scared or uncertain, so they don’t know what to do,
and they choose to keep a distance.
Or maybe they feel like it doesn’t really matter if I interact
because the person might not remember if I do.
For 18 years, through the Rush Alzheimer’s Disease Center,
I’ve helped facilitate a large support program called “Without Warning.”
It’s for people who have young-onset Alzheimer’s disease,
so that means under the age of 65 when diagnosed,
and through the group, I have met hundreds of people with Alzheimer’s
and hundreds of family members.
And though they all come from different backgrounds and different life situations,
they all have a similar message:
living with Alzheimer’s is a lonely experience,
and they often don't feel supported by the community around them.
The Reverend Shawna Bowman
was a group facilitator for Without Warning
and is also an artist who would create these beautiful images
based on the conversations from our group.
The first you'd see as being Ted's comment of the pit,
but families also talked about their own sense of loneliness,
saying that as the disease progresses,
their social circles get smaller and smaller
until it’s just them and the person with dementia.
One husband caring for his wife said,
“You know, if my wife had breast cancer, people would be rallying around us.
They’d be creating teams. They’d be checking in, dropping off food.
But with dementia, people just drift by.”
And I think our attitudes about dementia and about people with dementia
can cause us to be those people who drift by.
We have to realize that human connection
is based on so much more than our ability to think and remember.
This might come as a startling realization,
but we are much more than our memories.
We have worth and we have value,
even as our cognitive abilities start to falter.
This image was created from a gentleman named Ron who was sitting in my group,
and he looked out at all the other people in the group that day and he said,
“I love coming here because we’re all in the same boat together.”
And what the image is trying to show
is that on the side where people are grouped together in a community,
the sun is coming out and the waters are a little bit calmer.
And that’s because relationships matter,
and that’s where a need for a national conversation fits in.
We have to realize that there really is an epidemic of loneliness
for people with dementia.
And even though some of that loneliness does come from the disease process,
much of it comes from the world around them.
To be living with dementia or to be caring for someone with dementia
is not a reason to be left alone.
There is a grass roots global initiative that's looking at this exact issue.
I encourage each of you to take a few minutes
and just sign up as a dementia friend online.
It asks everyone who signs up to think about what is one thing
you could do over the next year to support someone with dementia.
Maybe it’s checking in on them, a neighbor, or a family member.
Maybe it's learning about the disease.
Or maybe it’s just being more patient when you’re out and about in the community.
Imagine all the good that could come from our collective actions being put together.
One woman once said in my support group that we have to learn to find
the joys within all the struggles.
And I think for us, finding all the joys within the struggles
really takes stepping out of our own discomfort
and out of our own uncertainty
and figuring out what is value and worth in each person with dementia.
Relating to someone with dementia takes joining them in the moment
and figuring out what brings them joy or peace or contentment.
Maybe it’s sitting and reminiscing together.
Maybe it’s watching a game on TV.
Maybe it’s working in the garden or going for a walk.
Or maybe it’s just sitting and listening to a favorite song together.
We all have to become those people who don’t walk by, but stop.
And as Ted would say, reach through the pit so that no one feels alone.
Thank you.
(Applause)