I Still Do: Loving and Living with Alzheimer’s

Three years into their marriage, Judith Fox’s husband, Dr. Edmund Ackell, was diagnosed with Alzheimer’s disease. Over the next ten years, Fox watched as the man who used to perform surgery, fly planes, and run universities, forgot how to turn on the coffee maker, place a phone call, or remember what his wife had told him two minutes earlier.

A poignant and beautiful portrait of a man with Alzheimer’s as seen through the loving lens and words of his wife and carepartner, I Still Do: Loving and Living with Alzheimer’s puts a human face in front of the statistics, exploring the disease through Fox’s intimate photographs and poetic writing. While the details of I Still Do are personal, this deeply candid story of illness, aging, partnership, and loving is universal.

Use the arrows to read selected excerpts from the book.

Why do family caregivers do what we do?

Is it an instinct to protect?
A willingness to sacrifice for someone we love?
Is it responsibility?
Guilt?
Lack of options?

Or is it, perhaps, an understanding
that we can do no less
and the hope
that someone else would do no less for us?

Alzheimer’s doesn’t announce itself
with an ache, a pain, a limp.
It rolls in like a fog.
It dissipates.
It leaves space for denial.

People with Alzheimer’s often feel worthless.

Worth less.

Sometime’s Ed doesn’t remember that we’re married.
Which is something I can deal with.

He never forgets that he loves me and that I love him.
Which is preferable to remembering that we’re married
and forgetting that we love each other.

Everyone tells me to take care of myself.
Everyone tells me that I need to take more time for myself.
Everyone tells me that if I don’t care of myself,
I won’t be able to properly care for Ed.
I know everyone means well.

But I need help, not advice.

These are some of the things that help me cope:
friends, family, and a support gorup.
My personal favorite, though,
is mint chocolate chip ice cream.

Recently, Ed said to me, “I’m so sorry I’ve done this to you.
I didn’t realize how sick I was and I don’t understand
how you can be so patient.” Then he said
“I don’t know why you didn’t take me by the shoulders,
sit me down and say, “You’ve got a problem and here’s the story.”

I didn’t tell Ed how sick he was because he didn’t want to know.
And I’ll continue to follow his lead.
I’ll try not to tell him more than he wants to know.
Or less.

Ed’s social skills remain undiminished.
He’s courteous, charming, and considerate.
Strangers, even friends, can be fooled into thinking
everything’s hunky-dory. For ten minutes.
Fifteen minutes, tops.

Once Ed and I started living with Alzheimer’s,
we began a trip down a never-ending staircase.
Here and there we’ve found a platform
and rested for a while.
Then there was another step down.
And another.

Right now Ed and I are tumbling feet-over-head.
No platforms in sight.
A nightmare.

Ed’s brain is a jumble of tangles and plaques.
It’s an alternate universe with its own authenticity.
It’s roller coasters and fun-house mirrors.
And rabbit holes.
I’ve stepped through the looking glass and into a world
where logic and reality are reconfigured.
Occasionally, it can be fun.
Often it breaks my heart.
Sometimes, it’s just plain interesting–
a peek into the workings of the brain.

Ed is working very hard to fight his disease.
He attempts to ground himself.
He tries to figure out where he is and goes
from room to room in our home,
looking for familiar.
He strives to organize his thoughts and memories.
It’s a visible struggle and it’s a valiant fight.
But he’s losing, and his pain and anxiety are palpable.

Who thought up the innocent-sounding euphemism “sundowning”
to describe that anxious and erratic early-evening behavior?

Let’s be honest, here.
How about “howling at the moon”?
How about “clawing at the walls”?
How about the “twilight zone”.

“Sundowning”? Please.

What Ed wants most is friends, buddies,
the kind of men who used to gather around him
when he was president of a university
and a hero on the golf course.
What he wants is to sit over a beer with these men
after a game of golf and talk about politics,
business, and sports.

He wants his old life back.

I sleep poorly. Like most Alzheimer’s partners.

When Ed’s awake at night, I’m awake.
And he’s awake often.
So, when he gets up to go to the bathroom,
I’m there to make sure he heads in the right direction.
When he jumps out of bed at three a.m.
because he thinks he has a meeting to go to,
I settle him down.
When he gets up at five a.m.
because he thinks he’s misplaced his wallet,
I’m awake to help him find it.

When I go out-of-town for a week, I sleep for the first three days.

Our stories ground us.
We select them, we edit them,
and we tell them to others
in order to explain ourselves.
Ed is losing his story.