“A free, really high quality photo-essay magazine. Fabulous!”Stephen Fry. British actor, writer and film maker
by Judith Fox
In 2001, three years after my husband, Edmund Ackell, was diagnosed with Alzheimer’s, I started the photography series that evolved into the book I Still Do: Loving and Living with Alzheimer’s. The work would eventually be shown in gallery and museum exhibitions around the world.The intimate photographs of my husband are a celebration of the older male as a beautiful, sensual and desirable figure; they are also a tribute to a dignified man as he fought a horrific disease with grace and humor. Over time, I saw this body of work as an opportunity to create change through art; by putting Ed’s face in front of the statistics, I Still Do increases awareness—on a visceral and emotional level—of the impact of Alzheimer’s on the sufferer and the caregiver. The images and text deal with love, commitment, trust, aging, mortality and hope.
I Still Do was published by PowerHouse Books in 2009 and was selected as one of photo-eye Magazine’s best photography books of 2009.
These are some of the things my husband used to do: fly a plan, perform surgery…head a university and medical centers…hit four holes-in-one…These are some of the things my husband can’t do anymore: find his way to and from an unfamiliar bathroom, work the coffee maker…or remember something I told him two minutes ago.
For several years, Ed didn’t want people to know he had Alzheimer’s. He wanted to be treated with respect and he didn’t want people to think he was “crazy.”There are many incorrect assumptions about the disease—some held by the people who have it.
….When he’s concentrating on golf, he’s not thinking about Alzheimer’s.
…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.
I got our cat, Honey, thinking she would be good for Ed. We’re both madly in love with her, but she and Ed have a special bond.
I told Ed that some of the photographs I took of him saw straight through to his soul and asked if he minded being that exposed. He said, “No. You can show my soul; just don’t show my penis.” So that’s our agreement.
Alzheimer’s is a disease that affects entire families. Some join togetherto support the patient and care partner. Some uncouple and fall apart. All are tested.
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 the familiar.
Alzheimer’s is not without the occasional gift: most patients keep their humor and wit even as the disease progresses. Laughter allows Ed to feel normal and it deflects attention away from the fact that he might not be able to answer the question…
Alzheimer’s taunts and jeers. Yanks our chains. Unveils the person we married and then replaces him with someone who doesn’t know our name.How are we supposed to deal with that?
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?
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.
Ed and I enjoy the moments. But I’m in charge of storing and sharing the memories.
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.
Sometimes 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.