Living with and loving someone who suffers from Alzheimer's
By Judith Fox
- The statistics regarding Alzheimer's are terrifying and challenging. But until you, or someone you love, is diagnosed with Alzheimer's they are still just flat numbers in black and white. When the disease becomes personal, though, your world is upended and your life is changed; those statistics then become three dimensional and all too real.
- I think it's pretty safe to say that we all fear Alzheimer's. And with good reason. Please imagine, for a minute, that you've just walked into your living room and, when you get there, you have no idea what you're doing there. You've experienced that, right? But if you have AD that same moment might be experienced very differently.
In Ed's case, he's walked into our living room and forgotten why he went there, but he's also failed to recognize that he was in our living room. In the heart of our home, he's not known that the walls that surrounded him were ours. There were times in our living room when Ed saw people sitting on our sofa, clinging to our ceilings, crawling out of our floors.
He's moved into another reality from the one you and I experience. And, contrary to what some people assume, he's often still aware of how much he's forgotten, how much of his world he's lost.
- What is it like to live with AD? For starters, it breaks your heart. It took our lives, formerly expansive, and made them narrow.
It took my independent husband, a university president, surgeon, pilot, and athlete and made him dependent and anxious. It took me, a retired CEO, photographer and writer and placed me on a decade long sabbatical during which I became a 24/7 protector and caregiver; my days were lazar focused on those things I needed to do to keep Ed safe and make his life easier.
I chose to be Ed's sole caregiver for the first eight years after his diagnosis. I chose not to have a day to myself during those eight years. I chose to live in a world circumscribed by AD. But I'm fortunate, I had the freedom to make those choices. And when I realized that I couldn't keep caring for Ed without help, I had the option of hiring a caregiver.
What do people do who don't have options? As difficult as my life had become, I would get mine back. Ed never will. Bit by bit, task by task, memory by memory, function by function, Ed is losing his life and his world. And I'm losing my best friend and the man that I love.
- AD caregivers are reminded daily that there are many realities in this world, and that we don't hold the only truth. When dealing with Alzheimer's the alternate realities may look like something out of "Alice's Wonderland". The first time Ed had a hallucination, I went down the rabbit hole with him.
Fortunately, his early hallucinations were extremely pleasant and I was always included. We spent lovely hours together at parties, and a few times we went sailing or picnicking near the water. We had a great time -- it didn't matter that we were in bed when Ed thought we were on the beach. It didn't matter that the other party-goers didn't exist.
Those hours together were fun, and we shared them. But Ed's hallucinations didn't stay pleasant, they eventually frightened him and made him anxious. And over time, his level of functioning declined to the point where it was increasingly difficult for me to manage his care at home. By this time, I had added a second caregiver -- but I was in charge of his care at night when his hallucinations were extremely challenging. Neither one of us was getting much sleep.
Then one of Ed's caregivers told us she was pregnant and would be leaving. Ed's other caregiver was suffering from depression and needed care herself. We were in the middle of a perfect storm.
- Home is an emotional, as well as a literal, place. Most of us think of our home as a shelter that keeps us safe—a space that's familiar and comfortable. Ed is always wanting to "go home" but he can't; the home he wants doesn't exist for him anymore. Ed will never again feel at home or at ease.
When I asked him recently where he wants to go when he says "I want to go home" he answered "I want to go where I was when I was well." This is the stuff that breaks my heart.
- Having said all that, living with Alzheimer's is not without its gifts. I've discovered patience I didn't know I had, I've learned to adapt to changing and challenging situations that have no basis in the logic world I thought I knew and there's the gift of laughter -- thank goodness for the laughs, which can jump between the Marx Brothers moments and the deliberate wit Ed still loves to deploy.
Judith Fox has had two careers: one as an artist and one as an entrepreneur. After working as a photographer, writer and business executive in New York, Fox started a service company in Virginia that expanded in size and reputation and was eventually purchased by a New York Stock Exchange firm.
After selling her company, she devoted herself full-time to photography. Fox's award-winning photographs have been in solo and group museum and gallery shows from New York to California; and she recently returned from London, where she had a solo gallery show.
Her photographs are in the permanent collections of the Los Angeles County Museum of Art (LACMA), the Museum of Photographic Arts (MOPA) and the Harry Ransom Center in Austin, as well as private and corporate collections throughout the United States and Europe.
Since her book, I Still Do: Loving and Living with Alzheimer's was released, Judith has been speaking around the world as an advocate for Alzheimer's caregivers and patients. I Still Do was selected one of the best photography books of 2009 by Photo-eye Magazine.
Judith lives and works in southern California.
For more information or to see her work, go to www.judithfox.com
Click here to read an article about Judith on 'The Online Photographer.'