When Alzheimer’s Comes Knocking: The Journey into Alz World
My husband, Bob, first stated showing signs of Alzheimer’s disease in the year 2000 when I almost died of a strangulated intestine. That trauma changed our lives forever.
Suddenly my protector, my white knight, my business partner, my soul mate, my best friend changed in a way that alerted our friends that something was seriously wrong.
The competent Bob they’d always known crumpled before their eyes, unable to even dial a phone while I lay on the brink of death. Over the next months, I healed from the emergency surgery, but Bob did not.
A Dose of Reality
In those months, it was apparent that something long-term was wrong and because there was a strong history of Alzheimer’s in his family, we had Bob tested. The man evaluating the test said, “I hope my brain will be in as good a shape as yours, Bob, when I’m your age.”
This was just what we wanted to hear. Relief cooled our anxiety and we smiled as we gathered our things. Bob was helping me on with my coat when the man said, almost as an afterthought, “It is possible that Bob might have Mild Cognitive Impairment, or MCI, but that would require another $500 test.”
We didn’t follow up.
The Veil of Denial
That was the beginning of our 14-year journey into Alz World, as I call it. With our heads firmly in the sand of denial we led our dream life as we always had at home in Bali, traveling and running our carving business – until that sand was blown away by reality and we had to face the fact that Bob had Alzheimer’s.
The veil of denial had protected us for a period but when reality left us exposed to the hardships of Alz World, we found we were ill prepared.
I slid into the role of Bob’s primary caregiver while taking over more of our business as he could do less. I learned, often the hard way, how to enter his world and give him the best life possible until he passed away in March 2014.
Piece by Piece
Last year I did a TEDx talk on being a caregiver and how I survived using tricks I’d learned along the way. I wanted to share some of the knowledge I’d gleaned with others in the same position.
I also published a book, Piece by Piece: Love in the Land of Alzheimer’s. This is a story about the pieces of our relationship, our business and our life that fell by the wayside as Bob deteriorated. It’s a story of lessons learned to cope in his world and keep him safe. The book is written openly and honestly to help other caregivers understand that what they’re experiencing is normal in their role. But above all this is a story about deep love.
I needed support and inspiration from other caregiver’s stories when I was in the thick of Alz World and now I want to give back to those struggling to do this emotionally and physically draining job.
There are over 15 million caregivers in America alone and that’s just for dementia. Many other chronic illnesses require family caregivers as well, like my friend in Hawaii who became a full-time caregiver for her adult son after he survived a tropical disease that left him brain damaged and unable to live on his own.
Woman Take on More of the Burden of Caregiving
The other day my sister wrote in our daily email correspondence that she’d been in the library and noticed another book about a husband taking care of his wife with Alzheimer’s.
She wrote, ‘I can’t think of a single movie or book about a wife taking care of her Alz husband – they’re always about the man taking care of the woman. In our culture, women are assigned the role of caregiver. When a man takes on this role, it’s news! It’s heroic! And therefore interesting! When a woman takes care of an ailing family member, it’s expected, not news, and so what.’
According to the Family Caregiver Alliance, women make up 66% of family caregivers. They write that while men do give assistance, female caregivers might spend as much as 50% more time providing care than their male counterparts.
This taxing work challenges us down to our core. A study found that female caregivers suffer anxiety or depression six times more than non-caregivers. And a large percentage of caregivers die before the person they are caring for, simply because the stress is never-ending.
In this first post on Sixty and Me I wanted to introduce myself with some background and let you know some of the topics I’ll be covering in the future: surviving repeated questioning, surviving guilt, finding humor in Alz World, caring for the caregiver, the magic of light and contrasting colors, learning to lie, plus many more.
My blog, Alz World, addresses topics as they were happening in my world when Bob was still alive.
What difficulties do you face as a caregiver of an Alzheimer patient? What topics are you interested in learning more about? What questions do you have? Please share with me in the comments.
Susan Tereba, an artist, jewelry designer and writer, has lived in Bali for 27 years. She had 14 years of experience as the primary caregiver for her husband, who had Alzheimer’s. Susan now writes and speaks with the goal of inspiring other caregivers for those with chronic illnesses. Please visit her website for more details.