Friday, March 22, 2013

Caregiving Can Shave Years Off Someone’s Life


Please remember the caregivers who are in your life. They need your gratitude and more importantly your support and your help. Don't sit back and let one person carry an enormous burden.

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By Nancy Wurtzel
Alzheimer's Reading Room


Alone
Evelyn, one of my dad's older sisters, was a short, stout woman with a big voice and a formidable presence. She was also a world-class complainer. Long before I was born, someone in the family gave Evelyn the unlikely nickname, "Auntie Honey.” Perhaps because she was far from sweet, the nickname stuck.

As a child, I remember Auntie Honey harping constantly about almost everything. She bemoaned the weather, her husband, the neighbors and her never-ending quest to find comfortable shoes.

However, Auntie Honey’s most frequent complaints were centered on her mother -- my grandmother -- a sweet, slight woman who had lost her mind and didn't know where she had left it.
"She can't remember a damn thing and it's driving me crazy," Auntie Honey would rave.
Since Auntie Honey had no children and lived in a house just down a small hill from Grandma, the caregiving duties fell squarely on her middle-aged shoulders. I'm sure it was never discussed, but simply assumed she would be the one to care for her aging mother.

Indeed, Grandma needed a great deal of care. The diagnosis by a small-town doctor was senility -- a word that both intrigued and repelled me. I had no idea what it meant, but I understood being senile had made my Grandmother forgetful. In fact, so forgetful she had no idea the day, month or year or even the names of her own children and grandchildren.

Grandma really had no use for the present and lived in a sort of mild-mannered, suspended existence.

Yet, Grandma could also be a handful, especially when it came to cooking. The kitchen in her little house became a place of tug-of-war between Auntie Honey and Grandma. You see, if there was anything in the house Grandma could possibly cook, she would.

Left alone with a 10 lb. sack of potatoes, Grandma would cut them up lickety-split and soon have an industrial-size potato casserole baking in her oven. If a kindly neighbor brought her cold chicken salad made with mayonnaise, Grandma might confuse it for soup. Hours later, Auntie Honey would find the salad boiling away on the back burner of Grandma's big white stove.

Members of our family simply chuckled at what they considered Grandma's eccentricities. After all, her behavior was harmless, and Auntie Honey was taking care of her.

Auntie Honey did indeed look after Grandma, but she made certain everyone knew about her caregiving duties. In a loud voice and with gusto she would list her litany of duties: breakfast, shopping, dinner, housekeeping, personal care, lunch, washing and ironing, doctor visits, dinner and finally bed.

The rant would usually end with, "She's going to out-live me!"

Auntie Honey's five siblings all busy with spouses, children and work, had absolutely no idea how difficult it was to care for someone with dementia. And, I venture they did not want to know. It was simply easier to let their childless sister handle the burden.

The years passed and my grandmother needed more and more care, which was mainly done by Auntie Honey. Finally, little Grandma died quietly in her sleep at age 89 – more than a decade after dementia has stolen her mind.

Nine months later, Auntie Honey, only 65 years old, was dead of a heart attack.

Now that I'm a caregiver, I have an understanding of what Auntie Honey faced all those years ago.

She had little help or support for her efforts. Not much was even understood about "senility," as it was called back then, and caregivers were often overwhelmed and had nowhere to turn.

Sometimes, families were embarrassed and didn't want others to know their family was dealing with dementia.

Today, we know the chronic stress of caregiving can shave years from someone's life. I've no doubt that this is exactly what happened to Auntie Honey. She coped as best she could and vented by complaining loudly to anyone within earshot. It was Auntie Honey's dysfunctional way of letting people know the toll it was taking on her.

When I think of Auntie Honey, I feel sad. Sad that her quality of life and the length of her life were so affected by my grandmother's dementia.

Yet, remembering Auntie Honey also makes me feel determined. Determined to shine a spotlight on this horrible disease. Determined not to become a world-class complainer, isolated and bitter. Determined not to allow dementia to shave years from my own life.

Please remember the caregivers who are in your life. They need your gratitude and more importantly your support and your help. Don't sit back and let one person carry an enormous burden. We all need to participate when a loved one has dementia.
Nancy Wurtzel
Nancy Wurtzel writes Dating Dementia -- a slightly twisted and humorous blog -- about making big changes at midlife. Read about Nancy's journey through divorce, restarting a career, empty nest challenges, moving home, baby boomer issues and caring for an aging parent with Alzheimer’s disease. Visit Dating Dementia.
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