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Erasing the stigma of dementia

by Carol Bradley Bursack, Editor-in-Chief

My dad came totally demented out of surgery meant to correct the effects of a World War II brain injury. The shock to the family is indescribable. This brilliant, gentle man suddenly had a voice in his head and was so paranoid he thought the hospital nurse was trying to kill him in the shower. Dad lived in his own dementia hell for a full decade. I learned a lot during that time, and often write here on ElderCarelink.com about these issues.

Dad's dementia wasn't the only dementia I coped with. My uncle developed vascular dementia after a stroke. My mother-in-law likely had Alzheimer's, though less was known about the disease at that time, so she was never diagnosed. My mother had "organic brain disease" of unknown origin. Not all dementia present the same symptoms, however many symptoms overlap and people can have more than one type. A common thread, however, is that dementia tends to carry the same stigma as any mental illness.

Dementia: how times have changed, or not

Decades back, if Grandpa was a little dotty in his thinking the family was told he had senile dementia. It was just old age. The family often tried to keep him at home as much as possible so that they needn't be embarrassed by his behavior. This treatment wasn't much different than when they kept a mentally disabled child locked in a room when company came. Disturbing as it is, this treatment was often more from lack of education than lack of love.

Today, when tell-all books, TV shows, and blogs are rampant, one would think that dementia would hardly be something that would embarrass an elder's family and friends. But I found out the hard way that the stigma of mental illness, dementia included, hasn't gone away.

Dealing with my parents' dementia

As an elder care columnist for a newspaper which is published in the city where I grew up, and my parents were well known, I was taken to task by more than one old friend of my folks' for writing publicly about their dementia. I know people read my column because I am "one of them." I am not a doctor. I am not a social worker. I am a person who cared for seven elders over the span of two decades. I am a caregiver. So, how can I help other caregivers if I don't write about my own experiences with caregiving?

Well, my parents' friends thought it was fine if I wrote about Mom's arthritis. I could even write about Dad's dental issues. But their dementia? That was too demeaning.

How dare I write about this man, once in the public eye, wanting me to bring an elephant to Fargo? How dare I write about my mother's repeated phone calls because she forgot she called two minutes before? How dare I write about my dignified uncle, a retired military officer, calling his razor a magazine because of his aphasia caused by vascular dementia?

These things were viewed as demeaning by some of their elderly friends. I do believe some of it was their own fear of having their aging revealed in such a way. However, some of it is the attitude that I was "airing dirty laundry" in a public place. But why should my parents' dementia be considered "dirty laundry"?

Is it betrayal to publicize the dementia of a loved one?

I was helped along the road to writing my book, Minding Our Elders: Caregivers Share Their Personal Stories, by my dad's remark to me during one of his lucid moments after surgery. Dad looked me in the eye and said with perfect clarity, "Do they know what happened to me?" He was referring to the outside world with hand gestures. He wanted people to know. After I wrote my book, which features Dad on the cover, I was able to say in the book's epilogue, "Yes, Dad. Now they do."

That knowledge gave me the courage to write about my loved ones in my newspaper column, and also in many online articles, without feeling I was betraying them. I knew they were educators at heart. I feel strongly that only by making public the fact that educated, intelligent people do get dementia and that it is not a shameful thing to have, can we bring mental illness and the many kinds of dementia out of the proverbial closet.

My loved ones are contributing, even after their deaths, to the welfare of others. Their stories live on to give support to caregivers and shine the light on dementia. Many other brave souls are coming forward with their own or a loved one's story. We are not ashamed.

Dementia is an illness which is hard enough to endure with full support. Trying to handle the caregiving of someone with dementia all alone often leads to isolation for the caregiver and the care receiver.

Resources like ElderCarelink.com continue to educate and support those who need it, no matter what kind of disease the aging process brings. Support is available in the form of practical advice as well as emotions shared by those who have been in your shoes. You can find that here, at least, there is no shame or betrayal associated with dementia.

Here you can find support.