Why are we so ashamed of Dementia?

My father’s mother, just a few months ago, was walking around her house, chatting with me.

It’s hard for me to comprehend what my parents and my aunts and uncles now tell me: that she was weak and very sickly, and that her dementia was making her act out viciously at times.

She, as they call it, “presented” well. I’ve been lucky enough to know both sets of my grandparents, although all were quite old when I was born.

As I aged and began to realize how precious my relationship with them was, I’ve had to watch them become weaker or die, made all the more painful by their collective slip into the abyss of dementia.

Dementia is a nasty thing.

It is, for older people, degenerative, meaning that the changes it causes in the brain cannot be stopped or turned back. It eats away at memories, at independence and, most frighteningly, at self-control.

From what I’ve seen, it can manifest itself in different ways, from simple forgetfulness to grief to extreme anger and violent urges.

My sole surviving grandmother, my mother’s mother, is in the dementia unit of her assisted living facility, which we chose after an extensive search.

Good dementia units are surprisingly hard to find.

She’s had a mixed experience there. While some staff members are wonderful, things have also been stolen from her.

She’s often disturbed by residents of the unit yelling obscenities and acting like children because of their dementia, residents who are often ignored by the staff. With my remaining grandmother, we were lucky — her dementia has made her sweet and very sad at times, not spiteful.

We were not so lucky with my father’s mother. In the last few months of her life, in addition to being forgetful, she also became angrier and far more irritable, putting a strain on her relationship with her family members.

It’s hard to tell how much of this was Grandma herself and how much was her disease. As I said, she presented well.

Even in the end, as we moved her out of her house and into a nursing home, she was close to talking a doctor into not placing her in dementia care, although she’d been repeatedly diagnosed with it.

Her husband, my father’s father, described the dementia unit at their center as a “Motel 6,” with terrible accommodations and terrible care. His apartment in the same facility, on the other hand, is beautiful with a wonderful staff.

Why is it that dementia care is continually pushed aside as if we are ashamed of it?
Is it because dementia is hard to predict and hard to control, even with medication? Is it because it’s often frightening to be around people who seem crazy?

I know this: We need to get our act together. We cannot let parents and grandparents rot alone in cramped dementia units.

We must remember they are still people who have paid their dues in life and deserve nothing but respect and dignity in their final days.

Take it from someone who knows intimately: We cannot ignore dementia.

If not only for our grandparents, let’s set a higher standard for research and care for our parents and, eventually, for ourselves.

­— kelfritz@indiana.edu

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