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Lonna Whiting, Published December 15 2013

My Demented Mother: Change has to happen now to save generations

The last meal my mother made for me was macaroni and cheese with tuna. It took her five minutes to measure the water correctly and diligent supervision on my part to make sure the pot wouldn’t boil over.

Less than a year ago she was a longtime day care provider who cooked macaroni and cheese by memory, all while soothing a baby and planning afternoon playtime.

Today, she needs help showering and sometimes tries to put socks on over her shoes. She is obsessed with lip balm, much like a toddler with a pacifier. Before she moved in with us, she often called 12 times in one hour to ask the same question.

My mother has dementia, “not otherwise specified,” meaning the best diagnosis neurologists at Mayo Clinic had was: “atypical neurodegenerative disease.” She’s 61.

Every day I watch my mother sink deeper into her illness. Her once vibrant cerulean blue eyes are like two dying stars fading into themselves. It’s a helpless demise that, unlike other “top killers,” has no treatment or cure. People with dementia don’t become “fighters” or “survivors.” They get “victim” status and succumb over months, years, even decades.

Unfortunately, while families like mine have to watch a loved one slowly disappear, we’re hit with a slap on the other cheek since the path toward finding efficacious treatments is a mere pipe dream. Cancer research garners $6 billion in funding, while Alzheimer’s and related dementias get a measly $480 million – even though more than 5 million Americans live with the disease (a figure that’s expected to swell at a terrifying rate in the coming decades).

Unless something happens now, this Boomer-defining epidemic is going to decimate financial stability and crush the souls of millions of American families. It certainly has ours.

For example, despite the best intentions of the Compassionate Care Allowance Act, which protects disability rights for early onset victims, I’ve struggled for more than eight months and counting to get my mom on Medicaid.

Meanwhile, I’ve spent every penny we have. We sold her house for a fraction of what it was worth. Her health insurance was terminated. We have nothing, which clearly indicates that federal, state and (especially) local programs aimed to help people like my mom fail – miserably.

My mom turns 62 in March. By summer, I expect she will no longer recognize us. Soon, she will lose her ability to use the bathroom independently.

But for now, despite the sadness and helplessness, I will hug my mom and tuck her into bed at night. I will make her smile. I will answer the same question for her as many times as she needs. I will honor her by raising awareness and helping to change the course of this disease so that other families have a better dementia experience. It’s the least I can do for her, for myself, and maybe someday, for you.

Lonna Whiting is a copywriter at Flint Group in Fargo. She can be reached at lonnawhiting@gmail.com.