​All in for Alzheimer’s

By Lonna Whiting

Lonna.Whiting@bcbsnd.com

My mom was diagnosed with dementia at age 61.

Now age 64 and three years into her dementia progression, she is completely dependent on others for daily cares, including bathroom time, bathing and eating, and often communicating.

We know more is coming for mom before “the end,” which is likely years from now. She’ll forget who we are. She’ll forget how to talk, walk and sit upright in a chair.

She’ll forget how to breathe.

She will not survive this.

46 million and growing

As one doctor told me, dementia is “a fate worse than death.” Yet we allow more than 46 million people worldwide to suffer until their last bit of awareness is snuffed out like smoking embers in a slowly dying fire.

Not only is the disease something that affects entire families, but it’s also poised to decimate economies as we begin to see the Baby Boomers need higher levels of care. For example, caring for the average dementia patient costs around $6,000 a month in North Dakota. And depending on care needs, that number can get up to the tens of thousands per month.

Ending the stigma

Historically, families have hidden behind an Alzheimer’s or dementia diagnosis as though it was caused by some character flaw. It is not a glamorous disease that gets much attention because the reality of the disease is not fully understood. Let’s take a brief glimpse at the reality:

• Alzheimer’s disease is not an “old person’s disease.” The first documented case was a 54-year-old woman named Auguste D.
• Dementia is not the same as Alzheimer’s. It is a set of neurodegenerative symptoms that result in brain atrophy. However, dementia progresses in a similar fashion as Alzheimer’s disease.
• Alzheimer’s is not a normal process of aging. It is a disease just like heart disease, diabetes, depression and cancer.
• There is no cure for Alzheimer’s and dementia, and it is the only disease in the top ten causes of death that has no cure or efficacious treatments.
• Alzheimer’s and dementia slowly erases the brain, including one’s memory, self-awareness, the ability to read, write and understand language and surroundings.
• Most Alzheimer’s and dementia patients die of respiratory illnesses because the swallow response goes away, resulting in lung infection and pneumonia.
• While many people say it’s harder on the loved ones to watch the progression, many, many Alzheimer’s patients are fully aware of what’s happening to them.

Help fight North Dakota’s 3rd leading cause of death at Brains on the Plains

Deep in the throes of caring for my dying mother, I often feel hopeless, angry and overcome by grief. But it’s just not in me to hide our family’s experience with others, because it’s through community dialogue that we begin to see progress.

It gives me hope that if I share my story and the truth of the Alzheimer’s experience that other families will speak out and say it’s not OK that there’s no treatments.

It’s not OK to watch a loved one endure this unrelenting dying process for years and sometimes decades.

It’s not OK for us to ignore this secret public health crisis that nobody’s talking about.

But it’s definitely OK to start talking about it. The third annual Brains on the Plains fundraiser will raise money to benefit the Alzheimer’s Association of Minnesota-North Dakota so that we can see progress sooner rather than later.

Coming together unites us and creates more understanding about the urgent need for infrastructure, care plans, funding, treatments and medications that can help those with Alzheimer’s and dementia live with dignity. Support the thousands of North Dakota families who are enduring the Long Goodbye and show them you are here.

You are listening.

IF YOU GO:

Brains on the Plains

Thursday, June 2, 5 p.m. to 7 p.m.

Super Studio, 630 1st Ave. N., Suite D, Fargo (next to Wurst Bier Hall)

Tickets are available at www.brainsontheplains.org or at the door

Questions: Email event founder, Lonna Whiting at lonnawhiting@gmail.com