Opinion:Alzheimer's changed everything for my family, seemingly in an instant

I’m often asked why I got involved in politics. I’d like to say to bring justice to the land, and that’s partly true. But the main reason; I thought it’d be a good way to meet girls. And I was right! I met my wife, Jenna, that way. And hats off to you, politics. We celebrated our 50th anniversary at Roy’s in August of 2021. That’s a restaurant on Ka’anapali Beach in Maui.

We observed our 51st a year later at Arbor Springs, a facility dedicated to the care of people with late-stage Alzheimer’s disease. Jenna was diagnosed with Alzheimer’s in February of 2022; by mid-June, she could not recognize me.

I had lost 25 pounds and exhibited Parkinson’s-like symptoms. Jenna had Alzheimer’s, but we were both being devoured by it.

What a difference a year makes.

There are currently over 6 million Americans suffering from Alzheimer’s disease. For every Alzheimer’s person there are generally more than one caregiver. It’s estimated there are around 12 million of them. Geriatricians call them “Patient Number Two.”

The physical, emotional and mental strains on them are so profound, vast numbers suffer health challenges themselves. PTSD, depression, cardiac issues, stress related illnesses; you get the idea. The impact and stress on health care systems are real.

People ask me, didn’t you see it coming? Answer: No, I did not. The medical community tells us the Alzheimer’s victim does see it, though. Many times, years before loved ones ever notice.  But, add to that, humans inclination toward denial and, it seems to hit like a freight train. Had we taken note earlier, things could have gone differently.

The diagnosis

On Feb. 4, 2022, Dr. Robert Bender called me with the results of Jenna’s brain scan. He’d already administered a written exam. One reason we were in front of Dr. Bender was Jenna had been having trouble “hearing.”

I learned that hearing loss can be a major contributor to dementia. People with difficulty “hearing,” or better said: misinterpreting language masquerading as hearing loss, tend to socially withdraw.  When we isolate, we tend to lose social interaction with others. This can hasten dementia.

Now, Jenna had suddenly found difficulty finding her way home.

He called me at 7:48 a.m. on that cold February morning.  He said, “Sorry Bob, this is going to be a gut punch. Jenna has Alzheimer’s. There’s really no doubt about it.” He rambled on about the deterioration of brain cells in the hippocampus and frontal lobe, memory and mapping. I don’t remember what all. All I knew was, by 7:49 it was all over.

All the plans we’d had about our years ahead, the planning and saving, the night shifts at Yellow and Roadway, the various election campaigns, her work in insurance and jobs at the Iowa Legislature; in just 60 seconds, it all evaporated.

Care providers have a very tough time with this.  It’s a tough pill to swallow, but swallow it we must. Or we cannot move on.

The doctor prescribed memantine, Duapezil, probably along with Rivastigmine, the most commonly prescribed drugs in Alzheimer’s land. These meds don’t purport to cure Alzheimer’s disease, they don’t even claim to make marginal improvements. But they do hold the promise of holding the disease at bay so the symptoms don’t worsen.

In Mid-March, my son Kevin and I met with Dr. Bender. He suggested we prepare for Plan A, Plan B and Plan C. Plan A was keeping Jenna in the home for as long as possible. I imagined this would go on for four or five years. Plan B was in-home care, and Plan C was long term care at a facility specializing in late-stage Alzheimer’s.

What 'moderate' really meant, for her and for me

Jenna diagnosed with a “moderate” affliction. This word presents as reasonable … understandable. For the Alzheimer’s person, it is not what that word means.

Most clinicians observe three stages of Alzheimer’s. Mild, moderate, and severe. Moderate affliction, I have learned, generally signifies a “point of no return.” It does not respond particularly well to the meds or anything else. It is not reasonable or understandable. It is a dark place.

My friends said, "Bob, this will be the toughest thing you’ve ever done." I scoffed. I solve problems. I don’t run from them … especially when it’s someone I’ve loved for 50 years! No way, I thought, not me. Thousands of care providers respond likewise.

By May, I was overwhelmed. The disease ramped up aggressively, I felt like I had both hands in a dike holding back an ocean of despair and horror. On my side of the crumbling dike, it was all fear and, frankly, panic. I wasn’t eating properly, not working out. I was isolating.

All, the opposite of what I should’ve been doing. My friend, EJ Giovannetti, even staged a one-man intervention. On Jan. 1 of 2022, I weighed 205 pounds. By May, I weighed 180. My right hand had begun to shake so badly people thought I had Parkinson’s. EJ was right. I had become Patient Number Two.

Jenna would wake in the middle of the night and have bizarre episodes.  Behaviors this beautiful, funny, smart woman would never have done even weeks earlier. I would get one behavior accommodated and the disease would unleash another three or four that I’d never seen before. I was no match for this.

Kevin and I began trying to implement Plan B and Plan C simultaneously. My four or five years of care had become four or five months.

The miracles of friends and family, and Jenna

I will say to anyone beginning this terrible journey as care provider and loved one: This will test your faith.

For me, it has. My prayers for a miracle seemed to be useless thought balloons lifting no further than the air rushing under the blades of the ceiling fan in my bedroom.

But only until I saw the miracle of friends and family rallying around us. People who, as far back as the 1980s, had laid foundations that have come into play in the 2020s, in miraculous ways. I am grateful for those true miracles.

A bed unexpectedly opened at Arbor Springs in West Des Moines in late June. My beautiful Jenna moved there that month, leaving our home for the last time, never to return. She is getting terrific care, and I am grateful for that, too.

Could it have gone differently? People who have a “mild” affliction can, at that stage, forestall the advance of the disease for years. They can do this by eating healthy, social interaction, learning new things and exercising. And people with a “mild” diagnosis can live fairly normal lives. They can travel, go out to eat, attend gatherings and many other activities that make life fun.

We all know how Alzheimer’s ends. There is no cure. Someday, though, we will meet world’s first survivor of Alzheimer’s disease. They will be healed and will return to their friends and family whole and healthy. What a miracle that day will be for humankind!

Jenna will not be that person. My family will not be that family.

Not today. Not for us.

But I met a great girl..

Proof, believe me, that miracles can happen.

Robert Brownell is a Polk County supervisor.

Report details how Alzheimer's affects Iowa families

An annual report released by the Alzheimer's Association last week estimated that there were 98,000 family caregivers for dementia patients in Iowa in 2022.

CAREGIVERS: Those caregivers provided 125 million hours of care, time valued at over $2 billion, according to the report. Caregivers themselves face challenges; most have at least one chronic condition, and many report depression and high emotional and physical stress from caregiving, the report said.

WORKER SHORTAGE: The United States needs more than 1.2 million new direct care workers by the end of the decade, the report said.

SUPPORT: The Alzheimer's Association operates a 24-hour help line at 800-272-3900.

This article originally appeared on Des Moines Register: Opinion: How Alzheimer's changed everything for my family