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Stolen Memories: Doctor learns to accept unknowns after Alzheimer’s diagnosis

  • Paul Ernsting reflects on his future while in his Dover home late last year. Ernsting, a primary care doctor, was suddenly diagnosed with Alzheimer’s disease at age 52. GEOFF FORESTER / Monitor staff

  • Paul Ernsting walks around his yard after playing with his dog around the holidays last year.  GEOFF FORESTER / Monitor staff

  • Paul gets a hug from Brenda Bouchard during her husband Ken’s memorial service last year. The couples met at an early-onset Alzheimer’s support group. GEOFF FORESTER—Monitor staff

  • Susan Ernsting rests her head on Paul’s shoulder during Ken Bouchard’s memorial service last year. GEOFF FORESTER—Monitor staff

  • Paul and Susan Ernsting like to go bowling at the Dover Bowl where Paul still plays well. On Tuesday night at the bowling alley, Paul was careful and calculated while enjoying the sport. GEOFF FORESTER / Monitor staff

  • While Susan Ernsting had a doctor’€™s appointment, Paul checks out the main board for his colleagues’ names on the directory listing. GEOFF FORESTER—Monitor staff

  • While riding out to their Christmas tree, Paul strikes the Horatio pose, something he repeats often as Susan knows all too well. GEOFF FORESTER—Monitor staff

  • Paul and Susan adopted a 5-year-old rescue golden retriever, Dustin, that Paul walks every day. Paul spends his days on the couch watching police dramas like CSI Miami. GEOFF FORESTER—Monitor staff



Monitor staff
Monday, April 09, 2018

Paul Ernsting was the kind of man people went to for help.

As a primary care doctor, he assured parents their children’s sickness was nothing more than a fever or a runny nose. As a brother, he was a steady source of wisdom and advice. As a father, he’d crouch behind a catcher’s mitt as his son honed his fastball.

Now it’s Paul, caregivers by his side, who needs guidance.

When he was suddenly diagnosed with Alzheimer’s at age 52, Paul struggled to find the right words mid-thought. As the disease progressed, his ability to do small tasks, like making a pot of coffee, began to slip away.

Now 57, the past few years have been full of adjustments. The disease has forced him to let go of big parts of his life, like his job and his ability to drive. And he’s learned to rely on other sources of strength, like his family and his physicality.

Paul has had to fight through stigma, fear and loss, but one thing has been non-negotiable.

“I’m not going to sit around and wait for my death sentence,” Paul said. “That’s just not who I am.”

Uncertainty

For Paul’s family, a lot of dealing with his diagnosis has been accepting unknowns.

“We don’t have a crystal ball,” Paul’s wife, Susan, 56, said one day while making a dinner of chicken pot pie for her and Paul in their kitchen.

“We know how this is going to end, but we don’t know how we’re going to get there.”

For most of Paul’s life, his work as a doctor was central to his identity. He met Susan when they were both in college. Then, they moved to Iowa together, where Paul attended medical school.

When they moved to Dover and had kids, Susan was usually in charge of dance and soccer practice drop-offs after she got out of her job as an elementary school teacher. Paul, meanwhile, worked late.

Some nights, he’d work until 3 a.m. when the hospital’s computer system would shutdown. Susan would leave a plate of food for him in the fridge.

“He was so committed to his work,” Susan said. “I don’t know if it would be possible for a doctor to care more for his patients than Paul did.”

Diagnosis 

The Alzheimer’s diagnosis came after two colleagues at Dover Family Practice pulled Paul aside and told him something wasn’t right.

Paul had never had any complaints from patients. His reviews were usually stellar. But one patient said Paul seemed “confused” during a recent visit.

He’d had more late nights, he was double-checking his notes and there was a newfound hesitancy in performing parts of his of job.

Paul took a neuropsychological test that revealed a loss of short-term memory. He couldn’t remember an address or a sequence of fruits and colors for more than a few minutes. He failed the test, but he still wanted to continue with his work.

Paul was finishing up with a patient one day when an administrator pulled him out and told him he had to go. The hospital sent out a letter to his patients saying Paul was on medical leave.

“That was really hard,” he said. “It was humiliating, and I felt like I was letting my patients down.”

A new life

Now, Paul stays home most days.

Susan is still working as an elementary school teacher in the Rochester School District. With her $56,000 salary, she is able to contribute to Paul’s medical bills and provide them both with health insurance.

Susan leaves for school at 7:30 a.m., while Paul watches police dramas unfold from his living room couch. His favorite is CSI: Miami and main character Detective Horatio Caine.

“I love when he stands with his hands on his hips like this,” Paul said, imitating the actor.

He and Susan adopted a 5-year-old rescue Labrador, Dustin, that Paul walks every day. They either walk around the neighborhood or play fetch outside.

Most neighbors who live in the Ernsting’s development know Paul has Alzheimer’s, so he feels safe there. A few are even former patients of his.

Paul no longer drives, and he doesn’t have control of his money.

Advocacy groups like the Alzheimer’s Association tell families to take care of financial and legal planning as soon as possible, so decisions can be made while individuals are still of sound mind.

Susan spent the first two summers after Paul’s diagnosis on the phone with lawyers, insurance agents and credit card companies. She had to take Paul off shared credit cards and switch bills and coverage so it would all be in her name.

Susan did not expect such a challenging process.

Often, officials would want to speak to Paul, but it became difficult when Paul had trouble remembering personal details like his social security number or his birthday.

Susan has finished taking care of those logistics, but she still runs into problems.

“He still gets credit card offers, and you have to try to run to the mail and chop them up,” she said.

Relationships

Paul has tried to keep an active social life, even with the disease, but it can be trying.

“People are afraid. They’re afraid to speak for him, or assume he can or can’t do something,” Susan said.

Some days, Paul will tell Susan he has plans and forget whom he made them with.

He still goes golfing from time to time with his brother. They’ve found ways to make it easier for Paul, labeling his clubs and helping him along the way.

Paul’s physicality is impressive. He has always been in good shape – when he played baseball in college, he led his team in stolen bases.

A few friends from the hospital go bowling at the Dover Bowl. 

On a Tuesday night at the bowling alley, Paul was careful and calculated. He brought his own ball and shoes, and he used a green hand towel to wipe off grease from the pins. He rubbed white chalk on his hands to improve his grip.

When it was his turn to bowl, he stood up to the lane, staring at the pins and holding the ball up to his chest before letting it roll down the lane.

Paul bowled a strike on his first frame – but his friends needed to remind him when it was his next turn.

Practicing

Paul has a decorative box filled with cards and photos his patients sent to him after he was diagnosed.

When he’s talking about his patients, his face lights up. He wonders what one of them, a teenager when Paul left, is doing. He laments that another has passed away.

One weekend, he went to the doctor’s office with Susan for a routine medical appointment. He sat in the waiting room while Susan was in the lab, and he looked over at the list of the hospital’s practitioners on the wall.

“Most of these are colleagues of mine,” he said. “I’ll show you ones I know.”

Paul went through the list one by one, reading the names aloud. He made comments as he went.

“Oh, he’s good. She’s great. You know most of these doctors are really, really good.”

Paul repeated the same names again, and the same comments, two or three times without noticing.

Paul says he wishes he could still work.

“I miss practicing,” he said. “That was the best thing.”

Normalcy

Paul and Susan try to maintain some sense of normalcy.

In December, they went to Conley Tree Farm in Farmington to pick out a Christmas tree. The family has been cutting down trees there for a decade.

In a field of spruce and firs, Susan laughed when Paul remembered how he always picks trees that have a straight top, while Susan likes trees with a rounded exterior. She pulled off a glove to text a photo of a tree to her two kids – 26-year-old twins Mike and Kathleen.

On the tractor ride back, snow was falling. Paul leaned over and brushed flakes off of Susan’s jacket.

“There you go, Suzi-Q,” he said, smiling. He looked out at the rows of treetops slowly passing by.

“It’s so peaceful out here,” he said.

The future

Susan has felt conflicted on whether she should keep working, or spend time with Paul while she can.

There is one support group for caregivers of younger-onset patients in the state that meets in Portsmouth. Susan started going after Paul was diagnosed, but everyone who entered the group at the same time she did has a spouse who is either deceased or in a nursing home by now.

“I don’t want to keep working and have him deteriorate and end up being in a nursing home, so when I retire I’m by myself,” she said.

“I have to think about how I’ll afford everything. When he’s gone, how will I survive without savings?”

Susan decided to put in for her retirement in February. Too young for benefits, she will look for a part-time job that will offer her more flexibility with caregiving.

There is no way of knowing how long someone with younger-onset Alzheimer’s might live.

Paul is in a research study now at Massachusetts General Hospital in Boston that uses PET and MRI scans to see how his brain is metabolizing glucose.

In the meantime, Paul is hoping to contribute in another way by telling his story.

In the beginning, he felt a lot of shame about his disease, and he didn’t want to talk about it. As a primary care doctor, Paul treated patients with Alzheimer’s and other dementia cases. He saw how hard it could be on a family.

Some days, he still has to remind himself that the disease is not his fault.

“I know I can’t hide it,” Paul said.  “That doesn’t do any good.”

(Leah Willingham can be   reached at 369-3322, lwillingham@cmonitor.com or on Twitter @LeahMWillingham.)