Daughter watched her dad lose ‘pieces of himself to cruel disease’ — Alzheimer’s

One of the toughest things Sarah Gostonczik had to watch was her father slowly “losing pieces” of himself over 12 years to a cruel disease — Alzheimer’s — which “robs people of dignity” and their life.

Her father, Dr. Mark Steine, 78, who practiced family medicine in Osage for 18 years and then went back to school to become an anesthesiologist and worked another 18 years for UnityPoint-St. Luke’s Hospital and Mercy Medical Center in Cedar Rapids, before being diagnosed with dementia and dying in May 2023, after a bout with the flu and then a serious fall.

“He was a brilliant doctor and pilot, avid reader and bicyclist, and loved Iowa wrestling,” Gostonczik, a sixth grade literacy and social studies teacher at Hazel Point Intermediate School in Marion, told The Gazette. “He was such an intelligent person, so it was hard seeing him declining. He started forgetting things and where things were in the house he had lived in for 28 years.

Her mother, Roxann Steine, 77, was his main caregiver and when it started taking a toll on her physical and mental well-being, her family had to make the tough decision of moving their loved one into a memory care facility in August 2022.

Gostonczik agreed to share a little about her father’s “journey” in hopes of highlighting National Alzheimer’s disease Awareness Month and Family Caregivers Month. She hopes one day soon there will be a cure for this “horrific” disease.

The number of people 65 and older with Alzhiemer’s in Iowa was 66,000, according to most recent Alzheimer’s Association statistics from 2020. They estimate there will be 73,000 diagnosed by 2025.

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Of the 66,000 patients, there are 98,000 “unpaid caregivers” — family members taking care of them.

Many of those caregivers also are develop health and mental conditions as a result from providing that care. The association states over 60.5 percent of caregivers have chronic health conditions; 27.4 percent suffer from depression; and 13.8 percent are in poor physical health.

Gostonczik, before they moved her father into a facility, took some intermittent time off from teaching to help her mother, after being encouraged and supported by friends and family members. Looking back, she is happy she got that time to spend with her dad.

What she learned and advice she would give to other caregivers is to find “joy in the small moments because the sadness can be overwhelming.”

Her mother is the most “patient person on the planet,” but she needed some relief from the daily frustrations and stress of dealing with someone that experiences memory loss, loss of mobility, reduced communication skills and behavioral and personality changes.

It’s important to watch out for the caregiver, Gostonczik pointed out. It took an emotional toll on her mom because it also changed life. She lost “her person, travel companion and bridge partner.” A caregiver loses their independence because they have to attend to another’s full-time needs and have little time for themselves, she added.

Gostonczik said her mother wanted her to mention that caregivers should be aware that people with dementia don’t like large crowds because they are confusing and they don’t like a lot of noise.

Roxann Steine also suggested every day advice such as, helping the person at meals by preparing their plate — putting the food on it, instead of leaving it up to him/her, which can be overwhelming. The caregiver should also show them where things are in the house, so they aren’t panicked when they need to do something and can’t find it in the house.

Lauren Livingston, director of communications with the Alzheimer’s Association Iowa Chapter in West Des Moines, said one of the most important things is to ask for help from family and friends and suggested reaching out to the association chapter for resources to help caregivers.

The association recommends for diagnosed individuals and their families to educate themselves about the disease, including disease symptoms, progression and common challenges facing caregivers.

The Alzheimer’s Association offers disease-related information, including online and in-person education programs and other resources that can help.

Currently, there are two FDA-approved treatments for early Alzheimer’s disease: Leqembi and Aduhelm, according to the association. Both treatments — and a third treatment seeking FDA approval, donanemab — have been shown to slow progression of the disease during the earliest stages by targeting beta-amyloid, a key protein associated with brain cell death in Alzheimer’s disease.

By slowing the progression, these new treatments may enable individuals to have more time to participate in daily activities and live independently, according to the association. For family caregivers, these treatments will delay the need for more intensive care while providing more quality time with their loved ones.

The Alzheimer’s Association also offers a 24-7 Helpline (800) 272-3900, staffed by master-level clinicians that are available day and night to help family caregivers navigate disease-related challenges.

Comments: (319) 398-8318; trish.mehaffey@thegazette.com