LAWTON – Caring for her elderly grandfather who was diagnosed with Alzheimer’s proved to be a “terrifying” experience for Sara Paape.
Her grandfather was diagnosed with the disease in 2005 when there were few groups to help caregivers.
“We did the best we could,” said Paape, a Lawton resident. “We would have been so much better off if we had resources. It was terrifying. There were good days and bad days.”
Now, Paape is the volunteer chairwoman of the Oklahoma Healthy Brain Initiative Coalition, which is a collaborative effort to advance public awareness and action related to Alzheimer’s disease and other dementias as a public health issue in Oklahoma. The group’s first task is to update the Oklahoma State Plan to address Alzheimer’s disease. The coalition is part of the Oklahoma State Department of Health.
During a 10-year period from 2005-2015, Paape also dealt with her grandmother who fought an autoimmune disease. Her grandmother died in 2010 followed by her grandfather’s death five years later. But the medical issues were far from over. In 2018, Paape’s father experienced a scary heart problem.
Paape, her mother, father and her daughter were the people who cared for the elderly grandparents. Fortunately for her grandfather, he was able to stay at home for most of the 10 years he dealt with Alzheimer’s. The family lived in Lone Grove, a rural community in Carter County, so traveling long distances wasn’t a problem.
As the grandfather went through the early stages of Alzheimer’s, he appeared fine.
“It took a couple of months to realize this was going on,” Paape said.
As the family struggled to deal with an Alzheimer’s patient, the grandfather lost his driving privilege, which placed a greater burden on Paape and her parents.
“There was so much on our plates,” she said. “All we could do was take one step at a time and breathe. There were a lot of adjustments for my daughter who was two when my grandfather was diagnosed. There were times when we had her birthday parties at the hospital where my grandmother was hospitalized. The child grew up with some holidays in the hospital.”
Paape and her family learned about special diets and specialty care, “but most important we learned to spend time with family.”
Helping Others
Now that she’s involved with the health department’s healthy brain initiative, Paape wants to ensure families get the resources they need when dealing with an Alzheimer’s patient.
“For me, it’s the most incredible thing people are doing,” she said. “I want to make life better for other people. I was 25 when I started this journey with my grandfather and my daughter had an untraditional childhood. Sometimes, we made a mess out of things, but we learned to take it one task at a time.”
As an Alzheimer’s caregiver, Paape remembers reading her graduate level textbooks to her grandfather as he sat in his living room chair. Then, there were times when she was exhausted and would lay down on the couch next to his recliner and he would pat her head.
“He was taking care of me and I was taking care of him,” she recalled.
Now 42, Paape is a freelance writer, owns a consulting company and is dedicated to helping Alzheimer’s patients and caregivers.
Morgan Fitzgerald, Oklahoma Healthy Brain Manager, said the health department and its partners are working to develop a new plan for Alzheimer’s.
“We want to create a better system for caregivers,” she said. “There are gaps in resources in Oklahoma. We want to get organizations to extend their resources into rural areas of the state.”
There are about 67,000 people in Oklahoma living with the disease at any given time. In addition, there is likely to be 13.5% more people diagnosed with Alzheimer’s by 2025, the health department estimates.
As a result, the health department wants to create more support groups, more public education about the disease and have an increase in early diagnoses. There currently is no known cure for Alzheimer’s, but medications can slow the progression of the symptoms, Fitzgerald said.
Some of the collaboration will be seen in the form of support services that can provide clinical trials, financial and care planning so patients can let their families know their wishes before the disease progresses into the final stage.
“We’re here to help people connect with the right resources,” Fitzgerald said. “We will gladly point them in the right direction.”
The 10 warning signs of Alzheimer’s disease are memory loss that disrupts daily life, challenges in planning or solving problems, difficulty completing familiar tasks, confusion with time or place, trouble understanding visual images and spatial relationships, new problems with works in speaking or writing, misplacing things and losing the ability to retrace steps, decreased or poor judgement, withdrawal from work or social activities and changes in mood or personality.
For more information, contact the Center for Chronic Disease Prevention and Health Promotion at (405) 426-8300 or email centerta@health.ok.gov.