OHIO — Marsha Schaefer, 78, has a fiery personality. Just ask Kurt, her husband of 56 years.
Marsha has needed some extra help since her Alzheimer’s diagnosis 13 years ago. That’s where retired nurse Martha Murphy comes in.
“Gives me a little bit of a respite," said Kurt.
“Her two favorite words Kurt says are ‘why’ and ‘no,'” said Murphy.
Marsha is a diabetic, and in January 2010, she had a heart attack. Kurt said her doctor at the time noticed she may have some memory issues as well, and a cognitive test confirmed she had Alzheimer’s.
Kurt recalls not knowing what to make of the diagnosis.
“I was oblivious and ignorant. Didn’t know what to expect. And quite frankly, I’m still taking it day by day," he said.
Kurt is a caregiver full time. He retired from his job in 2012, and Marsha retired in 2010.
According to the Alzheimer’s Association, more than 11 million Americans provide unpaid care for people living with Alzheimer’s.
They recently moved into a home in North Royalton that is more accessible for Marsha. The layout helps reduce her risk of falling.
“Do we see anything on a daily basis as a change? No. Is it gradual? Yes," said Kurt.
Murphy has been coming to the Schaefer home twice a week for about two years. Part of her time is covered by a grant from the Alzheimer’s Association.
The pair play memory games, go out to eat, cook and enjoy each other's company.
“It’s fun, and the socialization and stimulation are really good. She’s happy. She enjoys it. She enjoys people and life," said Murphy.
Marsha is one of nine children. Kurt said two of her late siblings were also diagnosed with Alzheimer’s.
Kurt and Marsha have two children and six grandchildren.
“What is the hardest, I think for me, is that the grandkids are not recognized all the time," said Kurt.
Kurt said her short-term memory is almost non-existent.
He said the key to caring for someone with this degenerative brain disease is patience.
“I don’t like the word challenges. I say there’s opportunities. Take the positive aspect of it," he said.
Another drug’s phase three clinical trial data is promising and indicates this class of drugs can slow the progression of the disease by targeting its underlying causes.
But the Centers for Medicare and Medicaid Services (CMS) requires enrollment in a clinical trial to receive coverage for any of these treatments.
The Alzheimer’s Association said this is a major barrier for patient access.
“These Alzheimer's drugs that are FDA approved to date are the only drugs approved by FDA that have not been approved by CMS. So again, that adds to one of our reasons as to why we're fighting and advocating every day to have CMS reconsider their decision. That’s why we continue to provide more information at their request, with the unequivocal evidence confirmed by the scientific community. So, we believe that it is now and it is necessary for CMS to reverse their decision because each day matters when it comes to slowing down the progression of the disease," said Camren Harris, public policy manager for the Central Ohio chapter of the Alzheimer’s Association.
The Alzheimer’s Association is also working with Ohio lawmakers to gain additional funding for programs and support services as the number of people living with the disease is expected to increase.