Living with Alzheimer’s: A Daily Struggle for Spouses
“What time is it?” Cheryl Miller asks her husband, John. He wants to answer, but his wife has already asked him that question three times in the last few minutes. Frustrated, John yells at her to stop asking. He instantly regrets it.
“I’m going into the bedroom for a minute,” John tells his wife of 54 years. When he shuts the door, he begins to cry.
Cheryl, 75, has lived with Alzheimer’s disease for nearly five years, but it hasn’t all been bleak. John, 76, said he had some hope for about 18 months when Cheryl was enrolled in a clinical trial for Eil Lilly’s Kisunla, also known as Donanemab. The drug is a monoclonal antibody administered through an IV infusion that targets amyloid plaque in the brain and has been shown in clinical trials to modestly slow memory decline in people with Alzheimer’s disease.
Available Treatments and Trials
Throughout Florida, hundreds – possibly thousands – of spouses are riding the highs and lows of Alzheimer’s clinical trials, hoping for the drug instead of the placebo and praying for a positive outcome for their loved one from whatever treatment is being studied. With nearly 7 million people in the U.S., primarily seniors, diagnosed with Alzheimer’s disease, drugmakers are stepping up research efforts for prevention and treatment options.
Grieving a Loss that Isn’t a Death
It’s 4 p.m. on a Tuesday, and Tino Negri stands amid wives, husbands, and partners whose significant others live with Alzheimer’s or other forms of dementia. On this day, Negri welcomes a few newcomers to the caregiver support group at JEM Research. Although Negri runs more than a dozen support groups from Miami-Dade to Palm Beach county, this one is unique because the caregivers’ significant others participate in clinical trials at the research lab.
A Wife’s Perspective
Suzanne O’Brien of Boynton Beach first noticed signs that something was amiss with her husband, Mike, in 2017. The couple had just moved to Florida from New York where Mike had worked as a financial adviser.
Both Spouses are in a Trial; One Gets a Placebo
“Cancer is a devastating disease, but I think right next to that is Alzheimer’s,” says Duane Williams, whose wife Jacqualin learned in January 2023 that she had a buildup of abnormal tau protein, a hallmark of Alzheimer’s disease.
Conclusion:
Living with Alzheimer’s is a daily struggle for spouses, with each new day bringing a different battle and a new challenge. Every small breakthrough in the Alzheimer’s space offers hope, while every abandoned or failed drug trial leads to despair. For those who care for a loved one with the disease, the emotional toll is immense, with many feeling isolated and alone. However, it is crucial to remember that there is hope, and that researchers are working tirelessly to find new treatments and a cure. By participating in clinical trials, individuals like John and Cheryl Miller, and Tino Negri, are contributing to the advancement of this research and the possibility of a better future for those affected by Alzheimer’s.
FAQs:
Q: What is Alzheimer’s disease?
A: Alzheimer’s disease is a progressive neurological disorder that affects memory, thinking, and behavior.
Q: What are the symptoms of Alzheimer’s disease?
A: The symptoms of Alzheimer’s disease can vary, but common signs include memory loss, difficulty communicating, and changes in mood and behavior.
Q: What are the different stages of Alzheimer’s disease?
A: Alzheimer’s disease is typically divided into three stages: mild, moderate, and severe.
Q: How is Alzheimer’s disease diagnosed?
A: Alzheimer’s disease is typically diagnosed through a combination of medical history, physical examination, laboratory tests, and cognitive and neuropsychological evaluations.
Q: What are the available treatments for Alzheimer’s disease?
A: There are several treatments available for Alzheimer’s disease, including medications to manage symptoms, therapies to improve communication and daily living skills, and lifestyle changes to reduce stress and promote overall health.
Q: What is the future of Alzheimer’s research?
A: Researchers are working to develop new treatments and a cure for Alzheimer’s disease. This includes studying new medications, devices, and lifestyle changes to prevent or slow the progression of the disease.
