Finding Your Cause After an Alzheimer’s Diagnosis
Advocacy As the brutal disease takes its toll, memories and routines are lost. Three families share their stories and how they advocate for the cure.
There is no silver lining when it comes to Alzheimer’s disease. It is fatal, and there is no cure, which means that more than five million Americans currently living with the brutal illness will eventually lose their memories, gifts, spirits and lives. A diagnosis is also devastating for their loved ones, who must watch and grieve as their spouse, mother, father, or friend gradually forgets the most basic life skills and even who they are.
Within the grim statistics, suffering and heartbreak, however, there are inspiring stories of hope, strength, character, resilience and love.
Putting up a tough fight
Cynthia Huling Hummel was preparing to defend her doctoral thesis when she noticed she could not recall classes she had taken, books she had read and, at times, classmates and professors. She says, “It was very scary. I couldn’t remember conversations with parishioners in my church. It was as if my brain was like Swiss cheese, and it was very upsetting.”
“‘I've discovered that there is life after an early diagnosis.’”
She was diagnosed with mild cognitive impairment (MCI) in 2011 at age 57, and her diagnosis was recently changed to Alzheimer’s. Though it’s understandably difficult to delve into frightening symptoms, she is a believer in facing reality as quickly as possible. For one thing, there are many treatable conditions and diseases that can affect memory and cognition. But, even if it is Alzheimer’s, she believes there is great value in early diagnosis. “It gives folks an opportunity to put their house in order as well as clarify how to spend the time they have left. I've discovered that there is life after an early diagnosis and, in spite of Alzheimer’s, I feel blessed.”
Since being diagnosed, Huling Hummel strives to inform others that she, like all Alzheimer’s patients, is much more than her disease. While she is more alert and connected on some days than others, she still loves to: swim, sing and golf; take classes at Elmira College to keep her mind active and engaged; and volunteer for the Alzheimer's Association. She says, “While there are some things I can no longer do, I have a full and interesting life.”
She is also an advocate in the movement to find a cure for Alzheimer’s, and has participated in numerous clinical trials over the past five years. She says, “I believe a cure is in sight, but researchers need volunteers to move closer to that goal. It makes me happy to know that I am making a difference in a quest for a cure. It is empowering, and I feel like I am fighting the disease.”
Caring for the one you love
Brad Anderson’s wife, LuAnne, is the love of his life. High school sweethearts, they’ve spent decades together, raising children, dancing, traveling and being there for one another. In 2010, following several years of worrisome symptoms, LuAnne was diagnosed with Alzheimer’s at age 55. In the nearly six years since then, he has watched her transform into a person he still loves dearly, but who in many ways is already gone. Of the disease, he says, “Alzheimer’s is not ‘forgetting’—it is the slow death of your brain, one synapse at a time. When you have Alzheimer’s, your thoughts are dying, and you along with them.”
While it is hard enough to watch your spouse fade away, the toll is compounded when you’re also the primary caregiver. Anderson has overseen LuAnne’s care from the very beginning and at times it has been a complex, gut-wrenching challenge to keep up with the disease’s evolution while balancing career, daily life and the desire to make the very best decisions for his wife. “The collateral damage of Alzheimer’s is often overlooked. It had a dramatic impact on my job, our income, our finances and our retirement savings. While it was not the case with us, it often tears families apart.”
“‘When you have Alzheimer’s, your thoughts are dying, and you along with them.’”
Initially, Anderson says, caregiving for LuAnne involved the not-so-simple task of finding something for her to do that would occupy her days. She was able to work in a library for a while, but eventually lost the ability to function productively. As the disease progressed, Anderson’s own job in sales became untenable, and he took on a job with less stress and less pay. His relationship with LuAnne “became very much like I was raising a three-year old child with a lifetime of chaotic fragmented memories, but lacking the comprehension, judgment and understanding that these life experiences should bring with them.”
In 2014, when it became clear that LuAnne would not be safe at home even with supervision, Anderson made the very difficult choice to place her in a long-term care facility. It was a decision that brought no relief, though Anderson says he knows he made the right one. “When you spend a lifetime with someone, they are always in your thoughts, while your heart and your head will not agree even when you know it is the best thing. I will always feel that I have failed her in some way.”
Anderson has found some comfort through a support group of individuals with similar experiences and has become a passionate advocate to increase funding for Alzheimer’s research. He says, “We’ll spend $236 billion in 2016 just to care for those living with Alzheimer's and costs will increase to an unsustainable $1.1 trillion by 2050. If we find a treatment by 2025 that delays the onset of Alzheimer’s by five years, we could save a projected $367 billion by 2050.”
As big as those numbers sound, they pale in comparison to the human cost. Anderson says, “The human toll cannot be measured. How do you put a value on a mother not recognizing her daughter, or a grandson never knowing his grandmother, or the love of your life forgetting who you are?”
“‘Our sons had to grow up very fast as the disease reduced her capacity to care for herself.’”
Advocating for the cure
Lucien Richardson’s wife, Frances, was diagnosed with early onset Alzheimer’s at age 49, and died in 2010 at age 58. When she was diagnosed, their sons Jonathan and Brennan were 17 and 14, and the whole family played a role in her caregiving. Lucien says, “Our sons had to grow up very fast as the disease reduced her capacity to care for herself.”
Brennan says caring for his mother, “can best be explained as a bucket underneath a faulty pipe. Initially, there may only be a few drops in the bucket, but as time progresses the weight of the bucket becomes increasingly more difficult to lift.”
Today, Lucien and his sons are strong advocates, working to educate others about the fact that Alzheimer’s is not a normal part of aging and that the cost of continuing without a cure is much, much too high. Brennan says, “From a human perspective, funding is important so that another child no longer has to watch a parent be stricken with disease. From a fiscal perspective, funding is important so that we don't cripple future generations with the financial burden this disease places on caregivers, local communities and the nation as a whole.”
While there may not be a silver lining when it comes to Alzheimer’s disease, Cynthia Huling Hummel, Brad Anderson and Lucien and Brennan Richardson are all hopeful that advocacy, education and increased funding will soon lead to a cure.