When Josť Belardo was diagnosed with Alzheimer's disease at the age of 50, his wife, Elaine's first thoughts were of loss and hopelessness.
By RIMSIE MCCONIGA
When José Belardo was diagnosed with Alzheimer’s disease at the age of 50, his wife, Elaine’s first thoughts were of loss and hopelessness.
Her thoughts of despair took her straight to the end of what she believed would be the disease process. And she found herself obsessing about what she already knew about the disease — the suffering, stress and sadness of watching a loved one lose themselves without hope of finding their way back.
“The worst was all I really knew,” says Elaine. “Sadly, that is where I was pointed to by some health professionals and lay persons.”
Juliette Bradley, who is the Communications Director for the Alzheimer's Association - Heart of America Chapter makes sure that Alzheimer’s patients and their families also know there is hope — and help. She says although the diagnosis of Alzheimer’s is overwhelming for most people, the Heart of America Chapter is here to help anyone who is in the midst of an Alzheimer's journey.
“That ‘help’ might look different for each family,” says Juliette. “One family might just want to review the materials we have available in our resource library. Another family might want an in-person care consultation, another family might want to join a support group, and yet another family might want to attend our education programs. Each family is different. We are here to help all of those families navigate their own personal Alzheimer's journey — whatever that looks like. However that journey plays out, any help we provide to those families is free of charge.”
When Elaine began noticing that her husband’s short-term memory and planning ability seemed compromised she also became aware of José’s increased withdrawal and a growing lack of interest in events he once enjoyed. He believed he was suffering from depression. But the progression of the disease was aggressive and they soon knew that something was terribly wrong.
José’s career in the military and public health service over a 26-year period was notable for how fast he ascended, and how he was a change agent wherever he was assigned nationally and internationally. His many years in public health service however, didn’t prepare him for completely understanding what he would be up against with Alzheimer’s.
“I wouldn’t say he had a detailed understanding of Alzheimer’s disease because the only way to have a detailed understanding is to live in it and with it in close and personal proximity,” says Elaine. “Even with that said, dementia is wide and varied, so the details anyone knows are limited to their experience with it. I wouldn’t credit anyone with detailed understanding of something as nebulous as this disease. Every person living with dementia experiences it differently.”
José was a lifelong learner. He loved U.S. and world history and had a particular interest in geography and American and world conflicts and wars. He loved sports of all kinds — youth, college and professional. His favorite place was on a beach.
Elaine served in the United States Army Nurse Corps for seven years, and after being deployed to the Gulf War, where she met José, they married, their children were born and she left the service to stay home with the kids while José pursued his goals to make an impact in the global public health arena.
As his full-time caregiver Elaine says she had to get a vision for a life that she in no way expected to live. “We are young, and all of our hopes and dreams were built on a life without chronic illness, let alone an illness with no treatment or cure,” says Elaine.
She is determined to continue José’s life-long commitment to public service by being the voice of those with Alzheimer’s.
“José has always been a voice for those whose cries were faint and unheard,” says Elaine. “As an Army social worker he advocated for soldiers and their family members who survived domestic violence, sexual trauma, combat stress, and a host of social conditions. As a Public Health Service Officer he worked nationally and internationally to advocate for health care for the deprived and disadvantaged, and for those whose lives were upended by natural disasters or disease outbreaks like Ebola. Alzheimer’s disease is a public health emergency. There is no cure, no treatment and it is a growing health crisis and financial burden. José is one of 5.7 million people currently living with dementia. I am one of the 16.1 million Americans who provide care to a person living with dementia. More people will die from Alzheimer’s dementia than breast cancer and prostate cancer combined as it is the sixth leading cause of death in America. But, here is where I am called to advocate. José did not die when he was diagnosed. He does not forget everything all at once. José is in the stage that lasts the longest, the middle stage, but seems to have the fewest resources. There should be non-medical programs in every community for people who are living with dementia. They can be active, engaged contributors to society given the opportunity to do so. I’d like to start an arts and inspiration program in the Leavenworth/Lansing community for people living with dementia. I am an advocate for hope.”
And hope is something that Juliette knows is vital to Alzheimer’s patients and their families. One of the most hopeful advances in Alzheimer’s research is how biomarkers are transforming the way that researchers and physicians understand the disease from one based on symptoms to one based on changes in the brain.
“Individuals no longer need to be diagnosed with Alzheimer's after significant damage is already done to the brain,” says Juliette. “Instead, due to awareness of Alzheimer's and recognition of early symptoms, as well as the development and approval of beta-amyloid imaging biomarkers, Alzheimer's diagnosis can occur earlier in the disease process than ever before, such as in the Mild Cognitive Impairment due to Alzheimer's stage of the disease, and one day perhaps before symptoms even begin. Researchers envision that defining Alzheimer's disease as a biological construct will enable a more accurate understanding of the sequence of events that lead to the cognitive impairment associated with Alzheimer's disease, as well as the multiple causes of the disease.”
If a person is diagnosed in the earliest stage of Alzheimer’s they will be less likely to mismanage diseases they already have such as diabetes and they can avoid hospitalizations because they have more structure and resources in place to help them.
Early diagnosis allows people more time to make arrangements for their future care. And they can feel secure that they are still in a position to make legal, financial and end-of-life decisions while they are still cognitively sound.
According to Sarah Lock, senior vice president for policy at AARP and director of the association’s Global Council on Brain Health, “Earlier diagnosis can also help alleviate the terrible financial burden of dementia on individuals who often must pay a large chunk of their related health care out of pocket.”
Speaking strictly in financial terms, Julia says, “There is typically a spike in healthcare costs for anyone who is diagnosed with Alzheimer's disease, but research has shown that in today's environment — in which diagnosis too often occurs in the dementia stage or not at all — the projected health and long-term care costs of an individual with Alzheimer's is $424,000. Under the partial early diagnosis scenario, in which an individual has a greater likelihood of being diagnosed during the Mild Cognitive Impairment stage of the disease, the average per-person cost is projected to be $360,000 — a savings of $64,000 per individual.
Early diagnosis is beneficial for people because they can participate in clinical trials. They can also maximize time spent engaging in meaningful activities and interacting with family and friends.
Elaine’s children Lauren, Morgan and Jared help her care for José and they all receive love and support from their family, friends and the community. “My children are all helpful and respectful of their dad,” says Elaine. “We treat him with love and maintain his dignity. We share laughter, joy, and the sorrow that comes with this disease. We are intentionally mindful of the ‘zingers’ (the things he has forgotten that hurt) that are out of our control that accompany this disease with many facets. We support one another. My kids are handling a tough situation as well as can be expected.”
The stigma of Alzheimer’s is troubling for Elaine. “The stigma is that their ‘life is over,’ a person with dementia is ‘gone,’ a ‘shell of their former selves.’ That may be the eventuality to come, but it is not the reality of what is at this moment. Jose’ is an active part of our family dynamics. We adapt and overcome challenges as they present themselves. After you wrap your mind around your upended life you have to look for a way forward. The way forward cannot be traversed alone. Utilize all the resources available through the Heart of America Alzheimer’s Association. They have programs and support groups that are beautifully facilitated for both the person living with dementia and the care partner. We go twice a month, and although we are among the youngest in attendance, we are surrounded by people who inspire us. Ask for help, accept help, and trust that people have the capacity to live and reach beyond themselves to help others.”
The family recently hosted a 12-hour bake sale to raise money for the Alzheimer’s Association – Heart of America Chapter.
Elaine’s daughter, Morgan, a junior at Lansing High School, and a team of volunteers did the baking.
The most important thing for Elaine is to advocate for her husband. “He is a living, breathing person of great value. He was an outstanding person who cared deeply for us and others before he became ill. He has not seen his children marry, or have grandchildren. He is 52 years old, and I will advocate for him to live the best life possible. He is a beautiful person and easy to love.”
Juliette believes that no one should go through this journey alone and the thing she values the most about the Alzheimer’s Association is that they always treat everyone with the disease with dignity and integrity and encourage them to be involved in the community as long as they can through social engagement groups. “Every day we strive to make sure our communities know that our organization exists and the services we offer to families experiencing Alzheimer's are free of charge. We never want to hear, ‘Oh, if I had only known you existed when my mom was going through this.’ We want the public to make an automatic connection to the Alzheimer's Association whenever someone they know receives an Alzheimer's diagnosis. An Alzheimer's diagnosis is not the end of someone's life, it is a new chapter and the Alzheimer's Association is here to help them through that chapter.”
For Julia, the most challenging part of her job is reducing the stigma that is associated with Alzheimer’s.
“Alzheimer's is the sixth most common cause of death, yet it is the only one of the top 10 causes of death without a cure or way to prevent it. It is fatal. We don't have survivors at our Walk to End Alzheimer's finish line. Everyone needs to stand up to this disease — it is time to talk about it — time to face it — time to do something about it.”