It is quite common for people to have friends whose parent or spouse has Alzheimer’s disease. We would all listen and try to empathize as they describe their difficulty, but until it literally hits “home,” it is impossible to understand. Anyone that has been touched by this disease quickly nods in agreement.
Alzheimer’s Disease is one of the cruelest of all illnesses as it not only affects the patient, but impacts all elements of the lives of their loved ones. It demands an overwhelming and ever-increasing time commitment from all the caregivers, which can easily derail their family life, career, social relationships, finances and health.
Despite all of these things, the worst is watching a loved one disappear before your own eyes. There is nothing that can prepare you for such a scenario. Could this be one of the cruelest of all diseases? Unfortunately, this is true. The Alzheimer’s Research Association has been devoted to, not only funding innovation and research, but also has been the primary advocate for caregivers for over ten years.
While the timeline and scenario may be different, everyone may have a similar story to tell.
My husband, Joe Lucido, and I started noticing that his father started to simply forget things and suddenly became a less than safe driver. We assumed it was due to his declining hearing and sight; common among older people. The rest of the family started reporting similar stories.
He quit driving, but continued taking part in his daily walks at the mall with his friends, which was very important to him, for both his health and social life. He never wanted to inconvenience anyone for a ride home, but one day when he boarded the wrong bus, we knew somebody needed to be there every day to pick him up. When his trips to the mall became less frequent due to weather and time constraints, this accelerated his downward spiral as exercise and socialization can act to alleviate some of the obvious symptoms of Alzheimer’s.
In retrospect, his disease progression was gradual. However, there are times when the disease symptoms can go from a nuisance to something that can often create “emergencies” any given day or hour.
What now? We had no idea what to do and while there was a lot of information about the disease, there was simply minimal guidance as to what those unexpecting people who assume the role of caregiver should do to provide some level of care. Joe attended a local health expo in search of some guidance in how to manage these new challenges. There were a few people at each booth for various diseases, but there was one particular line which had over 40 people, many of whom were talking amongst themselves while they waited in line. It was a local organization trying to supply information about Alzheimer’s. Joe quickly recognized that we were not alone and that people desperately needed help managing this disease.
Joe had lost his leg many years earlier and remembered that there were many entities that could help him and offer support. He quickly realized that we could create a much-needed organization that could not only support research, but also be the first organization to primarily focus on providing support to caregivers. How best to assist someone suffering from Alzheimer’s? Help their loved ones effectively manage the obstacles that have significantly altered their lives.
Joe had experience in a number of businesses, while I already worked in senior healthcare, which helped us apply some specific skills to this new organization.
We launched Alzheimer’s Research Association (ALZRA) and the accompanying website in 2010. We made caregivers to have a place to go for tips on how to care for their loved ones and we wanted to offer some financial help. Joe’s father succumbed around this same time to Alzheimer’s after a five-year battle. Surprisingly Joe’s mother started presenting some of the same symptoms of Alzheimer’s. We were quicker to recognize her difficulties and she ultimately moved in with our family soon after we started ALZRA. We were creating and developing the various sectors and plans of our organization, in real-time daily as our family was forced to overcome new challenges as
her disease progressed. Joe and I realized we were lucky enough to have the financial and physical help from the rest of the family. It is shocking that many people are forced to manage this by themselves.
We researched and compiled a substantial amount of information about how to manage the disease and where to find assistance. We created the Alzheimer’s Handbook so people could learn the best methods to effectively help the patient. We did, however, learn the dirty secret that often confronts caregivers; financial need. People often have to work less or quit their jobs and/or pay for a caregiver as Medicare and insurance do not reimburse for hired help. The onset of Covid only exacerbated the financial hardships faced by people.
We quickly decided that we would allocate a portion of our funding toward assisting caregivers that find themselves in desperate circumstances, by providing grants to the caregiver to be used as they see fit for the Alzheimer’s patient. Perhaps it is a short-term situation or a culmination of expenses that put people in need of financial assistance.
We have steadily expanded the website for over ten years, but my beloved husband, Joe, succumbed to liver cancer last year after a long and arduous battle. He never stopped working with caregivers, and, in fact, dedicated much of his final years to making sure ALZRA could continue to be a resource for both finding a cure and offering assistance to caregivers. It became, in addition to his family, his life’s work and his most important legacy.