If Tim Belanger could give one piece of advice to families facing a loved one’s diagnosis of Alzheimer’s disease, it would be to make a plan. Knowing little about the disease when his mother, Anita, was diagnosed in 1995, Tim, his father and two brothers never imagined what the next 10 years would bring.
In 1995, Alzheimer’s was starting to gain traction as a national health issue. Former President Ronald Reagan announced to the world his diagnosis the year prior, but public awareness and education, including in the medical community, still had a long way to go. Tim says his main source of information on the disease was the public library, which he found helpful, but limited. “The internet was not what it is today,” he explains, “and we were unaware of the Alzheimer’s Association back then.”
Tim, a realtor and board member of the Alzheimer’s Association’s National Capital Area Chapter, recalls, “We had no plan. We were left scrambling, reacting to each situation as it arose.”
At the time of the diagnosis, Tim was in his mid-30s living in Northern Virginia, and his two brothers lived close to their parents’ home in Uxbridge, Massachusetts. But without warning, his father sold the house and moved more than 30 miles away. Tim surmises about his father’s decision to leave their community and potential support system: “He didn’t want anyone to notice the change in her. In his mind, she would just become the person who sat in the corner and didn’t remember anyone’s name.”
Mr. Belanger’s reaction is quite common. In fact, “stigmas and misconceptions associated with AD” were added as priority challenges to the country’s National Plan to Address Alzheimer’s Disease in 2014, as they “profoundly impact the care provided to and the isolation felt by people with AD and their families.”
Similarly, as Tim shares, “After more than 50 years of marriage, my father felt he was the one who could best take care of her. He had always been very healthy, but taking care of my mother wore him down, especially the last couple of years.”
The Alzheimer’s Association offers families like the Belangers access to resources and service providers that help them make informed choices that address their concerns, as well as prepare them for and support them throughout their own journey as caregivers.
Tim knows his brothers pitched in as much as they could while balancing the demands of their own young families. As the long-distance brother, Tim wished he could do more. “I called my father five or six times a week between visits to see how he was coping. But my support was mostly financial. The medical expenses wiped out my parents’ savings,” he says.
Because families like Tim’s spend an average of $5,000 per year caring for a loved one with Alzheimer’s, and may lose over $15,000 in annual income from having to reduce or quit work, the Alzheimer’s Association created Alzheimer's Navigator with a Financial Planning Tool. It starts with a short, simple survey about your current resources and needs, then provides a personalized action plan complete with links to information about long-term care expenses, budgeting, tax credits and deductions, insurance and government benefits.
Helping Pave the Way for a Brighter Future
Anita Belanger passed away in 2004, and Tim’s mother-in-law, Miriam was diagnosed shortly after. It was during Miriam’s five-year struggle that Tim and his wife Ilissa got involved with the Alzheimer’s Association. Remembering his now deceased father’s struggles and own feeling of helplessness, Tim did not want other families to feel like they were on their own.
In the fall of 2016, their team “Walkers for Miriam and Anita” raised $5,895 in the Walk to End Alzheimer’s® in Northern Virginia, which Ilissa has chaired for the past several years. The dedication of Tim and Ilissa - 2012 recipients of NCA Chapter’s Inspiring Champions Award - and others like them, enable the chapter to support people with an Alzheimer’s diagnosis and their families, helping them plan for the future and manage day to day. Asked why they continue to give countless hours to the cause, Tim doesn’t hesitate to say, “We do it for our mothers.”
The Alzheimer’s Association is here to help, whether you are looking to address a specific need now or plan for the future. Alzheimer's Navigator® is a user-friendly education and planning tool, while the Community Resource Finder can help in the areas of housing, care giving, medical services, transportation and elder law. The Alzheimer’s Association 24/7 Helpline also provides reliable information and support anytime day or night at 1.800.272.3900.