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The Malone Siblings

Tim Belanger


 

Planning, Mutual Support Keep Families Together

The Malone Siblings
Tracy, Nolan and Shannon



While the care of a loved one with Alzheimer’s is specific to each individual and family, there are lessons anyone can take away from the Malone siblings, Tracy, Nolan and Shannon. In 1998, when it was clear that their father Buck needed help caring for their 64-year-old mother Paddy, they pulled together and put their parents’ needs ahead of their own life plans. They were young professionals - Shannon a rising star in a staffing company in Chicago, Nolan a PhD Candidate at University of Pennsylvania with multiple job offers and Tracy a technical recruiter in Seattle, whose husband, former US Air Force, had begun studying for his Bachelor’s and their 1-year old son. All three siblings decided to relocate to Metro-DC to help their parents.

They were giving up a lot. But, according to Tracy, “We never considered it a sacrifice.”

Buck was 73 years old and had retired 11 years before with dreams of travel and relaxation with his wonderful wife. But, it was not to be. Paddy was diagnosed with early-onset Alzheimer’s in 1992 at the age of 59. And now, several years into Paddy’s diagnosis, when she was also suffering from worsening Type 2 diabetes and rheumatoid arthritis, doctor and household bills were piling up. Although Buck was a veteran and had been an attorney for the House Ways & Means Committee, his insurance was not covering enough for him to make ends meet. At every turn, Paddy’s condition had some reason for the insurance parameters to not cover her needs.  Their out-of-pocket costs were between $800-1,800 a month.

Tracy and her family moved in with her parents to become the primary caregiver for her mother. Paddy was too difficult for Buck to handle on his own, and he couldn’t afford in-home care. At 5’9” and having been quite physically fit, regularly playing tennis and golf before the disease took hold, Paddy became surprisingly paranoid and combative at times. Despite her other physical ailments, Paddy was ambulatory and would escape her caregivers and wander. Given her age, people who encountered her didn’t realize she had memory problems, including some medical professionals.

Shannon recalls, “One time we brought Mom to the ER with a urinary tract infection. Dad nearly came to blows with the attending physician, because he didn’t believe she had memory loss.”

Tracy wore a number of other hats in addition to caregiver. “She was ahead of the game,” says Shannon. “She got power of attorney, made and attended all the doctor appointments and handled all the finances.” Nolan and Shannon tag teamed to provide respite for Tracy and their father. They also helped with medical and financial decision-making and, just as important, provided emotional and financial support to their father, Tracy and each other.

In the last year of Paddy’s life, Tracy was forced to return to work to make ends meet.  Her father helped by being childcare for her 4-year-old son, but the family hired an agency daily caregiver for Paddy, which Tracy helped pay for. Sadly, several times, paid caregivers were not experienced with Alzheimer’s or combative, ambulatory patients. Ultimately, Paddy had to be admitted to a nursing home with a memory-impaired unit due to her health declining.  This was not an easy decision and a difficult process since many memory-impaired units were not prepared or covered by insurance if the patient had other ailments like the rheumatoid arthritis.  She passed away in 2003.

All the siblings recommend that every family faced with Alzheimer’s gets help as early as possible. “It’s so important that people get support from organizations like Alzheimer’s Association, so a family doesn’t break up or go bankrupt. We were so blessed with our sibling unit but it did cause stress and anguish beyond coping with the loss of our mother and seeing the aftereffects with our father,” Tracy says. A step-brother from Buck’s first marriage who lived on the West Coast was close to Paddy and felt guilty for being unable to relocate. But, the other siblings understood. “All of us cared and were involved in our own way,” said Tracy.

While the Malone siblings remained close and supported one another throughout their mother’s disease, Buck did have to declare bankruptcy. Fortunately, there is a great deal more information, education and support available to families today than in 1994, thanks to the Alzheimer’s Association and passionate advocates like Tracy who keep government representatives informed and support other caregivers through an online support group. And Shannon, who enthusiastically encourages participation by all in the many fundraising events for awareness, support and research funds.  She also leads the family annually back to the memory-impaired unit for a visit to thank the staff for their support during Paddy’s last months.

The Alzheimer’s Association offers a number of tools and educations programs for younger-onset Alzheimer’s, including legal and financial planning, and care and treatment options.




 

Resolve to Make a Plan: Son Who Lost Mother and Mother-in-Law to Alzheimer’s Encourages Others to Take Action

Tim Belanger



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.


 

Alzheimer's Association

Our vision: A world without Alzheimer's disease®.
Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.