As the incurable disease moves him toward inevitable death, the stress on him and his devoted family becomes overwhelming. A story shared by thousands of Rhode Islanders — and the numbers are mounting.
First of two parts.
NARRAGANSETT – The first signs of the disease that would claim the life of Richard Paul Begin began to surface a few years before his death at age 74 on Feb. 14.
“He would do crossword puzzles and things like that and he began to not do those things. And it became evident that he was having some memory issues.”
Married, the father of two children, grandfather of six, and member of a prominent Woonsocket family, Richard had retired from a successful business career and was dividing his time between Rhode Island and Florida. For a while, Roger said, those close to him “didn’t make a big deal out of” the changes they observed in the man.
But eventually Roger made a suggestion to Richard’s wife, Judy.
“I said, ‘even though we all know what he’s dealing with, we should probably have him meet with a neurologist to actually put a name on it. I don’t know if it can be treated at this point, but let’s go to a doctor.’ ”
“He confirmed that what my brother had was Alzheimer’s,” an invariably fatal and incurable condition, Roger recalled.
What followed was a progression toward the end stages of the disease that left Richard increasingly frustrated and disturbed – and his family correspondingly stressed as his needs mounted. An ordeal no one should have to endure was underway.
According to the Alzheimer’s Association,an estimated 6.7 million Americans aged 65 and older are living with Alzheimer’s (although studies are limited, researchers believe that about 200,000 Americans ages 30 to 64 have younger-onset Alzheimer’s). Barring medical breakthroughs to cure, prevent or slow the disease, the association projects that by 2060, nearly 14 million Americans will have Alzheimer’s.
The latest statistics from the Rhode Island chapter reveal that 24,000 state residents aged 65 and older lived with Alzheimer’s in 2020. That number is projected to rise to 27,000 in the year 2025, an increase of 12.5%. In 2019, the last year that mortality data was available, 456 Rhode Islanders died of the disease.
Speaking with Ocean State Stories, Rhode Island chapter executive director Donna M. McGowan described the toll the disease exacts on family members and others who care for people living with Alzheimer’s – care for which they are not paid. There are an estimated 36,000 unpaid caregivers in Rhode Island, according to the local chapter.
“We know that 54.2% of our caregivers are suffering with a chronic disease because of the stress,” McGowan said. “And we also know that 41% of our caregivers have been diagnosed with depression and 11.5% of that population is living with a very severe physical condition. In other words, they’re not able to or won’t be able shortly to take care of their loved one because they’re too sick to do it.”
But until sickness incapacitates them, McGowan said, caregivers typically don’t give up.
“This caregiving ‘job’ in the world of dementia becomes 24/7,” she said. “And we think we can manage it. We want to save them, right? We want to do everything we can. We want to keep them at home, we don’t want them going anywhere else. We want them to have a really good quality of life and that’s just not the way this disease shakes out. So, at times, we at the association worry more about our caregivers.”
The Rhode Island chapter is there to help, McGowan said.
“We provide a plethora of help,” including a free helpline, 1-800-272-3900, that is answered around the clock, every day of the year.
“Maybe you’re calling because you want a list of neurologists or a list of geriatricians that specialize in dementia. We can give you that information. We’re a repository of information. On the other end of that phone are licensed clinicians, [professionals holding Master of Social Work degrees], and they’re licensed to counsel and walk you through any questions you may be having in the moment.
“So if you call at two o’clock in the morning and your loved one is starting to wander and you’re trying to pull them back in the house or they want to drive a car but they can’t drive – we can walk you through what to do, and what not to do, right? Even if that means you’ve got to call the police, you’ve got to call the hospital, whatever it is.”
Among the many other services the Alzheimer’s Association offers are a resource directory, a guide to how Alzheimer’s affects the brain, risk factors, risk-reduction measures, an explanation of early signs and symptoms of the disease, research updates, links to opportunities to participate in clinical trials, a list of treatment options, and connections to support groups.
As his Alzheimer’s advanced, Richard Begin’s emotions harshened and his needs mounted, increasing the stress on his family.
“When we were like ‘Richard you can’t do this’ when he wanted to do something and we resisted he could get quite angry,” his brother recalled. “And he was physically strong enough to be physical about it. In hindsight you look back and say, ‘it was a different person who was reacting.’ But that was one of the challenges.”
During a stay at Rhode Island Hospital, it was determined that Richard could no longer live at home. He was discharged to an assisted-living center that Roger describes as “a very, very nice private pay-for facility. Fortunately, he had the resources to be able to afford this. And they did a fine job with him.”
For a while, that is.
“His condition declined over a period of about five months or six months and they said that the kind of care he needed they were not able to provide. That’s not what they’re designed to do,” Roger said. “So they said, ‘he really needs to go into a nursing home.’ ”
Finding a quality home that would admit him proved problematic. The Begins could afford the best, but when some prospective placements saw Richard’s record and the medications he was taking to control his behaviors, they declined.
“We ended up having to go to a nursing home that was not our first choice,” Roger said. “It was a tough fit. They were not staffed professionally and number-wise to be able to deal with patients like this.”
Richard stayed at the home for two months as his family renewed their hunt for a superior home.
But as they would discover, they had exhausted their options.