These four people have Alzheimer’s disease. Here’s what they want you to know.
It was a Friday. Myriam Marquez was driving home from her job as a public defender for the Skagit County Public Defender’s Office in Mt. Vernon, Washington, when she came to a four-way stop: “all of a sudden, I didn’t know where I was, and I didn’t know whether to turn right, left or go straight,” she vividly remembers. Hysterical, she picked up her cellphone to dial her daughter and explain the predicament. She only lived a half mile away. Once she composed herself, she realized where she was. “But at that moment,” says Marquez, 68, of Seattle, “I knew I had Alzheimer’s disease.”
After a battery of tests, including MRIs, PET scans, blood work and cognitive evaluations, the doctors told Marquez her diagnosis was inconclusive. “But I knew I had it, and no one would believe me,” she says. Marquez’s father was one of 13 siblings, at least five of whom had symptoms related to Alzheimer’s when they died. Two of her own four siblings had already been diagnosed with the disease. The strong family history prompted a DNA test one year later, and at age 63, her suspicions of early-onset Alzheimer’s disease were confirmed.
The disease often labeled as an “old” person’s disease affects approximately 5.1 million Americans over 65, and roughly 200,000 people under 65 have the early-onset type of Alzheimer’s disease. One in 9 people older than 65 has Alzheimer’s disease. The number of Americans 65 and up with the disease and other dementias is expected to increase 40 percent to 7.1 million by 2025, according to the Alzheimer’s Association’s 2015 Alzheimer’s Disease Facts and Figures Report.
The report also indicates that 42 percent of residents in assisted living facilities had Alzheimer’s disease and other dementias – such as vascular dementia, Lewy body dementia, mixed dementia, Parkinson’s disease, frontotemporal dementia, Creutzfeldt-Jakob disease, normal pressure hydrocephalus, Huntington’s disease and Wernicke-Korsakoff Syndrome – in 2010. However, the median cost for basic services in an assisted living facility is $3,500 per month, or $42,000 per year, according to the report. Nursing homes aren’t much better at $240 per day or $87,600 per year.
Marquez, now 68, says because she retired early, she doesn’t have the funds to go into assisted living: “When I get to a point when I can no longer take care of myself, I’ll probably wind up in a group home, and I will have friends who will do the research to find where I’ll be safe and cared for,” she says. “And I know my daughters will come and check once in a while to make sure I’m safe.”
For now, she’s enjoying life to the fullest, socializing with peers in her apartment building. Marquez is also an advocate for the disease and participates in speaking engagements hosted by the Alzheimer’s Association to raise awareness.
Much like Marquez, being diagnosed with early-onset Alzheimer’s disease didn’t come as a surprise to Gordon Broom, who was diagnosed in 2007 at age 55. Still, he remembers when he and his partner, Larry Jordan, who both live in West Palm Beach, Florida, were given the news: “I was very upset, nervous and depressed,” Broom, now 64, says. His young diagnosis forced him into early retirement from social work in the Health Care for Homeless Veterans Program at the Department of Veterans Affairs.
“Day to day, Gordon will sometimes wonder if I said the right thing, and I’m not quite sure if what I said was misunderstood,” Jordan says. But for the most part, the two are like any other couple. They go on social excursions such as hiking, lunches and dinners, or catch a local show. “You can enjoy life even with the disease,” Broom adds. “My biggest worry? That I end up in a nursing home and not able to enjoy the rest of my life in retirement.”
Occasionally, though, harsh reminders of the disease’s presence flair up. It happens when Broom becomes frightened when Jordan suddenly enters the bedroom, for example. To avoid that, Jordan learned to turn on a light before he enters the room – it lets Broom know something is about to change in the environment and puts him at ease. “The room is set up so I can switch on a light that will alert him that something is about to change, and he’ll look up at the light and not be startled,” Jordan says. “It’s just a matter of learning those things through other people at support groups that smooth the day-to-day activities.”
Pat Etienne, 82, of Columbia, Missouri, knows all about the daily challenges faced by caregivers like Jordan. She’s the primary caregiver for her older brother, Bobby, who experienced diabetes complications severe enough to lead to a type of late-stage dementia known as vascular dementia. It occurs when reduced blood flow deprives brain cells of oxygen and nutrients. Etienne also faces a diagnosis of her own: mild cognitive impairment.
Mild cognitive impairment – or MCI – is the fine line between a person’s normal memory or thinking and dementia. It’s diagnosed when a person experiences significant changes in memory and thinking that interfere with daily functioning, such as writing a check or becoming lost while driving.
Etienne says she wasn’t surprised by the diagnosis; after all, she was 77 when she was diagnosed in 2011 – and when you’re at that age, you’re more likely to expect trouble with memory.
Now, she admits accepting her diagnosis has been the most difficult part of life with MCI: “That’s been a hard thing for me to do,” she explains. “To recognize I can’t perform at the level I was accustomed to. There’s a lot of pride with accepting this diagnosis. When your memory is diminished, you associate it with your self-worth and intelligence and get it all confused.”
Etienne says she knows she doesn’t make sense sometimes when she speaks to others. “But I am still outgoing, and I want to be considered or included in the conversation. I want to be listened to even though I may be rambling on,” she says, adding that her family’s and friends’ challenge is to accept that while her functioning has changed, her heart hasn’t.
She offers this advice to others living with a cognitive impairment: “There’s still so much you can do if you’re living for the best you today and not trying to measure up to what you did 25 years ago or even five years ago.”
Bob O’Keefe, 74, knows he can rely on his large family for support with his disease, or when he just wants to speak to his adult kids about their life and what’s going on in his. He doesn’t have to ask them not to go out of their way, he says. “They just seem to know,” he says.
O’Keefe’s father and older brother passed away with symptoms of dementia. And soon after his 2007 retirement from the insurance business, when he was 67, he found himself losing focus, leaving chunks out of stories that he was telling and repeating himself. His early-onset diagnosis shocked his wife and seven children.
“I told them I wanted them to treat me as they’ve always treated me, to not expect less of me in terms of my interaction with them and that life would go on and I would find a way – as I have in many previous instances – to deal with the reality of my condition,” says O’Keefe, who lives in North Waterboro, Maine, with his wife.
These days, O’Keefe’s biggest fear is what will happen if and when he reaches a point where he can’t function as he can today. “Will I need to go into a nursing home? Will I be able to stay at home? It’s a great wish of both my wife and I that I will be able to stay home with her support,” he says.
Since his diagnosis, O’Keefe has begun preparing for the future by researching the financial and legal plans his family will need when he’s unable to make important decisions, such as seeking in-home care assistance or adult day care facilities. There’s no way to slow or stop Alzheimer’s, but O’Keefe stands with others who ask to be treated the same as they were pre-diagnosis: “I don’t want to be treated in any extraordinary way. I want to be remembered for who I am, and if I change – and I certainly will – I want them to continue to treat me the way they always have, which is for who I am,” O’Keefe says.