People with early-onset dementia want to know what you know

The elevator meeting with Lori Waters highlights the day-to-day challenges of early-onset Alzheimer’s patients like her.

Waters, 57, was stuck in an elevator at an Alzheimer’s convention and was upset with other people – and the situation was getting closer.

“While I was in that enclosed space, I started to panic. Then a gentleman said, ‘What happened to you?’ I said, “I’m actually living with Alzheimer’s disease.” The woman next to him said, “You know, that’s a really bad word.”

June is a month of awareness about Alzheimer’s and the brain, and people like Waters take the opportunity to share with others what it’s like to live with dementia.

His elevator story points to two important lessons – young people may have dementia, and people with this condition don’t really discuss the diagnosis or say they don’t seem to have Alzheimer’s disease.

“I look young, and even the Alzheimer’s community around me still doesn’t know my age,” says Waters, SC, who lives in Clover. “It’s everywhere. I had doctors sitting there. If you haven’t seen me before, just look at me.” Do you believe you have been diagnosed with Alzheimer’s? “

Deborah Job is impressed by the people who talk about her as if she were not there.

“My husband and I are in the same room, and people ask him, ‘You know, he looks great, how is he?'”

“I said,‘ Hello! Right here! You can ask me. OK. I’m not against it, ”Job laughed.“ I’m still here. I am still human. Please contact me, if I can’t answer, I hope he will come in and help. “

The conclusion of Waters and Job is that people with Alzheimer’s disease are still human.

“One of the common topics I hear over and over again is how a diagnosis doesn’t identify them,” said Monica Moreno, senior director of care and support for the Alzheimer’s Association, who worked with early-stage families. their diagnosis.

“When people hear that someone has been diagnosed, they can immediately think about the final stage of the disease, where the person is not communicative and may not know their environment,” Moreno said.

“In the early stages of the disease, people still want a meaningful life and they know they still have something to contribute to society,” he said.

The first signs of trouble

Waters received her diagnosis in 2017, when she noticed that her husband would not quit her job.

“I wouldn’t leave my office. I used to work for a pharmaceutical company and had three computers registered in my office,” Waters said. “I could fly a patient record in 5-15 minutes.

“It suddenly took me half an hour, 45 minutes to an hour, to break a record,” Waters continued. “My husband noticed that I didn’t leave my office for coffee or lunch or dinner. I worked 8-12 hours a day just to finish work. Then when I had to go to the office to train people, I couldn’t remember the names of some people I had known for years.

Jobe was forced to quit his high-profile career as a customer success manager at global companies after his diagnosis two years ago.

“I would be in front of the boards, the executive management to make a presentation and I would just stop,” Job said. “Literally, the words were in my brain, but I couldn’t get them out, or the wrong words would come out. Then I would jokingly say, ‘You know, I’m sorry, take a step back.’ Again, I didn’t drink coffee today.” “

He also noticed that he was struggling to stay informed of new product updates, refusing to explain them to customers.

“I couldn’t understand it,” Job said. “I’ve been in this industry for over 30 years, but I didn’t understand it. I had to ask questions over and over again.”

The lives of both women are different now because they are used to the disease.

For example, Job’s husband helps at home using laminate flooring – “Clean the dishes” or “Hot oven.” Jobe can’t drive, cook or ride a bike, and often forgets to eat.

But he still loves new technologies and the creation of word games and art. He is still living his life.

“So don’t treat me any differently until I ask you somehow, in other words, okay, you know, a little faster,” Job said. “I’m still me. I’ll be what I used to be. Some days I may not be able to see. But neither my heart nor my soul.”

Patience and understanding

Job and Waters and other Alzheimer’s and dementia patients have a few other things they want others to know to help make their lives less irritating.

Dementia sometimes leads Job to actions that do not reflect his true face, for example.

“If I have bad days, I may be more nervous, defensive, or confused,” Job said. “My husband sees these days before me. I understand what he calls his crazy eyes and it starts before he realizes it’s happening.

“So maybe I’m doing something that isn’t typical of me, but it’s not because I want to hurt someone or get angry at someone,” Job continued. Sometimes I can’t help it, ”he said.

People with Alzheimer’s or dementia can also be very patient and help them. Waters recalled a recent day when he couldn’t figure out how to scan a document.

“Now you’re talking about someone who works with three computer screens,” Waters said. “I sat in my office for almost an hour and a half, and I understood how to scan this document on my computer. I couldn’t do that.

“People are looking at me, and I have to explain to everyone who is looking at me, ‘What do you mean you can’t scan a document?’ What is wrong with you? Looks like you have something. You don’t look like you have Alzheimer’s, are you crazy? ” Waters continued.

Job agrees.

“I don’t think as fast as I used to, it makes me very sad,” Job said. “I’m going to give you a minute. I’ll try to work it out first, and then I’ll be able to answer it. Or maybe I should break it down into something a little simpler.”

The best way to help someone with Alzheimer’s or dementia is to stay in touch and learn all they can about the disease, Moreno said.

“When a diagnosis is shared with others, it really creates a test relationship,” Moreno said. “It’s rare for friends to step back and not have a relationship with someone who has the disease in the family. There’s really no reason for that.

“Many times they don’t understand the disease. They don’t understand the progress,” Moreno continued. “If they take the time to train themselves, they will be able to better understand the disease and how to support the person – befriend them, work with them and help them live a better life. they get it. ”

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