What people with early dementia want you to know

An encounter with an elevator that happened to Laurie Waters shines a light on the daily plight faced by early-onset Alzheimer’s patients like her.

Waters, 57, was stuck in an elevator at an Alzheimer’s convention with others who were getting loud and excited – and the situation was getting to her.

“I was starting to get panicked, being in that enclosed space. And a gentleman said to me, ‘Well, what’s wrong with you? ‘” Waters recalled. “I said, ‘I actually live with Alzheimer’s disease.’ And this woman next to him said, ‘You know, that’s really mean to say that.’”

June is Alzheimer’s and Brain Awareness Month, and people like Waters are taking the opportunity to share what they wish others knew about living with dementia. .

Her elevator story illustrates two important lessons: young people can get dementia, and people with this condition would really rather not argue about their diagnosis or be told they don’t look like they have the Alzheimer’s disease.

“I look young, and even people in the Alzheimer’s community around him still don’t recognize the younger appearance,” said Waters, who lives in Clover, SC. ​​”It’s everywhere. I I’ve had doctors sitting there, who you’ve never met me before, look at me and say, ‘Are you sure you’ve been diagnosed with Alzheimer’s?’”

Deborah Jobe’s frustration comes from people talking about her like she’s not there.

“My husband and I will be in a room and people will ask her, you know, ‘She looks pretty good, how is she?’” said Jobe, 55, of St. Louis, who has an early form of dementia called posterior cortical atrophy.

“I’m like, ‘Hi! Here! You can ask me. It’s okay. I don’t mind,’” Jobe said with a laugh. “I’m still here. I’m still human. Please reach out to me and if I can’t answer I’m sure he will step in and help you.”

Waters and Jobe’s result – people with Alzheimer’s disease are still people.

“One of the common themes I hear over and over again is that how the diagnosis doesn’t define who they are,” said Monica Moreno, senior director of care and support at the Alzheimer’s Association, which works with families at an early stage in the wake. of their diagnosis.

“It is not uncommon that when people hear that someone has been diagnosed, they immediately think of the terminal stage of the disease, where an individual may not be communicative and may not necessarily be aware of their surroundings,” said said Moreno.

“And although we know that may be where the disease leads, in the early stages of the disease individuals still want to live meaningful lives and they know they still have things to contribute to society.” , she said.

First signs of trouble

Waters was diagnosed in 2017 when her husband noticed she wouldn’t stop working.

“I wouldn’t leave my office. I worked for a pharmaceutical company and used three computers in my office to review patient records,” Waters recalled. “And I could go through a patient’s chart in five to fifteen minutes.

“All of a sudden, it took me half an hour, 45 minutes to an hour just to break a record,” Waters continued. “My husband noticed that I didn’t even come out of my office for coffee, lunch or dinner. I worked 8-12 hours a day just to get the job done. And when I had to go to the office to train the people, I couldn’t even remember the names of some people I had known for years. It was horrible.

Jobe had to leave a high profile career as a customer success manager for global companies following his own diagnosis two years ago.

“I would be in front of governance boards, senior management, giving a presentation and I would find myself stopping,” Jobe said. “Literally the words were in my head but I couldn’t get them out or else the wrong words would come out. And so I was joking and saying, ‘You know, I’m sorry, let me step back, I didn’t drink enough coffee today.’”

She also struggled to keep up with new product updates, let alone explain them to customers.

“I just couldn’t understand,” Jobe said. “I’ve been in this industry for over 30 years and I just couldn’t understand. I would have to ask questions over and over again.”

The lives of the two women are different now, as they have adapted to their illness.

For example, Jobe’s husband uses plastic cards to help him around the house: “The dishes are clean” or “The stove is hot”. Jobe can’t drive, cook or ride a bike and often forgets to eat.

But she still enjoys new technologies, puns and artistic creation. She is still living her life.

“So don’t treat me any different unless I tell you to in some way — which is, OK, you know, slow down a little bit more,” Jobe said. “I’m still me. I’m still who I was before. Some days maybe it doesn’t show. But my heart and my soul are.”

patience and understanding

Jobe and Waters and other Alzheimer’s and dementia patients have a few other things they would like others to know, to help make their lives less frustrating.

Dementia sometimes causes Jobe to act in ways that don’t reflect his true personality, for example.

“I have bad days where I’m maybe more agitated or defensive or confused,” Jobe said. “My husband sees those days coming before me. I have what he calls crazy eyes, and it starts before I realize it’s happening.

“So maybe I’m doing something that’s not like me, but it’s not because I want to do it to hurt someone or get mad at someone,” Jobe continued. “Sometimes I can’t help it.”

People caring for someone with Alzheimer’s disease or dementia can also help by being very patient with them. Waters recalled a recent day when she couldn’t figure out how to scan a document in her entire life.

“Now you’re talking about someone working with three computer screens,” Waters said. “I sat in my office for almost an hour and a half trying to figure out how to scan this document into my computer. I couldn’t.

“People are looking at me and I’m like, now I have to explain to all these people who are looking at me like, ‘What do you mean you can’t scan a document? What’s wrong with you? it looks like you’ve got something wrong with you. 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, which really frustrates me,” Jobe said. “I’m like, give me a minute. Let me try to process it first, and then I can answer it. Or maybe I’ll need you to break it down into something a little simpler. “

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

“When the diagnosis is shared with others, it really tests relationships,” Moreno said. “And it’s not uncommon for friends to step back and not really engage with the person living with the disease in the family anymore. And there’s really no reason for that.

“A lot of times it’s just because they don’t understand the disease. They don’t understand the progression,” Moreno continued. “And if they’ve just taken some time to educate themselves, they can better understand the disease and how to support that person – to stay friends with them and engage with them and help them live the best life possible too. long as possible. they can.”

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