Never forgotten

Attendees at a recent gathering hosted by the Alzheimer’s Association of Greater Richmond.
Jeff Baldwin tells people his grandmother died twice.

Once when she was diagnosed with Alzheimer’s, and again when her body finally shut down after five years of struggling with the disease.

“My grandmother at the end was not who she was during her entire life,” Baldwin said. “Not that she became the disease, but it changes you.”

Baldwin, who began working with the Alzheimer’s Association of Greater Richmond as communications director three years after his grandmother’s diagnosis, said his family fought against taking his grandmother to the doctor for fear of the Alzheimer’s diagnosis they knew was coming, before finally relenting and doing so.

They are not the only ones. There are an estimated 26,000 people with Alzheimer’s disease living in the metro Richmond area, according to the Alzheimer’s Association of Greater Richmond. Nationally, 5.4 million people suffer from Alzheimer’s.

“This is not a disease that is only going to impact the person who has been diagnosed,” said Tina Thomas, director of programs and services for the Alzheimer’s Association of Greater Richmond. “It is going to change the dynamics of your family and the way you interact.”

Jessica F. Samet, who also had a family member with Alzheimer’s, serves as a care consultant in the Henrico and surrounding areas, working with families to develop plans and connect them to resources. She has hosted an Alzheimer’s support group at Mount Vernon Baptist Church in Henrico for 10 years,

“I was on the phone with a lady who needed to find someone to hire to help her sister bathe,” Samet said, citing an example of the type of work she does.

Eight hundred thirty-five people living in the greater Richmond area received care consultation from someone like Samet in the last year, according to the Alzheimer’s Association’s 2016 year-end impact statement.

Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. There is no cure for the disease, a neurodegenerative disease that gets worse with time. The goals of drug treatment and other supplements are to slow the progression of the disease and manage symptoms.

During the final phase of the disease, which can last from a few months to several years, the person can become totally disabled. Death usually occurs from an infection or organ failure, according to the National Institute on Aging.

“My grandmother was afraid to go to sleep at night,” Baldwin said. “And that’s the ugliness of the end stage, and until you see that, you really do just think it's memory issues.”

Common misunderstandings
Society’s perception of Alzheimer’s has perpetuated misunderstandings surrounding the disease, Thomas said.

“When people think about Alzheimer’s disease, they picture an older person, in a nursing home, in a wheelchair or in a bed,” she said. “They don’t picture the person in the cubicle next to them, or across the desk.”

Nationwide, there are about 200,000 cases of younger onset (a person who is diagnosed with the disease before age 65), according to Alzheimer’s Association data.

“They’re in their 40s, they’ve got kids in elementary school,” Samet said of the people she helps who are younger onset. “It’s devastating.”

Kate Barrett, who owns a psychotherapy practice in Henrico that provides services for people 50 and older and specializes in aging transition, caregivers and the early stages of dementia, said the lack of societal understanding surrounding dementia and Alzheimer’s is the result of stigmatization.

“There is still unfortunately a fair amount of stigma,” Barrett said. “People don’t want to self-report that they have a memory problem.”

Kalista Pepper, a 16-year-old junior at Glen Allen High School whose great grandmother was diagnosed with Alzheimer's and had the disease for more than 18 years, said she is frustrated by the lack of understanding society has when it comes to Alzheimer’s.

“If I were to go up to any person at my school and ask them what they thought Alzheimer's was, they would say that it’s something that happens to old people and they forget stuff,” Pepper said. “It is so much more than that – it is forgetting your life, forgetting how to do the simple things that you take for granted.

“She couldn’t blink or eat,” Pepper said of her great-grandmother. “She ended up being fed through a tube and my grandfather was there through it all.”

Pepper grew up watching her grandfather care for her great-grandmother, his mother.

“Growing up, I didn’t have a dad,” Pepper said. “Grandfather took those spots. He was a rock for everyone for years.”

And then last year, Pepper’s grandfather was diagnosed with Alzheimer's. Now, when Pepper’s grandfather does remember her, “he sees me as five years old and it’s rough,” Pepper said.

‘A shell of a person’
Watching her grandfather’s health and memory deteriorate drove her to start an Alzheimer’s awareness group at her high school with her principal, who also has a family member with Alzheimer’s, to fund-raise, increase community involvement and educate people, Pepper said.

Pepper’s grandfather, who lives with and is cared for by his wife, hasn’t been willing to go anywhere or do many things during the day since he was given his Alzheimer’s diagnosis.

He goes to adult day care so Pepper’s grandmother can have a break from caregiving. He thinks he’s volunteering while he’s there, Pepper said.

“Adult day care can keep people out of nursing homes for a long time, and it's great respite for spouses and children,” Barrett said. Barrett also said adult day care provides safety, security, belonging, socialization and cognitive stimulation for the people with dementia.

In Henrico, Barrett said she recommends two adult care places in particular: Circle Care Adult Day Services and A Grace Place, so that caregivers can get time to recharge.

“The spouse then can become quite lonely and feel very isolated,” Barrett said. “The caregiver is just devastatingly aware of what’s going on now, of the differences and the caregiver cannot help but imagine what’s coming next.”

Barrett described the way people see their loved one with dementia or Alzheimer’s as “split-screen” vision.

“They see what they’re looking at but in their mind’s eye they also have this image of [their] husband who was a lawyer or a professor or a physician,” Barrett said. “If Alzheimer's were just memory it would be a sad disease but really it wouldn’t be that bad. It is that total loss of self and personality.”

The split-screen vision as Barrett described it has three displays: images of who the loved-ones with dementia used to be, who they are now and who they soon will become as the disease continues to take over.

For Pepper, this split-screen vision keeps her up at night.

“You go to bed every single night thinking about how someone you love more than anyone in the world is slipping away,” Pepper said. “The person you used to love is a shell of a person.”
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June 2017
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West Broad Village’s Rock & Roll Summer outdoor concert series continues at “The Pad,” adjacent to Aloft Hotel at 3939 Duckling Dr., from 7 p.m. to 10 p.m. Totally Random, an 80s cover band, will perform. The concert is free and open to the public. Several parking decks feature free parking. The series continues every other Friday through August. For details, visit http://www.shopwestbroadvillage.com or www.facebook.com/WestBroadVillageShopping. Full text

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