'Slipping through my fingers': Young Greenville woman becomes mom's caregiver – a trend amid rise of early dementia

Around the time of her father’s sudden death, Ali Strother began noticing her mom wasn't herself.

She’d have intense mood swings and would cry many times a day.

Family thought it was depression over the loss of her husband, or the move from Greenville to Florida, or both. Just too many changes all at once, maybe.

But Strother felt something else was going on.

“I was talking to my relatives and saying something is wrong,” she told The Greenville News. “She is not OK.”

Soon, her mom, Jean, was papering the walls with multicolored sticky notes to help her remember things. And she’d become profoundly upset when she couldn’t find her keys or other objects.

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Eventually, Strother said, her mom was diagnosed with younger onset dementia. 

And with that, Strother became her mother’s caregiver.

No cure

Alzheimer's is a degenerative brain disease that eventually robs its victims of their memory and their ability to function normally and care for themselves, according to the Alzheimer’s Association.

It typically strikes about 1 in 10 people 65 and older and about a third of those over 85, the association reports. The early-onset form of the disease accounts for about 4 percent of cases.

Almost two-thirds of those with the disease are women. And African-Americans are about twice as likely as whites to get it.

Alzheimer’s afflicts 5.7 million Americans, 89,000 of them in South Carolina, according to the association. And it’s the sixth-leading cause of death in the state.

There is no cure and treatments have shown limited effectiveness.

And the number of people with younger onset Alzheimer’s and vascular dementia — defined as a diagnosis before age 65 — grew from 3,345 in 2004 to 5,094 in 2014, said Cindy Alewine, CEO of the association's South Carolina chapter.

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Outgoing and friendly

To see Ali and Jean Strother together, it's not immediately obvious that Jean, 64, is suffering from dementia.

She is outgoing and friendly and quick to start up a conversation.

“She never meets a stranger,” Ali said, smiling. “Wherever we go, she makes 1,001 friends.”

Despite her diagnosis, Jean is a social person who knows how to approach people and talk to them, said Lisa Naylor, a nurse practitioner at Greenville Health System’s Center for Success in Aging.

When they first met, Jean was in the mild stage and needed very little help from her daughter, Naylor said. But now she's in the moderate stage and needs more assistance with personal care, finances and medication management, she added.

Since moving back to Greenville, Strother and her mom walk the dogs each day around the neighborhood, spend evenings having dinner and watching TV in their suburban split-level home, and casually chat about the news of the day.    

They attend events put on by the local Alzheimer’s Association as well as meetings of its Connections support group.

And on weekends, they go to church concerts and on other outings.

Changing lives

But Strother said her mom forgets details about her past and other things, frequently repeats herself, and seems to be stuck in time.

She can no longer cook, for fear she'll forget to turn off the stove.

Once, Strother said, she was forced to race home from work because her mom had lost her keys while walking the family dachshund and couldn’t get back into the house.

“She was crying and couldn’t understand what was going on,” she said.

“I had to come home, try to help her look for the keys … and tell her everything was going to be OK and comfort her.”

And, in a move Strother confesses was especially tough, she had to take away her mom's credit cards and checkbook after she fell victim to phone scams.

Caught in the middle

Alzheimer's can be especially devastating when it affects people in their 50s and 60s, and sometimes even their 40s, Alewine said. 

They are so young they may still have children in high school and still be working, she said.

And younger patients can of course mean younger caregivers, and another set of challenges and heartbreaks.

More:Know the warning signs for Alzheimer's

“There is often a struggle between moving forward with their own lives and caring for their parents, and they’re trying to juggle both,” Alewine said. “Many ... do put their lives on hold in many ways."

The impact can be devastating and stressful.

“I spoke with a young caregiver in the past week who is caring for her mom, but her kids are still in school,” Alewine said.

"She wants to be there for them and for her mom. And of course, there’s the guilt that goes with that: I should be here, I should be there.”

A different life

Strother, 32, knows the challenges well. There are so many things she never thought she’d be dealing with at such a young age.

“My life is definitely very different than what I envisioned,” she said.

“I think I expected to be married with a family of four-legged kids by now, already completed graduate school, paid off student debt and be able to work and volunteer and go out of town without having to worry about anything except dogs, bills and friends."

But maintaining a normal social life would require more at-home care than Strother can afford.

Juggling responsibilities

Financial worries are often a big issue for caregivers, Alewine said.

“Sometimes caregivers have to miss a lot of work ... and may not be paid or have enough time to take off,” she said. “They also may be paying for home care.”

Medical costs can be another burden if the person being cared for is too young to be eligible for Medicare and doesn’t have insurance because they can no longer work, she said.

Strother, who has degrees in political science and experimental psychology from the University of South Carolina, had planned to attend law school.

Now, she said she’s glad she didn’t get her law degree because she’s not sure she’d have been able to practice enough to pay off school loans while also caring for her mother.

Instead, she became a paralegal.

Another change

Six months ago, Strother was told her mom would need round-the-clock care.

That meant she had to hire someone to care for her while she’s at work. And since at-home care isn’t covered by insurance, Strother is using her mom’s savings for that.

While her mom has long-term care insurance, it has a five-year cap, and Strother fears using it too soon and then being without it when it's most needed.

"Not only does the future seem somewhat bleak on occasion — especially financially, because this disease is so incredibly expensive — but the uncertainty of whether it might be hereditary is also a concern," she said.

'Safe and supported'

The Alzheimer's Association has been an invaluable resource for Strother as she manages her mother's diagnosis.

There, patients and caregivers can find information about the condition itself as well as coping tips, such as dealing with a patient who can no longer drive.

“Taking away someone’s car keys at any age is difficult,” Alewine said. “But when it’s your parent, it’s really hard.”

The association also offers support groups to help people cope with their emotions and get respite care so caregivers can get out of the house, which can often be difficult.

“Just to know that you’re not alone in what you’re going through ... that there’s someone there who understands, helps them to feel safe and supported,” Alewine said. 

Life before dementia

When Ali Strother was a child, her parents were avid runners and world travelers, visiting Hawaii, China and Italy, among other places.

Her mom enjoyed reading and crossword puzzles, and was talented at sewing and cross stitch, too.

Jean Strother has always loved dogs and music — especially Jimi Hendrix, Janis Joplin and Cat Stevens — and shopping. And she could be a bit of a smart aleck, her daughter said.

A devout Catholic, Jean sang in the church choir and still attends St. Mary Magdalene church regularly.

She's always been the one to volunteer at school, at church or elsewhere, and was there to cheer Ali on in whatever sport, concert or other activity she was involved in.

And she prepared dinner for the family every night after coming home from her job as a speech pathologist with Greenville County Schools, where she worked for 36 years.

Jean Strother says having dementia is an "ironic joke from God."

“There’s not much I can say about it,” she said. “I sort of laugh about it because (as a  speech pathologist) I’d be the person working professionally with someone who has dementia.”

There was never any history of dementia in the family, she said, though not a lot was known about it in her parents’ day.

And while she said she’s not worried about the future, she added, “I hope I go before it really gets bad."

A lot of loss 

She's aware of how difficult the situation is for her daughter, and said she feels bad for her.

“She lost her dad at 29 and then I was diagnosed ... with this,” she said. “She’s had a lot to deal with, being an only child and all and not having any other family close by.”

Ali said at this point, her closest friend is another caregiver who lives nearby. She's almost twice her age.

And, she said sadly, she has to call someone else when she needs motherly advice.

“It’s so easy to just get wrapped up in caring for somebody else that you lose yourself,” she said. “It takes a lot of brain space and a lot of energy.”

'Some really great years'

The standard decline with Alzheimer’s disease is eight to 15 years, Naylor said. With other types of dementia, progression is not as predictable, she said, though she expects Jean Strother will progress slower than if she’d had Alzheimer’s.

But it can seem more dramatic in those who are diagnosed before 65 because their condition worsens at a younger age, Naylor said.

Care is limited to managing the condition through medications and focusing on physical function and safety, such as getting GPS on the phone, so Jean can be tracked if she gets lost, or fall-alert buttons, she said.  

As hard as it is, Strother said she's managing to keep her head above water.

And she hopes she's doing all she can, with the help of the experts, so her mom, who is also a great friend, can be the best and happiest she can be as long as possible. 

"Once I was in college, we developed a great friendship that I see and feel slipping through my fingers like water more and more each day," she said. “That is really sad to me.

“At least I can say we had some really great years.”

November is Alzheimer's Awareness Month. To learn more, go to www.alz.org/sc.