Woman Gives Up Dream Job at 29 After Mom's Tiredness Is Actually Dementia

Picture this: You're in your 20s, you've moved to your dream city, you're a few months in to your dream job.

Then, one day you get a call from a family friend, and you end up giving everything up to fly home and become a full-time dementia caregiver to your grandmother and your mother.

This is what happened to Jacquelyn Revere, now 36, from Los Angeles.

"I was living in New York city at the time," she recalls. "I was 29 and I had just got a job as a TV writing assistant, a field I had been working towards for so long. I was just starting to meet the right people and witness the fruits of my labors, and then everything changed."

Dementia is often thought of as a condition that affects us much later in life, 65 and upwards, but there has been a recent increase in under-65s being diagnosed with the condition, according to a 2020 Blue Cross Blue Shield Association report, leaving younger family members to care for them rather than an overstretched and costly medical system.

While most of the 5.3 million Americans who are living with Alzheimer's or other types of dementia are over 65, some 200,000 are younger, and develop serious memory and thinking problems much earlier than expected, according to The New York Times.

"Currently, there are more than 11 million Americans caring for some living with Alzheimer's disease or another dementia," Monica Moreno, senior director of care and support at the Alzheimer's Association told Newsweek. "It is estimated about one in six are millennial caregivers between the ages of 18-34. Forty-four percent are providing care to a grandparent, while 26 percent do so for a parent."

With increased media attention on both dementia and Alzheimer's, there can be some confusion around the two. "Dementia is not a specific disease. It's an umbrella term describing cognitive decline serious enough to interfere with daily living", explained Moreno.

Dementia can be caused by many conditions, including Alzheimer's which is a specific disease and the most common cause of dementia, accounting for 60 to 80 percent of cases, according to Moreno. "Other common types of dementia include vascular dementia, mixed dementia (more than one cause of dementia occurring simultaneously), Lewy body dementia, Parkinson's disease and Huntington's disease," said Moreno. Some conditions that can cause dementia-like symptoms are even treatable, "including depression, sleep problems, side effects from medication and certain vitamin deficiencies," she added.

The average life expectancy following an Alzheimer's diagnosis is four to eight years, but can be as long as 20 years, according to Moreno. "During the course of the disease, caregiving needs for these individuals escalate and become more intensive," she said.

'I Thought She Was Just Tired, But It Should Have Been A Big Red Flag'

Jacquelyn remembers the day she got a call from a family friend back in Los Angeles telling her there had been a carbon monoxide leak in the house where her mother lived as a carer for her grandmother, who was diagnosed with dementia in 2014.

"Hindsight is 20/20" says Jacquelyn. "When I got home I began to see that things had not been going so well with my mother Lynn, and my grandmother Joyce."

"The mortgage hadn't been paid in two months, there was spoiled food in the kitchen, and the house was just not as neat as I remember it being. It made me think of a recent time my mother had come to visit me in New York and she couldn't keep hold of her subway card, and my mother was not the kind of person to lose things. That should have been a big red flag, but at the time I thought maybe she was just tired, maybe she has a lot on her plate looking after my grandmother".

Alzheimer's disease typically slowly progresses in three stages: mild (early stage), moderate (middle stage) and severe (late stage). The early stages can often be explained away.

"In the early stages of Alzheimer's disease, most people are able to function on their own and may continue to live independently," said Moreno. "The person may still be able to drive and can participate in favorite activities. However, they may need medication reminders or help with remembering appointments."

Middle-stage Alzheimer's is usually the longest and can last for many years. "Individuals in this stage can often still participate in conversations, activities and their daily care, like dressing, bathing and using the toilet however, they will need additional support over time," Moreno told Newsweek. In the late stage of Alzheimer's, people will experience major declines in their ability to respond to their environment or carry a conversation, and will eventually be dependent on others for all of their care.

What Is Life Like for a Young Carer?

Younger carers are less likely to have families or partners of their own. Their main support system often involves their older family members, often parents. When these important figures develop dementia symptoms and require looking after, these young carers must look after their parents and watch their support system deteriorate.

"Younger Alzheimer's and dementia caregivers face unique challenges," said Moreno. "Many of these individuals are taking on caregiving responsibilities at a time when they are completing their education, building a career or starting a family. Younger caregivers have reported needing to make adjustments in their careers due to caregiving responsibilities, including turning down promotions, scaling back work hours or even leaving their jobs."

"Moving home to look after my mother and grandmother was not a choice, they needed me," said Jacquelyn. "I took a 21-day period of leave and flew home from New York to Los Angeles, and I just never went back apart from one trip to pack up my things."

"I did resent it, of course I did," she said. "It was already an impossible situation, but on top of that I had just started this new job in exactly the field I wanted, and as soon as I started that was taken away. I loved living in New York and having to leave a life I had always wanted was really hurtful."

Due to the relative unpredictability in behavior of someone with dementia, every day was different for Jacquelyn.

"I was there to cater for whatever was going on with them, if they wanted to wake up at 5 a.m. then I did too, to make her breakfast, and watch her to make sure there was no tampering with stoves, and in my grandmother's case, I had to mitigate her aggression because she was in the late and very confused stages.

"On top of that I was also taking care of my mom, and their relationship was not good. There was a lot of history, so on top of the symptoms of Alzheimer's, I was also dealing with a lot of buried family trauma and tension while still figuring life out in my 20s."

Looking after herself wasn't a priority for Jacquelyn. "I wasn't able to look after myself," she said. "I don't think I had to tools to at that stage in my life. I knew I was sad. I knew I was depressed sometimes but there were so few people my age that I could identify with. When I hit rock bottom, a few of my friends pulled together and paid for a few months of therapy for me which helped me realize my situation wasn't fair, and it's not ok that there is such little support for young people who have to give up their whole lives."

How Much Does Being a Caregiver Cost?

"When I became a carer at 29, there was no state or affordable help available," said Jacquelyn. "That's one of the many problems that we have here in the States."

Memory care typically costs 20 to 30 percent more than assisted living, and is not entirely covered by Medicare, which covers citizens and residents who are 65 or older, according to memorycare.com.

"Get a diagnosis as soon as you can," advised Jacquelyn. "You can't move forward with any necessary paper work without a diagnosis, and these processes can take time."

Alzheimer's is a progressive disease, and the care an individual needs will increase over time so it's important to think about payment options. According to the Alzheimer's Association, the lifetime cost of care for a person living with Alzheimer's or another form of dementia is $377,621, with 70 percent of these borne by family caregivers in the forms of unpaid caregiving and out-of-pocket expenses for items ranging from medication to food for the person living with dementia. In 2021, total payments for all individuals living with Alzheimer's disease or other types of dementia in the U.S were estimated at $321 billion.

Below are the median costs for long-term services 2022, according to the Alzheimer's Society citing a survey from insurer Genworth (This includes home- and community-based services, assisted living and nursing home care):

• Home care: A paid non-medical home health aide is $28.64 per hour and $1,145 per week (assuming 40 hours of care per week).
• Adult day services: $83 per day.
• Assisted living facilities: $4,774 per month or $57,289 per year.
• Private room in a nursing home: $315 per day or $115,007 per year.
• Semi-private room in a nursing home: $276 per day or $100,679 per year.

Jacquelyn's mother was too young to qualify for Medicare at 59, and although her grandmother had a pension, she paid out of pocket for her care. After her grandmother died, Jacquelyn was forced to rent rooms out in her mother's home to cover the cost of her care. "The difficult thing with dementia is, you can't just hire anyone to look after the sufferer," Jacquelyn said. "They have to have dementia training to know how to approach an agitated person and step into their world, which is incredibly expensive, so often it really is up to the caregivers. We're the ones who are taking the load off medical services by giving up our lives."

Jacquelyn's mother died in March 2022. She is now using her six years of experience to help others going through similar situations.

"This is going to hurt," she said. "But you just have to ride the wave. Your life will change, friendships might fail, but I urge anyone in that position to find a community of people that will understand you, without you having to explain".

She has also been able to resurrect her writing career.

"I recently got in to a TV mentorship where they chose 20 people out of 900 applicants. It's really nice that something I was working so hard at prior to taking care of my mom has not been completely lost, but equally, I now have this intense passion for caregivers and making them feel less alone."