Dimitra Attwood started volunteering in care homes at the age of 11 before going on to spend her late teen and early adulthood years as an activities director. She’s also spent nearly all her adult life as one of the 11 million “sandwich caregivers” in the U.S., simultaneously caring for her parents and children.
In her Arizona childhood home, Dimitra and her husband, Kevin, navigate life as a multi-generational caregiving family with their three young children and Dimitra’s 75-year-old mother, Sandy. Not only is Sandy living with Lewy Body Dementia (LBD), but Dimitra’s 8-year-old twins have an extremely rare genetic disease.
In some capacity, caregiving is all Dimitra has ever known. Before moving Sandy back home with them earlier this year, Dimitra cared for her father, who lived with vascular dementia for nearly six years before passing away in 2021.
“I unexpectedly lost my sister and only sibling when I was 24 years old, became a mom at 26 years old, and, from there on, it’s just been finding myself and fighting myself as a mom and growing together through all of the stuff that’s been thrown at us,” she says.
Dimitra opens up about navigating motherhood, love, loss, and life as an around-the-clock sandwich caregiver:
On navigating life-changing diagnoses and becoming a multi-generational caregiving family:
By 2017, three members of the Attwood family received life-changing diagnoses.
Twins Anna and Samuel were diagnosed with ASMD (acid sphingomyelinase deficiency), known as Niemann-PickASM, Type B. Meanwhile, Dimitra’s mother and father both received dementia diagnoses. All three diagnoses came within six months of each other.
“Even after all these years, the thought of that hits really hard,” she says, thinking back to that year.
The journey to these diagnoses started in 2003 when Dimitra was a senior in high school, and Sandy was diagnosed with cervical dystonia after showing signs of tremors. It would be nearly 15 years until she received an official dementia diagnosis.
In hindsight, Dimitra says she noticed changes in her mom’s behaviors and their relationship dynamic long before the diagnosis; they all make sense now.
“We had always been super, super close, and a personality change happened. Then my mom started having hallucinations, and she was smelling certain things and hearing certain things,” Dimitra recalls.
Dimitra and her husband purchased Dimitra’s childhood home in 2012 to allow Sandy and Jerry to downsize into a smaller house. The hallucinations and paranoia began around that time, becoming so intense that Sandy insisted on moving at least three times before settling into a townhome in 2016, shortly before the diagnosis.
“They moved probably about three or four times within a few years after that because she kept smelling things or having problems with neighbors that she was hearing. And then she would blame other things on my dad. Come to find out, these are all symptoms of her dementia.”
In 2016, Dimitra decided it was time to “finally intervene” and began accompanying Sandy to appointments with her neurologist of nearly 15 years.
“I was feeling like I was getting a lot of back-and-forth messages from my mom, so I asked her if I could just tag along with her to be a part of the appointments,” she recalls. “Come to find out, it and all super old school, they didn’t even have a computer system. [Her doctor] was very knowledgeable about medications and stuff, but when I started asking about getting other resources or digging deeper about getting a diagnosis of dementia, there was a lot of pushback.”
She helped Sandy switch neurologists, which ushered in more than one diagnosis for their family.
“I decided to get my dad on board at the same time since I was already digging in with my mom,” she recalls.
They received Sandy and Jerry’s diagnosis at the same time, in the same doctor’s office. Jerry was diagnosed with vascular dementia; Sandy with early onset Alzheimer’s disease. Her official LBD diagnosis came later in 2020.
Jerry lived with the vascular dementia for nearly six years before passing in November 2021.
Thus, their family’s journey unfolded as a “care-partnering team,” as Dimitra refers to her family on her Instagram account under the handle @our_generation_of_care. She uses the account as an advocacy and awareness platform, chronicling the family’s journey of navigating these diagnoses and balancing life as multi-generational “sandwich” caregivers, highlighting the trials and triumphs they face.
On finding the right home and care for her parents:
Dimitra says she and her husband “tried their hardest” to allow her parents to age and go through their diagnosis at home, saying “the whole goal was to never place them in a care home.”
Dimitra is familiar with how challenging the adjustment can be because she spent much of her life working in care homes. But ultimately, she knew the right setting could help ease the weight of caregiving duties and allow her parents to enjoy a happy, fulfilled life.
“It was a very difficult choice for me to eventually move them out of their home,” she says of their decision in 2021 to relocate Sandy and Jerry into a small group home with just three other residents. Jerry passed away almost a year after moving into the group home.
“There was a lot of burnout involved with that situation,” she recalls of her dad’s passing. This was when they decided to move Sandy to another group home, this time with 10 residents. Dimitra sought an environment where her social and “caregiver-at-heart” mother would thrive after her recent loss and as her dementia progressed.
“I needed to find a place for her to feel needed and wanted because, as I said, that’s her through and through — a caregiver. She always wanted to sit with residents that were bed bound and like, rub their hands and like put lotion on their hands and stuff, and just like she felt like she was the caregiver in a lot of sense.”
With her parents in a care home, Dimitra says she was a “bit removed” from their care.
“Even though I was knowledgeable and educated on what to expect, what was happening, and how to advocate for her and my dad’s needs with them living in a care home, I still wasn’t doing the hands-on work. I didn’t see the progression on a daily basis.”
By the end of 2022, Dimitra and Kevin decided Sandy’s best care would be at home, back in the very house where she spent much of her life as a caregiver. They began a bedroom addition for Sandy, building off the same area that was once her in-home daycare. She moved back into the home in February 2023.
“I think it was always just like something that we’ve always wanted, that I’ve always wanted, especially because I know that I can give her the care that she needed,” she says.
On helping her children understand dementia and adjust to life as part of a multi-generational caregiving family:
“It’s been really difficult, I won’t sugarcoat it,” Dimitra says of the adjustment to Sandy living in their home with her three young children.
She says it was much easier to help them process and understand what they were witnessing as their grandparents’ dementia progressed when they lived in separate homes.
“[The kids] were a bit removed from it, and it was easier to pick and choose what parts we were able to show them, easier to help provide memories and moments that were more joyful and happy,” she says.
The processing and separation have become “more difficult” with Sandy living in their home.
“When we got the diagnosis, I went through the anger, the sadness, all of that, to be able to cope and process what was happening, even as an adult,” she recalls. “I see my kids going through the same exact thing that I went through at the beginning; right now, there’s a lot of anger and resentment.”
Dimitra also notices that her kids crave one-on-one time with their parents.
“It’s very hard to share that time with her and us,” she admits. “You have all of these monuments, moments, and milestones that you pictured were going to happen in a certain way; then they don’t happen and pass by.”
She reminds other caregivers and families that they can’t dwell on this.
“If you do, you’re just gonna be continuously stuck in this cycle of anger and resentment that just tears you apart and takes everyone else apart around you.”
That’s why they are mindful of incorporating activities that involve all three children and Sandy, including evenings spent in the kitchen together.
“Just like you would want to teach your kids how to be domestic and learn more about themselves, we’re really incorporating a lot of those same tools and functions with my mom, and so that has been nice.”
After all, Dimitra says, being raised in a multi-generational caregiving home has ultimately taught her young children wisdom and strength.
“I hate what they have to go through to build this wisdom, but at the same time, it’s truly building the people they are going to be and are right now.”
She takes a moment to specifically recognize her oldest son, 13-year-old Anthony, who she says has been a “sandwich caregiver in his own right” between his brother and sister and his grandparents.
“He has just taken on this role, picked it up, and ran with it in such a beautiful, courageous, and brave way,” she says. “It is so inspiring to me as a parent to see as they grow older. It was never our vision for them, but you also have these extra helping hands that can be part of this.”
On making the most out of each day:
When Dimitra first moved Sandy back into their home, she says a typical day would’ve included activities “all day long.” But she sees how the move has helped Sandy find “a sense of being able to breathe and let go.”
The trick to balancing a schedule for her three children and mother with dementia, Dimitra says, is being “flexible all the way, every day and every week.”
In the Attwood home, each day is different. Kevin, who works a hybrid schedule, takes the kids to school on the days he’s working from home. On the days he’s in the office, Dimitra and Sandy take over drop-off duty, which Dimitra uses as a chance to get her mom out of the house.
“I use shower days or the days I have to take the kids to do something as our errand days because I’ve gotten her out of the house, and she’s got that momentum in her to do something different.
“I absolutely utilize those days to get the things I want to get done outside of the house or take her to do something fun, just so that she can get a different view.”
But as Sandy’s dementia has progressed, Dimitra says they only have a few hours of her at her best before sundowning sets in.
“Things have changed quite a bit in her energy, so we have a window between when she wakes up until, maybe noon, sometimes 2 p.m., and then after that, she sundowns pretty hard and starts getting a lot of hallucinations and stuff.”
The family has learned collective coping skills for Sandy’s sundowning spells. They monitor her pacing and present calming activities to help distract her when the evening hours hit.
“We try our best not to let the sundowning control her or us,” Dimitra says. “Part of that comes along with coping for our kids, too, like helping them understand her confusion and agitation and what to do to soothe it. And that’s such a lesson for them and themselves and stuff; if they’re feeling agitated and confused and not knowing what to do with themselves, how can they find ways to help that?”
Dimitra says how they help ease Sandy’s sundowning depends on what conversations or activities were happening before the sundowning hits.
“She’s still so much in reality here with us that she mixes in her sundowning ‘reality’ with what’s really happening in real life.”
Some of this confusion can trickle well into the night and her sleep. Dimitra says Sandy often wakes up thinking she’s in a care home.
“She wakes up scared, and I have to remind her that you know she’s home and that she’s okay and comfort her in that way,” she says. “That just goes to shell that even in dementia, they can still have traumas; they can still have these things that stick with them.”
On finding purpose in the journey:
For Dimitra, moving forward with these diagnoses meant letting go, and “finding pieces of joy to hold onto” is the key to survival.
“First and foremost, I think the biggest guiding light to getting through all of this is just finally hitting a point of being tired of all of the grief, all the anger, the resentment towards people, family, and the situation.”
She says the caregiving experience has helped her value life in such a different way.
“It really builds you as a person; I think one of the biggest things that I’ve always said to a lot of people is not only to give yourself grace but also that there are truly gifts in all of the lessons given to us.”
She says that “unraveling her life to care for someone in such a proper, dignified way while also really digging to the root of your own life” is part of the “gift” a caregiving experience offers.
“I had to dig deep within myself and learn who I was, unravel all of my traumas and generational traumas not to be scared of my parent’s dementia and their deaths, not to be scared of the things that I was missing out on, and what I thought life would have been like; to learn who I was a little bit deeper and not be scared of myself. I needed to heal and unravel all of that to care for my mom in the way I wanted to care for her.”
Dimitra believes this self-work and discovery was part of a greater purpose. “It allows me to provide a more stable and healthier environment, not only for my mom but for my entire family as we navigate this.”