One of Kris McCabe’s favorite parts of her day as her grandmother’s caregiver is the time they spend sitting in their Chicago apartment playing “hairstylist,” sitting as her “Grams” brushes her hair.
In one season of her life, her grandmother was a hairdresser. She also used to make floral arrangements. She worked at a stationary store, her brother’s towing company, a racetrack, and, in her longest gig, as a waitress at an Italian diner in Ozone Park, Queens.
Mary Padovani was a lot of things before she was diagnosed with Alzheimer’s disease. But Kris still sees glimmers of each persona within her grandmother, despite her seven-year battle since the diagnosis.
“I’ll always label her as a badass Italian New Yorker because I think it solidifies her to her core,” Kris says with a wide smile.
Mary is “sassy, speaks her mind, and goes with the flow.” Kris remembers her as a giver, the one wrangling her cousins and supporting family, the “go-to person always helping everybody else out.” Married and divorced by 22, Padovani never remarried — her granddaughter thinks that’s one of the best things about her.
“That’s another real component of Grams’ being; she’s always just been this single, independent woman my entire life,” she says. “I have been fortunate, and I nurture her for who she is, and I’m thankful that a lot of who she is has remained intact. I try to keep her spunk alive, and I try to keep her going in a way that she would have wanted.”
As Mary’s caregiver, Kris, 35, spends each day doing exactly that — keeping her Grams’ spunk alive and keeping her going through the everyday challenges brought by Alzheimer’s disease. The rest of her days are spent keeping her own spunk alive, growing into her identity as a caregiver, and discovering purpose in the journey.
She opens up about their journey as a family and a day in her life as her grandmother’s caregiver:
On the diagnosis and finding a home for Mary
After suffering a stroke in 2007 and losing her speech for six months, Mary’s doctor forewarned her family of dementia. But her speech returned, as did life as usual for the family. They moved Mary into an in-law suite with Kris’ sister so she could continue living independently while the family kept an eye on her. The “odd” behavior began in 2012 and escalated in the years following.
“With her being the matriarch and such a badass woman, it was really hard for my family to get the information that we needed. She always wanted to avoid the doctors and never really wanted any of us to go with her,” she says. “But the behaviors were no longer silly things like her forgetting something — it was getting dangerous.”
Kris’ sister welcomed a baby in 2014, but Mary left the infant unattended on the countertop while babysitting. She started getting into car accidents. In November 2016, Mary wandered out of the house without shoes and a jacket into a frigid Midwestern snowstorm.
“My sister and I decided that we had to call 911 because she wouldn’t get in the car. She wouldn’t come with any of us. We didn’t have proper medication for her. From there, the doctors evaluated her and put her into a memory care unit in the hospital for cognitive evaluation. That’s when we got the diagnosis of Alzheimer’s.”
Following her stroke, Mary had bounced from one family member’s home to another between Florida, Las Vegas, and Chicago.
“No one understood what was happening, and that’s kind of the tale as old as time with this stuff, right? We’re trying to figure it out and make what’s best for her.”
Kris was 29, a bartender and photographer, living with two roommates. Kris’s sister had two kids. Her mother (Mary’s daughter and power of attorney) was dealing with her own health issues. What was best for Mary following her diagnosis was 24-hour care that the family couldn’t provide, so they moved her into a state-run care facility.
“It was a really low-grade facility. It had no funding. She didn’t have long-term care insurance. It was just where people go when no one else can care for them,” Kris recalls. “We were all just trying to figure it out the best way we could.”
“I would go every day before or after work to stay with Grams because I felt so bad. Seeing her in that situation was really uncomfortable for me because it seemed like she went in there knowing everybody and everything, and within a month’s time, she didn’t even know who she was. It was like she lost.”
Mary was labeled a “fall risk,” groggy and off-balance from the medication she took every three hours to calm her agitation.
“I didn’t understand because Grams is the most flexible, agile person I’ve ever met. We just thought that was what happens when you have dementia. You gotta take this medication to make you not angry or make you not do these things. But after about two and a half months, my grandma got so skinny. She was not eating. In my gut, I knew this was going downhill really fast.”
Just shy of her 30th birthday, Kris faced a life-altering decision: Leave her beloved Grams in the facility or give caregiving a shot of her own.
In March 2017, Mary moved into Kris’s Chicago apartment, and their journey navigating Alzheimer’s disease together began.
On accepting responsibility, growing into her identity as “caregiver,” and discovering her purpose
Initially, the thought of being her grandmother’s caregiver never crossed Kris’s mind. Ultimately, she found her purpose in it.
“I wasn’t stable in the way people view as ‘stable’ — I didn’t have my own house, and I wasn’t like a career path kind of person. I was like a bartender and a photographer. I was traveling whenever I wanted to. I got to live almost hour-by-hour, and life was great, you know?”
Kris remembers the first few weeks as fun, feeling like the good old days when her grandmother would visit on vacation. She recalls the shift in the family dynamic and the doubt and judgment she felt from them. They told Kris to treat Mary like a child, but she wanted to treat her like the grandmother she always knew. She focused more on the special bond they had always shared and less on the dementia.
“I just let her live her best life, and we were just kind of like roommates. I wasn’t like the caregiver yet … at least I didn’t know I was a caregiver,” she says of the early days.
“I didn’t know anything about dementia. And then she went missing for six hours after wandering off when I was in the shower. That was a wake-up call. It wasn’t playtime anymore. I knew I needed to get serious about what I was going to do to care for her.”
Kris immediately began educating herself. She went on YouTube and searched “How to help people with dementia,” which is how she discovered dementia care specialist and occupational therapist Teepa Snow.
“I just started watching all her YouTube videos and learning how to interact with people. I feel she saved me as a caregiver.”
She took things in stride as her life began to change. She paid a caregiver to stay with Mary while working as a portrait studio photographer from 10 a.m. to 2 p.m. She rushed home to spend the evening and bedtime with her grandma before heading off to bartend from 10 p.m. to 2 a.m. She installed cameras to monitor Mary while she worked her shift at the bar.
“I didn’t have an identity at that point because I literally was going from one job to another job to another job, sleeping, and doing it over again. There was no time for friendships. There was no time for self-identity. I was just grinding, hustling hard.”
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Three years into the balancing act of caregiving and working two other jobs, Kris was hitting burnout.
“I was fortunate to have a boss that was understanding and willing to work with me, who allowed me to monitor my grandma on my phone while at work … but I was fried, at my wit’s end. I was just trying to make money and survive bartending, but I [had] this responsibility at home that needed my attention.”
Kris says the pandemic finally forced her to slow down — it’s what “saved” her. She stepped away from her job and never looked back.
“Leaving the service industry, not returning to my bartending job, and just slowing down as a person helped me realize that I matter, too, and that I need an identity. I was just working, almost like a chameleon — I was this person at this job, this person at this job, then I went home and was a caregiver and Mary’s granddaughter. It’s like, when are you you?”
She sees this journey as what created her path and helped her discover her identity.
“I became sober being a caregiver, and that was a life changer for every aspect of my life. I don’t think that would’ve happened if I wasn’t caregiving because I wouldn’t have needed to be as present. It brought everything I needed in my life to attention.”
“I always feel like I’m a little bit different than a lot of caregivers because I never had a career path, I never had like this idea of where my life should be … so I feel like I’ve had a bit of an easier time in this role because I’ve accepted it so well, whereas I feel like a lot of people are pushing it away because it’s not what their life was supposed to be. But I didn’t know what my life was supposed to be. I was a free spirit. And so this kind of grounded me in a way that I probably needed.“
On sharing their journey and destigmatizing caregiving for all
In September 2017, Kris started chronicling her days with her grandma. What began as posts on her personal Instagram account evolved into an entire account dedicated to their journey as a grandmother-grandaughter duo navigating the world with Alzheimer’s.
“That’s around the time I found Teepa Snow, and I started identifying as a caregiver. I was just posting about what we were doing and what was happening, and people were reaching out to me like, ‘My loved one has dementia, and I totally feel what you’re going through!’”
“It really helped me hone in on what this experience was. It brought me to a purpose. I feel like I found my voice as a person and advocate for people with dementia, and it just kept growing.”
Today, the duo’s Instagram account, “LifewithGrams,” boasts more than 15.6K followers, while their TikTok account has a staggering half million followers. Their online presence has created opportunities for Kris to connect with the caregiving community further. She’s been featured on talk shows and began hosting Always on Call, a streaming video podcast series launched by Patients Rising, a national patient and caregiver resource and advocacy organization.
While she admits that she has “warped” her world around elder care, it has given her “pride, purpose, and fulfillment.”
“I find such joy in sharing and learning from others,” she says. “I’ve gotten into advocacy work that I never would have expected to dive into like. I love the politics of it all now and learning about the healthcare system and how it consistently fails us.”
Perhaps most importantly, interacting with the caregiving community has changed Kris’s perspective on dementia and caregiving, and she hopes her content does the same for others.
“I’ve learned that it’s a disease that this person has, but they’re still the person, and we need to honor that and show that, not hide them away and act like they’re less than because of it.”
She says seeing content from other caregivers like Alma Valencia has been an “eye-opening experience of what can happen in the world and happen to you.”
“Just because you’re not in it right now doesn’t mean that your future might not look like this. I think that a lot of people don’t realize that just because there’s no Alzheimer’s in your family doesn’t mean a loved one can’t develop it. Also, just in the ableist mindset, disabilities can happen. You can wake up one day and become disabled. It’s really about opening your eyes and world to the possibility of change.”
On advice for other young caregivers:
Seek resources and create your community: “These big social media presences are a great way to connect with others finding support groups. There are people like Teepa Snow and Dementia Care Blazers on Youtube, and Hilarity for Charity is an incredible organization.
“Aside from all of these things, not everyone is going to get a grant, not everyone is going to get respite, and not everyone is going to be able to receive that because there is a lot of need and not as much output. Caregivers think a certain way, and we care. That’s why we do what we do. But not everyone has the same mindset. So you need to find or create the resources you need.
“Find people who understand. Because, yes, it is isolating. You have to tell people what you need. You can’t expect people to know. Even if you feel alone and isolated, find those people. I’m very fortunate for my friends; I have trained them to be caregivers, and I now can trust them more so than others. I can call up my friend and say, ‘Hey, come, watch my grandma for a few hours.’ If my mom wasn’t going to show up or didn’t want to wipe my grandma’s butt, but I needed a break, I needed to find someone who was going to and willing to. Help them help you.”
Shift your perspective: “Find ways to make [caregiving] work for you. Go to therapy, talk about your resentments, but don’t let it consume your life. Because if every day you wake up going, ‘I don’t want to do this,’ then you’re not going to succeed. You’re not going to feel good as a person. Your loved one’s not going to succeed. And so, even if you didn’t ask for this, even if you didn’t want this, there are silver linings in life that I truly believe we have to find to move on to the next day. Life doesn’t always work out the way that we expect it to. Things can change every moment, so embrace it and stop fighting it because this is where we’re at. And if it truly doesn’t work for you, you have to find something to help you.”
Develop strong coping mechanisms: “It sounds silly, but remember to breathe and do it intentionally. I have a bad temper — it’s the New York Italian in me. But in those moments when I see red, I just close my eyes and take that breath because nothing in this world is that serious. Nothing lasts forever, and we have to learn to accept and move on. For me, it’s breathing and finding what I call ‘pockets of peace,’ which is just something in the day whether I can put on a song I really love, and it fills up my heart, or I can step outside in the sunshine for five minutes.”
Don’t lose yourself. “Try to maintain a sense of self. Make sure you continue doing that and don’t get so wrapped up in providing for others because you are still a piece that needs to be provided for. We think we need to be and do everything for our loved ones and be there, but you are still a person first.
“So take that 10 minutes. If your loved one’s taking a nap, forget the dishes, do them later. Read the book. Take time for yourself. I’m going to eat what I want to eat. I’m going to enjoy the things I enjoy. I’m going to wear what I want to wear. I put makeup on a lot of days to sit in the house, but it’s because when I catch my reflection, I go. ‘Oh, you can look good, girl!’ It’s just those little things that we may not think we have time for.”
Create a routine. “Set a routine and a schedule so you can make the time for yourself. So if my grandma wakes up at 9 a.m. every day, I’m waking up at 8 a.m. so I can have that time. Because if you’re waking up at the same time as your loved one, you have no time to gather yourself — you’re jumping right into the crazy day. So find ways to create the time for you, even if it’s just 10 minutes before they get up. You need to prioritize yourself.”