Kris and her Grams are soulmates. They’ve been living together since March 6, 2017, but they’ve been deeply connected throughout Kris’ life.

Kris’ Grams, Mary, was raised in Ozone Park, Queens. She was the oldest of five. She worked different jobs, but was primarily a waitress. She married and divorced very young. Grams had one daughter, Kris’ mom, and a son who was stillborn. 

Kris shares, “She raised my mom and was the hustling, hard working, independent single woman. Unfortunately, she did have continuous loss in her life. She was the person who found one of her brothers when he died. Then a few years later, her other brother died. All that loss in her life. Then after her two brothers died, her dad died. Her mom got diagnosed with Alzheimer’s. You know, life always has those struggles, but she was always like, ‘I can handle it. I can conquer anything.’” 

“I think, in her teen years and early twenties, she dealt with a lot of BS from men. I think she just had that power instilled in her young after she dealt with so much BS that she said, ‘This is who I am and I’m never gonna let it go.’ And she just fought hard to maintain that. She never got remarried. My whole childhood, I never saw her with a significant other or anything like that.”

Kris, a portrait photographer and now caregiver, began her childhood in New York, went to high school and college in Las Vegas, moved back to New York, then headed to Nashville before ultimately settling in Chicago. She grew up with her mom, her two sisters, and her Grams. “We had each other’s backs and we were all there for one another. That’s just kind of the mentality that my grandma raised us with was to always be there for each other.” 

“Me and my Grams, our bond is just love and care. We were always laughing. I mean, I have pictures of us from when I was seven years old and we’re both in hysterics. We just kind of vibe with each other. There was always this kind of connection between my grandma and I that– everyone knew it. Everyone always said, ‘You’re her girl.’ I’ve always just had that. Growing up, she was my best friend. We did everything. We cooked together, we did hair together, she took me shopping.”

“My grandma was always just the life of the party. She would pick me and my girlfriends up from the mall or the movie theater growing up. She would blast HOT 97, the hip hop and R&B station. My grandma was always so wacky and crazy, like she wanted to be one of the girls, you know? And she used to take us to Friendly’s all of the time. One time, the waitress was coming with a side of ranch or something, but my grandma’s always talking with her hands, and she knocked the ranch out of the waitress’ hands and then she tried to clean it up for the waitress. Those moments—there are so many of them from my childhood.”

“Once, we were on the highway, and my grandma went to help someone with their tire. Like she was fifty-something years old and she was like, ‘Oh this person looks like they need help.’ She was right there like, ‘I got a jack in my trunk.’ That’s kinda who she is.”

In 2007, Grams had a stroke, resulting in difficulty communicating and difficulty moving one side of her body. Kris recalls that a doctor mentioned possible signs of dementia after the stroke, but following a month of rehab, “It was like a miracle. She was totally fine again.” It seemed like Grams was back to normal. “And for a few years, it was like that.” 

Even so, following the stroke, Kris and her family didn’t want Grams to live completely on her own, so she moved into Kris’ sister’s in-law suite. “But she was still independent, so she had her own entrance and was still driving her car and things like that.”

“It wasn’t until seven years after the stroke that the behaviors were really starting to be concerning. My sister had a brand new baby and my grandma tried to feed them crackers and soda. The baby was not even six months old yet. And my sister noticed her leaving the baby on the couch and walking away. My sister was like, ‘I can’t do this, I’m a first time mom.’ So then my sister started locking the door so my grandma couldn’t come up the stairs. I think that’s when my grandma really started to, I hate to say it, but lose it. She was getting angry and we didn’t know how to handle it. My mom took over and moved my grandma in with her in Las Vegas for a few years.” 

“We could handle it, handle it, handle it, until the moment we couldn’t handle it anymore.” Suddenly, Grams, historically an amazing cook, was burning all her food. Her pasta sauce turned into water. One day, while visiting her grandchildren in Chicago, she walked out into a snowstorm with no coat or shoes. 

“I tried [to encourage Grams to come inside]. She was like, ‘I’m not going with you, I’m not going with any of you.’ This was the first time I was like, ‘What the hell?’ She was already doing things like calling me seventy-two times over the weekend, but it was the first time I was like, Who is this? Like you’re not gonna come into the house with me?’ So we called 911.”

Grams was placed in a memory care unit for evaluation. “It sucked because it was right around the holidays and we were only allowed to visit her for an hour. We weren’t allowed to take her out because she was still being looked at.”

“It’s crazy because literally two months before this, she was driving her own car, going to Dollar Tree by herself … That’s kind of how it all happened for us, just kind of so fast like that we were thrown into it.”

The doctors informed the family that they believed it would be best for Grams to go to a care facility. “And so my mom was like, ‘Well, if she’s gonna walk out in the snow with no shoes and no jacket on, like if this is the new normal, she’s not moving back in with me.’ And so Grams was placed in a nursing facility. 

“My grandma had been tossed around three different times in one year. A mixture of us not being educated and life happening. She moved from New York to Las Vegas. She’d never left New York her whole life and then at 78, she was living in Las Vegas … and then Chicago.”

“So now my grandma’s in some nursing home in downtown Chicago … I used to go every day before or after work to check on her, and it just was the most heartbreaking.”

Kris couldn’t believe what was happening. Just a year before, she and her Grams had taken a road trip from Florida to Las Vegas. “We stayed in New Orleans, Austin, Phoenix… We stayed in like four or five different cities on the way to Vegas and everything just felt so normal. So it just seemed like how with one diagnosis does she go from living a life to now not having a life?”

“Only recently did I remember that the doctor said she [might be demonstrating signs of] dementia after her stroke. I was going through old videos and during that roadtrip with my grandma, I have a video of me and her talking [in Phoenix] … My grandma kept saying, ‘Oh, I’ve been here before. I used to live here,’” but she had never been there before. 

“And it’s just so weird to me because I didn’t even remember that [until finding the video recently]. And it was just so odd to find that. She really had signs of dementia. I just was like, ‘How did I not remember that?’ So looking back, in retrospect, I wish I would have been as knowledgeable as I am now, but you don’t know until you get there. She probably needed more assistance a lot sooner.”

But now, Grams was at the facility where she was getting assistance, and something just didn’t feel right to Kris. 

On Grams’ birthday, Kris went to the facility to take her out for a day of fun. “And they were like, ‘Well, you can’t. She needs to take her medication. You’re gonna mess up everything.’ I was like, ‘It’s her freakin’ birthday. We’re taking her to Outback Steakhouse. We’ll bring her home when we bring her home. Don’t tell me I can not take my own loved one out of the place she lives because that’s all this is to me is the place she lives. And so then I took her out for the whole day and then when I brought her back, the administrative director sat me down and talked to me and basically treated me like a child, saying, ‘You really can’t be doing this, you’re making it worse for her, she’s not gonna get well-adjusted.’”

“She had lost like thirty pounds, she had stopped really exuding the energy of my grandma. She was very lethargic. She was sort of giving up.”

For Kris, the turning point happened on the day of the Super Bowl in 2017. Kris was spending time with her Grams in her room, watching the game on television. “Grams’ roommate was sitting in her own feces, and I had told the aide when I had first gotten there.” Halftime came and went, but no one showed up to assist Grams’ roommate. 

“I just remember thinking, ‘This is how [Grams] is gonna die.’ I don’t like to talk about things like that because now, I’m knowledgeable. But in my situation, that was how it was.”

“I get a lot of backlash for talking about nursing homes, but I speak from my experience because this was literally what it was like for my grandma. They’re wandering because they’re bored. No one is interacting with them. They’re sitting looking out a window while they’re wafting in disgusting aromas.”

Kris went home that day with a question on her mind. “Would it be crazy,” she asked a friend, “if my grandma moves in with me?” At the time, Kris had been looking for a new roommate anyway due to the fact that her previous roommate had just moved back home to provide care for his mother. 

“I was talking about how miserably sad I was going to visit my grandma. I was just crying to my friend like, ‘It’s so terrible, it’s so terrible.’ I was like, ‘What if Grams took [the empty] room?’ She was like, ‘I’ve been wanting to tell you to have your grandma move in for the longest time, but I didn’t know how to approach it. But you love your grandma.’”

So Kris spoke with her sister. “If I do this,” she told her, “I need support, like we have to do this together. I want to make sure you’re on board and you’ll support me in this decision.” 

“At this time, I lived in downtown Chicago and my sister lived in the suburbs, so she was like, ‘I’ll do what I can, but please keep in mind that I have kids and I live in the suburbs.’ But all I needed was her saying, ‘I’ll be there for you.’ So then I talked to my mom, and my mom was like, ‘If you think that you can do it, do whatever you want.’ So I was like, ‘Okay, let’s do it.’” 

So once again, Kris had to sit down with the administrative director of the facility. “This is one of the most intimidating things that I don’t really talk about on my journey. I had to sit at a boardroom table with doctors … Six other people and me and my grandma. And they’re going over all this stuff, like her medication needs and what she’s diagnosed with. And they basically asked, ‘Are you sure that this is gonna be best for you?’ They were treating me like a child. And I’ll never forget this, but when I signed the paperwork to finalize it, the man was like, ‘Good luck, I’m sure we’ll see you in a few months.’ And I thought to myself, ‘No effing way you will ever see me again.’”

So Kris and her Grams became roommates. “The first week was the best. I called off work that week and we went to the zoo, we were settling in, we went to Kohl’s, we bought her a new bedspread. She was the happiest I had seen her in months. She was like, ‘This was all I ever wanted.’ It was so perfect.”

But one night, a week or so after Grams moved in, around 2:00 in the morning, there was a fire in the apartment. “My neighbor was grilling and was drunk and set not only their apartment on fire, but the two next to it … And so we’ve got the fire department knocking down our door telling us to get out of there. My grandma is like, ‘I’ve gotta get all my stuff,’ and I was like, ‘We gotta go, we gotta go, girl!’ And so we sat on the curb of my street for about four and a half hours watching my building burn. I didn’t grab my keys. I didn’t grab anything.” 

Most of Kris and Grams’ belongings were lost: destroyed by the fire or by water damage, or stolen from the empty apartment in the days that followed. Among items that were saved were Kris’ baby photos, which her mom had placed in a plastic container that the fire never reached. It got wet, but the photos were protected. 

Kris contacted her sister, and she and her Grams landed in her sister’s basement for the next few months.

Eventually, they were able to move out. “We found an apartment above a hair salon two minutes from my sister’s house. We moved there and we stayed for three years. That was the best. My sister was so happy because she didn’t have to drive into the city anymore. We created this care community. She would check on Grams, I would pick up the kids. We would have dinner at her house one day, dinner at my house one day. And it just felt like what my grandma always wanted for us; that family unit. It felt like we were building it and maintaining it and it was really really great until the pandemic happened … Since then, my family has taken a step back. I struggled at first. I’m just starting to get to where I need to be.”

“I felt like I was drowning because I didn’t have that family support anymore, and I didn’t know how to get it … Now, I’m building my own community of people I trust, which I wish I would have done sooner. I wish I would have been more trusting with others … I know also relying on my family a lot did put this kind of pressure between us too because it was almost like, ‘Well, if you’re gonna say no, then who else do I have?’ But still, when my sister would watch Grams while I did [work], I would be as quick as possible because I just felt bad knowing that my sister never gets a break either. She’s a mom and a school teacher. I do give my sister a lot of credit because she does work so hard and even when she was working so hard, she would tell me, ‘Don’t feel bad.’ I felt bad. She was not making me feel bad. I just felt bad because I just know how much she gives.”

Kris has built and continues to build a community of people online and in person who care deeply for her and her Grams. She posts regularly on social media to show others what life is like for the duo. She supports other caregivers, raises awareness, and vulnerably shares pieces of the life she and Grams have built together. 

“Grams is my soulmate. She is my best friend. We have this everlasting bond. I truly feel like it’s only grown with her dementia … People are like, ‘Oh, they’re a shell of who they used to be,’ [but] that’s because they’re being treated like a shell of who they used to be. Because you’re treating them so condescendingly. That’s what I really try to show people … I really try to focus on who my grandma was and where she is now. I wish I had more videos of her in the nursing home so that people could see it wasn’t the disease. It’s not the disease that did that; it was the lack of what was needed for her. And as soon as she moved in with me, we were able to nurture who she is … I wish more people understood that.”

“I just wish that people knew … that there is still an opportunity to grow your relationship [after a diagnosis of Alzheimer’s Disease]. I think I’m very lucky too because my brain never worked the way most people’s do, you know? So I feel like that has actually helped me kind of live in this world with her and just kind of focus on, ‘What is here? What is the moment we can share right now?’”

“My grandma really is the reason why I love life. I look at life through her eyes. When I was depressed and sad when I was living with her as a teenager, she was like, ‘But aren’t you excited for what could come?’ She would always lead with gratitude, like ‘I woke up today and the sun is shining, so that’s the reason we’re happy today: the sun is here!’ I feel like now, in this role, I’ve really been able to kind of hone in on that … I really try to focus on what we can build in this moment. Okay, we can laugh together, we can soak up the sun.” 

“I think some of my favorite moments with my grandma are the ones where we are not communicating with words. The love that you can share. You have to sometimes sift through it and kind of figure it out, but you can still get to that place.”

“She still has moments of anger, aggression, frustration. I think a lot of people don’t realize that. I do like one wrong move and she’s gonna be like, ‘Aaah!,’ but instead of going, ‘Why’d you yell at me? Why’d you do that? Why’d you take that?’ I just let it roll and move on to the next thing or just completely change the topic. My grandma’s bad moods last less than a minute because I don’t pay attention to them.”

When a difficult moment hits, Kris resets, maybe makes a silly face, distracts, and moves on. Kris has become the person for her Grams that her Grams was for her as a child. “If I was ever sad growing up, my grandma would come in and do a funny dance. She was always just trying to bring out the love, the joy, and the positivity in others, so it’s been really nice to kind of give that back to her.” 

“It’s a progressive disease and I’m still learning as I go. I don’t know it all. I can just share my experience … I just wish people were more understanding of the fact that we’re all just humans; we’re just figuring it out as we go. And just give a little grace to people.”

Kris recommends that caregivers and, in fact, people in general try to stay focused on what matters: “Love. Focus on love.”