Caregiving for a mother with dementia brought healing : Shots
Photographer Lori Grinker’s relationship with her mom was strained for much of their lives. Lori recalls Audrey Grinker as a woman who had her kids very young and struggled to be a mother.
Their relationship had also been marked by loss; first her parents’ divorce when Lori was 16, then the death of her brother from AIDS in 1996.
In 2015, Audrey, who already suffered from Crohn’s disease, began to experience mysterious new health problems. She started mixing up her prescription medications, saying hurtful things to Lori, forgetting key details of their lives.
Lori didn’t understand what was going on but she began to document her mother’s life. It gradually became clear she was suffering from Alzheimer’s disease.
In March 2020, Lori traveled to Florida to help Audrey move into an assisted living facility, a plan that was immediately upended with the arrival of nationwide lockdowns. In the next three months, Lori lived with Audrey in her apartment, sleeping in the same bed with her by night and teaching college classes remotely by day.
Lori also became a caregiver for her mom, helping her as the Alzheimer’s progressed and she went through treatment for cancer.
While her mother’s health spiraled, Lori’s relationship with Audrey actually began to mend. Lori began photographing objects around the apartment and that brought back shared memories and triggered deep conversations. Thrown into a new intimacy by the pandemic and caregiving, she and her mom were able to “heal the rifts of a lifetime,” she says.
Eventually Lori went home to New York but she continued visiting and photographing her mom until Audrey passed away in March 2021 at age 85.
Lori’s project about this time, titled, “All the Little Things,” won the Bob and Diane Fund Grant in 2022, which supports visual stories focused on Alzheimer’s disease or dementia. Here, Lori reflects on the experience of making the photos and her changing relationship with Audrey.
This interview has been edited for length and clarity.
What was your relationship with your mom like before this project began?
My mother was 18 [when she got married], and she had my brother at 20 or 21 and me at 21 or 22. So she was just totally ill-prepared to be a mother. And she was also still kind of a kid herself and wanted to be taken care of. When my parents divorced when I was 16, it was really hard on her. And so it again became about taking care of her. It was hard for me and I resented it. I even went to a boarding school in junior high school because I didn’t really want to live with my mother when my parents split up.
[Then] she moved to Florida when I was 21 to be closer to her sister. We would go visit her and she would be out playing golf instead of picking us up at the airport. So that’s how my mom was. It was just all about her.
When my brother was sick [with AIDS], my mother and I switched off every few weeks taking care of him when he was really unable to take care of himself. But she was still very selfish, because everything was on her schedule. And then in 2000, I got cancer, non-Hodgkin’s lymphoma, which is the same thing my mother was diagnosed with in March of 2020. But when I was sick, she wanted to take care of me. So she had that [maternal] instinct.
And how did your relationship start to shift toward reconciliation?
In 2020, when she was going to move into assisted living, I was going to help her, but then COVID started so we couldn’t move in on the day we were supposed to. I had to stay there in her one-bedroom apartment and I actually slept in the bed next to her.
There was very little you could do because everything was on lockdown. And we would talk. And we just started getting through stuff. My mother and I were having fights and I started to understand that part of it was dementia and part of it was her stubborn personality, because she didn’t like change. But we started talking and I recorded everything.
And we said, I love you for the first time, and she thanked me for helping her, which was a huge thing for her to say thank you. So, you know, we really started to melt away all that stuff from so many years. And it was this kind of beautiful, magical, but very difficult time.
How did you get started taking these pictures of the things in her apartment and why?
We started talking about these objects and things that she had around her apartment and I wanted to photograph them. And I don’t know if it was just a response to the confusion and the grief – I guess making art is a natural process, when you’re dealing with something. I had this idea to make 20 pictures, and I ended up making over 100.
Her apartment was on the 27th floor, and was bright, but it wasn’t really bright enough to photograph inside. I would take the blank newsprint that I was using for [packing Audrey’s possessions] and take it outside and tape it down and photograph when the light was always changing throughout the day. It was really great to photograph them and then show them to her and talk about them and it brought back all these memories. And it really helped build our relationship back.
What are some ways that being your mom’s caregiver at the end of her life helped heal your relationship?
It was always difficult for her to eat because she was afraid she would have to go to the bathroom [during her chemo appointments]. And she had to eat to take the drugs. I would make these meals for her, just desperate to get her to eat. I photographed each thing, like her favorite type of muffin or her favorite type of ice cream pop. For dinners, I would order the foods she really liked, whether it was Chinese, or chicken wings, or I tried to make this spaghetti dish she used to make for my brother and I when we were kids. It was, again, a bonding thing, and trying to find commonalities.
I slept in the bed with her. Sometimes she would get really sick at night and she wouldn’t make it to the bathroom and I would have to clean the bed. She felt so bad, and we would talk about it. And we would lie there in bed and just talk, and talk about things that didn’t work in our relationship, and why she never said I love you. And just other things that were much smaller.
If she had just died and we didn’t go through this, I would still have all this anger – even though she really wasn’t equipped for motherhood and she wasn’t a very good mother, and she was a selfish person — I don’t have any of that anymore. And, you know, when I saw that pictures of her were going to be getting published, it’s hard. It makes me really sad. It makes me miss her. And I don’t think there’s any experience that’s much deeper than helping somebody go through the end of their life except for maybe helping them come into the world, which, you know, she didn’t do very well. So, in a way, we were lucky that we had that time.
Why hadn’t she said I love you?
I don’t know, she just wasn’t an expressive person. And, you know, I was a messed up teenager. Part of it was her fault, part of it is just my makeup I guess as a human being. Her father was a tyrant, and my grandmother was very, very quiet. So I think she wasn’t given a lot of love. She was afraid and very insecure.
Would you say that by the time she passed, you two were on a good page together and, there’s nothing else maybe you wanted to say or to reconcile?.
There wasn’t anything else I wanted to say. And some of the stuff that, again, was so hurtful during this period, I realized, was dementia related. Just things she didn’t remember or the way she reacted to things. When I was young and I had a diary I would write that I didn’t love my mother. And I think that’s kind of a horrible thing to have to admit. And we did find some love for each other during this period. And there is a part of my heart that misses her.
So I’d say that we really healed a lot, and we had some laughs there, and we certainly had some tears, and we certainly did have some huge fights during this period. I don’t have any anger anymore. I don’t really forgive her for some of the things, but I understand it much better.
Your mom, was she perfectly fine with the camera? Did she ever object to it?
It was interesting how patient she was with that. And, I think she liked the attention. I think, again, that also brought us closer. I think she liked that, after all these decades of me going around the world doing stories about people, I was doing a story on her.
A common question with this sort of documentation of a loved one who is ill is whether showing them in their weak moments could be exploitative. How do you feel about that?
I did it with her permission, and she was aware of what I was doing, even with her dementia. … I think a few photographs are difficult to look at for sure. Others are sad, but some are funny and some show human resilience.
When my brother was diagnosed with AIDS, I read and watched and searched for everything that would help me prepare for what was ahead. I needed to know more. Looking at photographs, reading people’s personal stories, and viewing some narrative films helped me in so many ways. When I was diagnosed with cancer, I did the same.
I hope this work will help others prepare for some of the unknowns. From the comments received, I know it has helped some people with their situations. I think projects like this help others know they are not alone. They can help us recognize things we can’t quite pinpoint, even place our grief, and in some cases help us find some closure.
A native New Yorker, Lori Grinker is an award-winning photographer, artist, educator and filmmaker. She teaches at The New School University and at New York University’s Arthur L Carter Journalism Institute.
This story was edited by Carmel Wroth. Visual editing and production by Max Posner.