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We're Mothers. We're Daughters. We're Taking Care of Everyone and We're Exhausted

Five women get real about the daily struggles of family caregiving.

Who Cares for the Caregiver?

When you’re surrounded by people who need your help—young kids, aging parents, spouses, bosses, coworkers—you’d think that loneliness would be the least of your problems. But the Family Caregiving Alliance reports that as many as 70 percent of family caregivers experience significant depression. Many factors—including social isolation, the lack of time or energy to participate in once pleasurable activities, the guilt associated with taking time for yourself when so many others need you, and challenges juggling careers and relationships—contribute to the stress and loneliness that come with caregiving.

To break down that sense of isolation, five northern New Jersey women got together for some real talk about what it’s like to take care of everyone.

Cathy Patullo | Photo credit: Jackie Molloy/The Well

CATHY PATULLO, a married production manager for a book publisher

She’s caring for: A 9-year-old daughter with special needs, an 85-year-old mother and a 92-year-old mother-in-law.

What it’s like: My husband and I both commute to New York City each day for our jobs. And our daughter has multiple appointments each week with specialists, as well as her regular kid doctor’s appointments, so I have to find time for all of those. My mother-in-law still lives in her own home, and my husband and his four siblings take turns caring for her. So every Saturday he’s with his mother, which means I’m responsible for everything else in our lives.

What stresses her out most: The constant anxiety about getting that phone call saying my mom fell down or had a stroke or something horrible. It keeps me up at night. The thought is always there.

Where she finds relief: Going to the gym. It's the only time no one's talking to me.

What scares her: My mother still lives alone in Rye, about an hour away from us. The other day, she ripped the phone and cable cords out of the wall. Again. She’s done it before and I call and get no answer, so I worry. She probably has myriad health issues but we don’t know what they are, because she won’t go to the doctor. In my 45 years, she’s never been to the doctor, ever, except when she was pregnant with us. Her kitchen is a fire hazard—you can’t tell if her stove is on. It was fine when she was cognitively OK, but now she’s ripping things out of the wall.

Martha Bonta | Photo credit: Jackie Molloy/The Well

MARTHA BONTA, a married music executive

She’s caring for: A 12-year-old son, an 8-year-old daughter, and until recently, her elderly parents who lived five hours away in upstate New York. After her mother died, she and her sisters moved their father to a nursing home. He died shortly after.

What it’s like: There was a six month waiting list for the nursing home we wanted. So my father had to live alone for that time. We hired a woman to come in and look after him during the week, and my sisters and I took turns on the weekends. We got a second car, and I’d leave both kids with my husband and spend weekends up there. Finally we moved my dad into the nursing home, and I went up as often as I could.

He did OK there for a while, but then he had a couple of little strokes. They moved him to the skilled nursing part of the home and he just declined from there. Last summer he started refusing his medication. The next week, he was in the hospital with pneumonia and a week later he was gone.

What stresses her out most: Not being able to do enough for anybody. Not for my sister, who was coordinating my dad's care after mom died. Not for my husband, who was left holding the bag on the weekends I helped care for my dad. Not for my kids, who were 5 and 2 at the time and didn't understand why Mommy kept disappearing. 

Where she finds relief: I try to remind myself that I’m only one person and I can only do so much. What’s been a big help is that we were lucky enough to be able to afford a cleaning lady, which relieved me of having to handle some household chores. So on the weekends that I was actually around, I could just enjoy being with my husband and the kids.

What makes her sad: We never in a million years expected my mom to go first. She went into the hospital with fever and a staph infection, and then I got the call in the middle of the night that she’d had a stroke. She never regained consciousness and she had a living will, so we had to respect it, which is a horrible and sad thing to have to do, but we did it. There we were, sitting by my mother’s hospital bed, worrying about what we were going to do with our dad. It was really difficult to actually mourn her, because our lives had changed so suddenly and we had to deal with the logistics surrounding my dad’s care.  When my dad died, my kids were older and there wasn't anyone else's care suddenly hanging in the balance, so it was a lot easier to mourn him.  I actually feel guilty that I wasn't able to accord the same respect to my mom, who deserved to be mourned just as much as my dad did.

Nichola Cox | Photo credit: Jackie Molloy/The Well

NICHOLA COX, a single business consultant

She’s caring for: A 101-year-old grandmother and a 7-year-old grand-niece, who both live around the corner with Nichola’s mother, as well as an elderly aunt in Florida.

What it’s like: My grandmother and my mom live together and I’m right around the corner. My grandma had pneumonia last year and it took a toll on her body. She’s now getting more forgetful. We try to keep her active—we take her on vacations and just keep her engaged. When my niece had her daughter at a very young age, we wanted to make sure the child had a stable home life while attending school, so she stays with my mom during the week. She’s 7 now, and adds a lively dynamic to the house since both she and my grandmother are opinionated, feisty people who think they’re more independent than they actually are.

I help with the pickups and the drop-offs. I’ll be in the middle of a conference call and realize that I have to go pick up my niece, or need to check on my grandmother. And then I’m also responsible for my grand-aunt in Florida, who’s in her 90s and still living on her own. I had to step in when I realized that bills weren’t being paid and things were falling through the cracks. Recently I had to stay down there for three weeks until I could find a live-in who could care for her.

What stresses her out most: Juggling so many things! If I had to pick one, it would probably be helping to care for my grandmother. Watching her cognitive decline carries its own level of stress and sadness. I find myself trying to force back the memories and avoid thinking about it.  

Where she finds relief: Prayer and having a spiritual life definitely helps. Changing up the routine and taking everyone on a stay-cation also helps. Spending a night in a hotel here and there forces us to slow down a little and relax for a day or so.

What she regrets: A few years ago several relatives and friends passed in a short period of time. After my grandmother (my father’s mother) passed, I had to take a leave from work to help my mom and grandmother through their grief. I’ve had to make career decisions based on needing to be closer to home and not traveling as much. My job asked me to go to Brazil for six months. I couldn’t do that. It’s probably impeded me, but helping my family is my priority.

Raquel Wall, seen from behind, discusses her caregiving challenges. | Photo credit: Jackie Molloy/The Well

RAQUEL WALL, a married retail executive

She’s caring for: Raquel’s mother recently passed away after a more than 10-year battle with Alzheimer’s disease. She and her husband have a 12-year-old daughter and a 9-year-old son.

What it’s like:  My mom was still living on her own until we moved here from Brooklyn when I was pregnant with my daughter. It was my husband’s idea for my mother to come live with us. We had a new house, a new baby, we had my mom and we managed as best we could. We put my mother in a senior day care center for a while, so the bus would come and get her every morning. We had babies at day care and my mother at senior care. We finally had to make the decision to do assisted living. The first one wasn’t bad, it just was really expensive. So we left there and went to another place. And that place was bad. One day we went and my mother had these marks on her chest and nobody could tell me what they were or how she got them. So we had to get her out of there. We moved her to a third assisted living and that’s where she lived until near the end of her life.

What stresses her out most: Never being able to find time for myself. That’s the hardest part. I had to do things at work, take care of the kids, figure out when I was going to visit my mother, squeeze in time with my husband, and maybe actually talk to a friend. I didn’t realize how much weight I was carrying until after my mom passed. And the whole time trying to look like I wasn’t struggling and everything was OK. All of that was just a lot.

Where she finds relief: When I was dealing with the stress of watching my mother fade away, I found relief when my husband would tell me to stay home and relax—that he and the kids would go visit my mom. Sometimes he would insist. So I would literally veg out in front of the TV and binge watch my shows. I would not have to think about my own reality for a few hours. It may seem like a silly thing, but it would be just what I needed to recharge. Other times I would find myself crying through some heavy “why me” moments. But that was a release, too, and it helped.

What she regrets: My mom was diagnosed with Alzheimer’s at 64—the same year she retired from work. She finally had time for herself, and she was robbed of any pleasure in that area.  When my daughter was born, she knew that this baby was somehow connected to her, but she wasn’t able to be a grandmother. And she didn’t understand at all when my son was born—she was pretty far gone by then. The kids were robbed of knowing her, and she never really knew them. They had “grandma who talks”—my husband’s mom—and “grandma who doesn’t talk.” That’s all they knew, because she was sick their whole lives.

Ann Gallagher | Photo credit: Jackie Molloy/The Well

ANN GALLAGHER, a married graphic designer

She’s caring for: A 9-year-old son, a 6-year-old daughter, and an 85-year-old disabled mother who recently moved from assisted living to a nearby nursing home.

What it’s like: My mother is paralyzed on her left side and has been since I was born. She had a brain aneurysm. My father was her primary caregiver. He had diabetes, and he wasn’t managing it so eventually it all unraveled and he passed out behind the wheel while he was driving. Everyone was OK, but we had to move them to a continuing care facility here. This was around the same time we found out that our son, who we adopted from Korea, had a biological sister and we were in the process of adopting her. So I was moving my parents back down here, arranging for their house to be emptied out, and going through the adoption process at the same time. I ended up having to leave the job I’d had for 12 years to manage everything, and I’ve only just now been able to get back to work. This one is a much more flexible job and I’m able to take time off if the kids are sick or my mother needs me, but I’ve definitely taken a hit financially.  

What stresses her out most: Every time I leave my mom in the nursing home, I have this sinking feeling. But she’s paralyzed, she’s incontinent. I know I can’t take care of her on my own in the way she needs, but it’s horrible and I hate it. And I can't do enough for her because I'm juggling two young children, my job, my marriage, and occasionally my own needs. I feel like I can't see her enough or call her enough because of all the other commitments in my life.

Where she finds relief: I finally made a decision to start taking care of myself. After our daughter came home, I moved my parents into assisted living and my father died. It was then that I gave up the gym and eating healthy. I just ate the scraps that the kids didn't finish and stopped focusing on taking care of myself in general. After starting my new job, I've been able to get out at lunch every day and go to the gym. It's made a huge difference in my overall happiness.

What she regrets: My marriage—our relationship—was kind of put on hold for a long time because something had to be. We finally just picked it up again last year! But still, I totally feel stuck between the needs of my family and the needs of my mother. Stuck, stuck, stuck. And I can’t help wondering, if I hadn’t taken those four years off to take care of my parents and small children, where would I be in my career? I wanted to do it, of course.  This is life. We make these decisions. I tried to have no regrets when I think about the decisions I’ve made and how I’ve handled important things. But of course, you still do have regrets. 

Next Steps and Useful Resources

Published March 20th, 2018

Who Cares for the Caregiver?