When responding to caregiving’s varied and layered needs, achieving equilibrium means more than standing upright
Fact checked by Shannon Sparks
For caregivers, finding balance is about navigating social connection, emotional support, and physical functionality — all through the upheaval of disease or dying. For this issue, we invited three writers to explore how balance impacts caregiving, from various perspectives and stages of the process.
Mental and Emotional
When Tigist Taylor isn’t working as a therapist, the Rogers Park resident is balancing her mental and emotional health with caring for her 82-year-old mother and two adolescent children. Her spouse helps care for their kids as well, but Taylor is an only child and her mom’s only caregiver.
“She calls me almost daily to discuss her health concerns and her latest doctor’s visit. When I am able, I accompany her on her doctor visits and take notes,” Taylor says. “Additionally, I have been gently encouraging her to move to a building with greater accessibility.”
Caregivers who find themselves caring for aging parents while raising or helping their own children face many challenges, says Nancy Heap, a licensed clinical social worker. Their complex emotions include exhaustion and feeling not-good-enough. They also often have financial constraints and lack of personal time. “Yet, my clients who are in this sandwich generation would not give up the care given to parents or their children, even with the difficulties. They find tremendous meaning in this care. They just need some balance,” Heap says.
Taylor’s mom struggles with mobility due to fibromyalgia and other aging issues. And it has been challenging to find affordable senior housing for her near her Hyde Park residence. “As a single mom on a social worker salary, [her] finances have always been very tight and became more limited once she retired,” Taylor says.
The hardest part of balancing it all for Taylor is that she can’t. “This means some things will need to be sacrificed or not be up to par,” she says. “It is easy to feel guilty at times when I prioritize myself because I ‘should’ be engaging more with my mom or kids.”
According to the 2023 AARP survey “A Look at U.S. Caregivers’ Mental Health,” about 40% of caregivers reported they rarely or never feel relaxed.
“When we’re irritable and stressed, we don’t have the resources to listen patiently to our child who needs something from us because we’re too busy thinking about how we have to get to mom by 5:00,” Heap says. “All of these competing priorities [make] us hard on ourselves. We blame ourselves for not meeting the moment in the way we want to.”
Taylor prioritizes her mental health through exercising, eating healthy, and engaging in meaningful activities with her family. She also tries to accept that caring for her mom does not always look how she wants. “My mom often does not listen to my advice. I believe giving up independence is really difficult for [her]. But it can be really frustrating,” she says. “However, I have to remind myself to regulate my own emotions and limit the time spent worrying.”
She leans on her spouse and friends for support. And she says she hopes other caregivers are able to find those moments that bring balance, too. “Maybe it’s to listen to your rant for a bit, take your kids for a couple hours so you can get time to yourself, or give you a much-needed night out with friends,” Taylor says.
Taylor tries to give herself grace, too. Witnessing parents aging is not easy, she reminds herself.
Meredith Schroeder, licensed clinical professional counselor and board certified art therapist at the Chicago Institute for Change, says caregivers are often so focused on others’ needs that they may forget about themselves. “One can start thinking about how they feel throughout the day, checking in with oneself. Notice what emotions you are feeling or trying not to feel,” she says.
Listening to music can help shift moods, Heap says. “Caregivers often only have moments to reset themselves. It might be in the car driving somewhere, so turn on some music.”
Mental clarity helps in aspects such as problem solving, improved patience, and empathy, and it helps a person build resilience, Schroeder says. “Being emotionally centered can help one be more aware of how they feel, which can help to prevent bottled-up emotions that can lead to resentment and care-partner burnout,” Schroeder says.
Heap also recommends unstructured time that lets the brain rest and frees you from focusing on your to-do list. “Wander,” she says. “Unstructured time is a luxury that not many caregivers have, but a walk around the block — with or without your parent or child — can help to reset mood and give your busy brain a pause.”
As you’re walking, Heap adds, “Bring your awareness to the right now, and consciously turn off all the should-dos. Just be in the moment, noticing things like the leaves turning a different color.”
And don’t discount therapy or a local support group. “No one can do the job of caregiving alone, so finding a caregiver support group may help,” Schroeder says. “It’s essential to recognize the signs of burnout and seek support before [reaching] a breaking point.”
—Cathy Cassata
Physical
Caregiving can often be extremely physical, whether that involves lifting the person into and out of places such as cars, chairs, and bed, or tasks such as doing laundry, cleaning, or moving equipment. This makes staying in good physical shape vital. It helps with strength, mobility, and yes, balance.
So much of a person’s physical balance comes from their interpretation of the physical world. The senses feed the nervous system the information that then goes to the brain, which controls coordination and balance. The sensory system includes:
- Sight
- Sound
- Touch
- Taste
- Smell
- Proprioception (the perception of location and movement of body parts)
- Vestibular (the sense of movement, action, and location)
The brain organizes and interprets all this input in a process known as perception. Breath, voice, thought, movement, and imagination find their inspiration in the sensory field.
When the sensory field constricts, life can feel out of balance. Chicagoan Rebecca Schewe experienced this lack of balance during a period of intense caregiving. Schewe was in her late 60s when she cared for her 40-year-old daughter, Erica, who had an inoperable brain tumor.
When first diagnosed, Schewe’s and her daughter’s motivation was high. Schewe was eating and sleeping well, practicing physical therapy with Erica, and feeling energetic.
Then Erica’s treatments stopped working. Erica needed more physical help, such as navigating stairs, going to the bathroom, and showering. Schewe contorted and stressed her body to help. She slept less, her thinking blurred, and her behavior grew clumsier, she says. When not with Erica, Schewe dragged herself around, but she perked up whenever she needed to help her daughter.
Schewe’s field of attention included only Erica. If they were in separate rooms, Schewe heard nothing in the room she inhabited. Her listening was tuned to Erica. “I would listen all through the night in case she was trying to get up to go to the bathroom or calling out in the smallest voice, ‘Mom.’ I had to be ready to hear her,” Schewe says.
She remembers breathing very shallowly, high up in her chest, often holding her breath entirely. When Schewe would go outside for a break, she would take huge gulps of air.
“Everything closes in,” Schewe says.
“Your physicality, your eyes, your ears.” She remembers how instead of seeing beauty and spaciousness, she focused on possible pitfalls and dangers for Erica. When not on high alert externally, Schewe turned her field of vision inward.
Between lack of sleep, her laser focus, and pulling inward, she found that although she could think well to find solutions for Erica, she could not concentrate on anything else.
“I was scattered. I couldn’t concentrate or comprehend,” she says.
When our central attention “is shifted to a narrow space, often peripheral awareness [including the senses] constricts also,” says Deborah Zelinsky, OD, optometrist and founder of The Mind-Eye Institute in Northbrook. “Stress triggers survival mode, which means that all you care about externally are the basics for safety. You do not scan for fun and enjoyment. Your brain is so stressed internally that it is on a need-to-know-only basis regarding external information,” Zelinsky says.
Stress may feel mental, but in high levels it contributes to physical imbalance. Tuning into sensory perceptions and breath can help. Caregivers can note the sights, sounds, textures, tastes, and smells around them, in order to return to the potency of the present.
Suzi Marks is a movement educator and owner of Mindful Movement in Highland Park. She suggests that people experiencing these challenges look for the empty spaces and silences between sounds. “Find a place to listen to different sounds, then search for the quiet,” she says.
To help with higher cognitive functions such as attention, planning, problem-solving, reasoning, and decision-making: breathe. Breath nourishesthe brain’s frontal cortex, where higher cognitive functioning is stimulated.
Marks advises her client to try breathing through the nose. Then, ask themselves questions about their breath to bring focus: What happens to each nostril as air enters and exits — does it widen? Does the temperature of air entering and exiting the nostrils change? Does the breath slide down or bounce off the back of the throat?
“Rest your finger pads on your cheekbones,” Marks says. “Continue to breathe. Can you feel the expansion of your cheekbones?”
Wishing to truly exhale, Schewe finally called in outside help for Erica. She realized that she needed sleep, and Erica needed 24-hour care. Erica lived only three weeks more.
Now, a year and half later, Schewe works with a personal trainer and says she feels stronger and more embodied. She has found connection by touching and being touched by nature, and by reconnecting with the beauty and spaciousness of her surroundings, as well as with friends.
“I have to really concentrate on what opens that part of me,” she says. “It doesn’t seem natural anymore, which is funny, because it is natural.” —Kathleen Aharoni
Social
Vanessa Walilko’s long-term boyfriend, Ed, passed away in 2017 from pancreatic cancer. Prior to his death, Walilko, of Chicago, was Ed’s full-time caregiver. She managed his medications, drug side effects, and appointments with the medical staff and hospice doctor. She prepared meals, which involved responding to his changing food tolerances and finding calorie-dense foods.
“It was seven years ago, and this is the first time I’ve gone through what my day looked like,” Walilko says. “How did I survive that? It was so much to manage.”
Understandably, it was difficult for Walilko to keep up with her social life while taking care of Ed every day. But, experts agree, it’s important to maintain those social bonds, even when it seems difficult.
“Not maintaining a social life or social bonds can lead to isolation, and sadness, [as well as] resentment towards the person we are caring for. This resentment could then turn into anger, frustration, and maybe not noticing things about the person we’re caring for that need attention,” says Anya Drew, a psychotherapist at LifePath Therapy Associates in Chicago.
Caregivers may push social interaction to the side, however, because the person they’re caring for becomes the top priority in their lives. There’s an element of guilt, as well, where the caregiver doesn’t want to allow themselves the pleasures of going out or being social, either because they can’t leave the person alone, or because the caregiver doesn’t want the care recipient to feel like they’re missing out.
Plus, it’s not always easy to talk with friends about being a caregiver. They may not understand, or it might stir up trauma for them. Hosting guests can be difficult, too, because caregivers often want to keep the person they’re caring for safe from exposure to illnesses, and don’t want to make anyone feel uncomfortable.
“All of this makes caregiving an extremely isolating job, which then impacts our ability and willingness to maintain social bonds,” Drew says, noting that the caregiving process naturally “creates space and distance between the caregiver, their social connections, and sometimes even their partner.”
Technology may help people feel connected, but using television or the internet as the only social outlet takes a toll, both mentally and physically.
“Having only one outlet to the world like the TV or internet can affect mental health because people need to feel connection with others. Without that connection, we see an increase in feelings of depression, anxiety, guilt, stress, and hopelessness,” says Tristin Engels, a licensed clinical and forensic psychologist.
For Walilko, having her own care team was crucial in keeping her connected to friends and family. A friend stepped up, to ensure Walilko went out at least once a week. They also arranged to have food sent to the house and enlisted a group of people to keep a mental-health watch going. “They were there whenever I needed them and were also cajoling me to leave the house to see a movie every once in a while, or go to dinner, and also coordinating somebody who could stay with Ed while I was out, so I wasn’t constantly worried about leaving.”
Other ways to maintain social bonds while caretaking include embracing a hobby, going to support groups, and staying connected via text, calls, or video chats.
“Like any job, days off are needed. But as a caregiver around the clock, that can become increasingly difficult to do,” Engels says. She suggests thinking back to the Covid-19 days, and reusing some of those creative ideas for staying in touch with others. Most of all, though, stay in touch with yourself.
“It is impossible to care for someone else if you aren’t taking care of yourself,” Drew says. “Remind yourself that it is okay to ask for help and to admit when you’re having a hard time.” —Jennifer Billock
For Caregivers Seeking Balance
Lean on the resources below to help steady yourself
CHICAGO AREA RESOURCES
City of Chicago Caregiving Support Groups offers support sessions throughout Chicago.
RUSH Health System’s Caregiver Initiative offers family caregivers customized programs to care for themselves while caring for others.
Catholic Charities of Chicago has programs throughout Cook and Lake Counties for caregiver case management and support services.
NATIONAL RESOURCES
Caregiver Action Network provides resources to improve caregivers’ quality of life.
Administration for Community Living has a variety of services to help caregivers.
Family Caregiver Alliance offers resources regarding care partner burnout and stress.
AARP’s Caregiving Resource Center offers a variety of helpful tools.
Alzheimer’s Association shares resources for loved ones caring for those with dementia.
