By Erin Sernoffsky
Four years before Rachel of Akron first met Tom, he was diagnosed with an autoimmune disease.
“He even said something like, ‘I like you and I want to see where this goes, but if you’re hesitant to get involved, it’s totally fine,’” Rachel recalls. “But I already knew I was smitten and that I’d be missing out on something beautiful and special if I didn’t take the risk.”
After two years of dating, they married in 2017 and although his symptoms were well-managed, two COVID infections and lasting long COVID symptoms took an enormous toll. Rachel found herself as her new husband’s sole caregiver — managing his daily care, doctor appointments, hospital stays and therapy, all while maintaining a household and full-time job.
“Everything from modifying our routines to handling the day-to-day business of our lives, literally everything in my life felt like a major fire that had to be put out,” Rachel says. “The hardest part was that none of these things were ones I could send delegates to.”
Rachel knew she needed help but didn’t always know what to ask for. Her burnout was significant; however, as is often the case with burnout, it’s hard to recognize until it becomes overwhelming.
I’m lucky because we had a lot of people offering to help,” Rachel recalls, but even so she struggled. “I absolutely burned out…and I didn’t even realize the depths of it until several months after his funeral. It’s hard and scary and painful, and even with support from friends and family, ultimately it’s something we do on our own. I wish I had sought professional counseling sooner than I did (it took me almost a full year), but it helped light a fire under me to find myself again.”
When Breaks are Needed
Rachel’s experience is shared by many solo caregivers, many of whom struggle to find tricks and tools to help them manage care, or who do not know what help is available to them. All caregivers face an enormous responsibility, whether they are caring for a child, aging parent, partner, or other family member or friend.
“People feel a sense of responsibility to their loved one. They want to give back to someone who has given to them, they want to be the one to help, but it is too much to do on your own,” says Tanisha Hill, BSN, RN, CCM, a clinical manager for Western Reserve Area Agency on Aging (WRAAA). Professionals like Hill help to link caregivers with the support they need to give their loved one the best possible quality of life.
Burnout is a very real, persistent threat. Knowing how to keep afloat daily, knowing where to look for help, and what help to ask for are all far more difficult than it seems from the outside.
“Adult daycare can be an incredible resource,” Hill says. “Whether it’s just a couple hours a week or full days, it gives a person a social outlet where they can play games, make friends, take part in art projects, or even just get out of the house and enjoy a meal or a change of scenery. And it gives the caregiver the chance to catch their breath. It’s so important to give them time to get their own responsibilities taken care of, or even get their hair done, relax and recharge a little bit.”
For slightly longer-term help, caregivers can look to respite care, where their loved one can stay in a nursing facility for a short period of time to give caregivers a chance to take care of their own needs, travel, or rest for a weekend, week or sometimes longer. ARCH National Respite Locator Service is an excellent tool to help caregivers find the help they need.
Hill points out that these breaks, whether for the afternoon or a few days, can help restore some of the balance in a relationship and allow caregivers to return to their role as spouse, parent, or child rather than solely feeling like a caregiver.
“There are so many resources to help, from cleaning houses to managing care, to providing company and companionship,” Hill says. “A lot of people just don’t know where to start or what’s available to them.”
For those looking to support caregivers, offering to pick up groceries, water plants or help with laundry are all tangible ways to help that don’t add stress. Or simply dropping off a meal with no expectation of being invited to stay can go a long way to lightening the load.
Rachel advises well-intentioned family and friends to be specific when offering help.
“The caregiver may not know what to ask for, and I’m living proof that decision fatigue is a very real thing,” Rachel says. “When people would say, ‘How can I help?’ it felt like one more choice I had to make, one more problem I had to solve, one more thing that I had to manage.”
“The biggest thing, though, is to remember that you are both people, first and foremost. Anything that makes you feel human is valid and important,” Rachel says. “For us, that looked like keeping as many of our couple-traditions as we could…It really helped us both remember that we were a couple first, and that the patient/caregiver roles were just a small part of that.”
Organizing Life
Because single caregivers are the gatekeepers for everything, it’s especially important to develop personal strategies to stay organized. Small habits make a huge impact.
Downloading a voice record app or purchasing an inexpensive recorder to take to doctors or school appointments is an amazing way to make sure no important details are missed and give the caregiver the opportunity to revisit important conversations in a lower-stress environment.
High-tech tools like Skylight Calendars, a WiFi-connected digital display that organizes everything from appointments to meal plans and shopping lists, or video calls with devices like an Amazon Echo Show can be helpful. However, low-tech solutions are often just as effective.
Hill also recommends seeking help with some of the daily tasks that are easily forgotten or skipped, like medication management. She often recommends families use automatic pill dispensers or coordinate with companies that presort and package pills in individual packets to be opened at specific times of the day.
“Organization was my biggest friend, and also my biggest challenge,” Rachel says. “I had to make a dedicated ‘go bag’ with a notebook and calendar, and I carried it with me everywhere I went.”
This bag can be customized to contain a change of clothes, medication, emergency contact list, or even soothing fidgets, but being in the habit of carrying it everywhere eliminates the need to remember each individual item every time caregivers leave the house.
Seeking Help
Organization and life hacks are important, but no amount of scheduling will make the full-time job of caring for a loved one easy. Asking for help can feel very vulnerable for everyone involved, and even when caregivers want help, many don’t know what resources are available or what to ask for.
“So many of the people we work with feel like it’s their responsibility to care for a parent or a spouse on their own, that getting outside help is letting that person down. But really, getting help is best for everyone. Even something like providing more opportunities for socialization through day programs or companion visits is so important,” Hill says.
For single parents of children with disabilities, finding the right help can be terrifying and overwhelming. Start by looking for online support groups where other parents share what has worked, what resources they have found, and can answer direct questions.
Funding is available through the state of Ohio to help defray the costs of some day camps, after school care and other enrichment activities. The Ohio Department of Education and the Department of Developmental Disabilities are great places to start looking to see what help is available.
Organizations like ARC-Northeast Ohio can help walk parents through IEPs and advocate for services for their child.
For those caring for an adult, a case manager or care coordinator is an important advocate to have on the team. WRAAA runs a no-cost Family Caregiver Support Program (FCSP) in which the caregiver is the client and works directly with a Care Coordinator who helps to determine what services are available, how to access them, and identify funding opportunities.
“It’s all about talking to the patient and the caregiver to find out what everyone needs and helping them connect to those specific services,” Hill says. “Because unless the caregiver is supported, the patient won’t get the care they need, as well. Everyone’s situation is different.”
For individuals caring for adults, Hill recommends reaching out to one of Ohio’s 12 area associations on aging as an important place to start, regardless of the age of the adult. These organizations are often a hub for finding out what help you qualify for, what programs are available, and getting paired with a professional to help coordinate care.
While in-home care such as therapy and nursing services, help with household chores, and even companionship is available, getting a loved one out of the house and into a social situation, when possible, is beneficial for everyone.
