caregiving Archives

Family caregivers come in many forms. They can be partners, children, siblings, parents, grandparents, or any relative who gives of their time to help someone in need.

In 2020, the United States had more than 53 million family caregivers, and that number increased during the COVID-19 pandemic due to several factors, including closing adult day centers, a decreased professional caregiving workforce, and families taking their loved ones out of long-term care for fear of contagion. Currently, about one in five Americans is a caregiver, and their challenges are legion.

In a recent “Light After Loss” Facebook Live episode, Modern Loss’ Rebecca Soffer spoke with Rebecca Hobbs-Lawrence, a grief services coordinator and head of the Dougy Center’s Pathways program, which helps families when a family member is living with an advanced serious illness. Here are some key takeaways from their conversation.

Light After Loss Ep. 18: The Importance of Caregiving

What makes caregiving so challenging in the United States?

Many countries provide a wide range of publicly funded access to caregiving, which translates to equal access for all. When money is no longer an issue, everyone can have access to quality care.

In the United States, hiring a professional caregiver can be an enormous financial burden. If the cost is too high, family members must decide if they can afford to take the time they need to provide the care themselves, or if they can figure out a way to keep their current employment while also being a caregiver. Long-term care insurance is available in the U.S., but it needs to be set up well in advance of actually needing such a thing and can also only be used for assisted living.

How can intensive family caregiving throw off the balance of someone’s life?

Caregiving can have a wide-ranging impact, potentially affecting everything from one’s emotional and mental health to his or her financial wellness. Some people work extra jobs in order to make additional income; others take on more work outside the home just to have a social outlet that they don’t have in their caregiving role. Family caregivers — especially ones filling that role in the long term — can see their lifetime earning potential take a significant hit. Some people burn through their retirement savings so they can cover the expenses of caregiving, and many give up precious access to friends and leisurely pursuits.

caregivers with young woman taking walking with older woman

What are some feelings caregivers struggle with?

Caregiving is an emotionally complex experience. Those who provide family care are not always doing a job that they want to do — be it temporary or long term — and the emotions they can feel can be heightened if they are isolated in their roles at home. They also might struggle with hypervigilance about all the details that they need to take care of, guilt over wishing they were somewhere else (even when they are somewhere else), or resentment toward other family members who are not helping as much.

How can caregivers find support?

If you’re a caregiver and are feeling overwhelmed in the role, seek help. The best advice is to start small, especially if you haven’t made a practice of self-care in your caregiving role.

Here are six ways to get the support you need as a caregiver.

1. Give yourself permission to have a break

This can include making yourself take five-minute timeouts. Being able to take even a short rest and do some deep breathing to get oxygen back into your body can help your mind to sharpen and reset.

2. Make sure you get enough hydration

This may seem obvious, but when you’re continually focused on someone else, it’s easy to forget your own basic needs.

3. Focus on good nutrition

You need stamina — both the physical and mental kind — to endure the caregiving marathon you’re in, and that means giving your body the proper nourishment. Instead of skipping meals and snacking whenever you have a free moment, make sure you sit down for solid meals throughout the day.

4. Get some mental health support

Are you dealing with a cancer diagnosis, or Alzheimer’s? It can be hugely helpful to know you are not the only one in your situation. There are many situation-specific support groups that can provide help, both virtually and in person. Organizations such as The Dougy Center offer peer support groups as well.

5. Ask others for something specific

Do you need someone to pick up your kids from school? Fold your laundry? Clean your house? Reach out to friends or other relatives for assistance. The sooner you ask, the sooner you will get the help you need.

6. Offer to do something specific for a caregiver

If you’re someone supporting a caregiver, instead of saying “I’m here for whatever you need,” try something like “Do you need groceries picked up?” or “Do you need gas put in your car?” Everyone has something specific they can easily do for someone else, and doing so can make a huge difference in the life of a caregiver.

This article was authored by ModernLoss.com, which offers candid conversation about grief and meaningful community throughout the long arc of loss.

When her friends were riding bikes and skipping rope, sixth-grader Julie took time to hang out with Clara, a lonely old woman who’d sit on her porch across the street from Julie’s house, watching life go by. And that’s when a life of caring began.

“She gave me the foundation and prepared me for what my life would become in the future,” says Julie Wilson Kilbarger of Lancaster, Ohio, about 30 miles southeast of Columbus.

“She was in her 80s, and I believe she had been a banker in our town and was very well known. I just started going over to talk to her on her front porch and slowly became more and more of a caregiver to her,” she says. “I would make sure she had groceries and clean for her. She talked to me about boys, school, our Catholic faith, and genuine love. Clara gave me love and the true meaning of kindness, and I learned to be selfless.”

Their friendship grew, and Julie was a carer for her friend until junior high when Clara passed away. “I actually named my daughter Claire after Clara, because she had no children and I just loved her so much,” Julie says. “Her heart was so beautiful and faithful. I’m sure I needed her more than she needed me.”

Julie went on to Ohio University to study communications, and she was an overnight caregiver for another elderly woman for a few years at the same time — “I always loved geriatrics.” Next, she became a social worker and worked with people who had mental challenges and needed assistance.

More than a parent

After she married and started a family, though, her vocation as a caregiver was pushed into overdrive. She has three children who were all born close together — Kyle, who is now 27, Andrew, 25, and Claire, 23. When Andrew was 4 years old, he was diagnosed with Duchenne muscular dystrophy (DMD), a rare and fatal neuromuscular disorder that’s one of the most aggressive forms of muscular dystrophy.

Caregiver with a young man in a wheelchair at a medical conference. — Andrew Kilbarger

While a discovery like this would undoubtedly be a devastating shock to any parent, as she looks back, Julie says, “It’s been a wonderful journey, taking care of him and watching him grow into this amazing young man.”

Andrew is now 25, and the average life expectancy for someone with DMD is in the mid to late teens. “We were able to connect with one of the top five researchers in the country, Dr. Jerry Mendell at Nationwide Children’s Hospital here in Columbus, and we have been on the journey with him,” Julie says.

“Andrew became one of the first in the world to go through a dystrophin gene transfer.” That was when Andrew was just 8 years old in March 2006. It was a milestone for Dr. Mendell too: He was the first to inject microdystrophin, a shorter version of the protein that people with DMD are lacking, into a patient when he completed the procedure on Andrew that day.

Andrew and the Kilbargers’ willingness to try innovative experimental treatments has helped Dr. Mendell advance his pioneering gene therapy work, and in 2019 the FDA approved his cure for spinal muscular atrophy (SMA). It was the first FDA-approved systemic gene therapy.

Now Andrew is an ambassador for a new cell and gene therapy organization that Children’s Hospital created. “They named it after Andrew and this little girl that it cured [of SMA], Evelyn Villarrea,” Julie says. “It’s called Andelyn Biosciences.” Although a cure for DMD has not yet been discovered, Andrew takes satisfaction from the fact that his involvement in research has helped other children, like Evelyn.

Love across the generations

Of course, all the excitement about Andrew’s crucial role in this cutting-edge medical research doesn’t mean it’s been an easy road. “It’s just been a process, a lot of doctors appointments,” Julie says. “He stopped walking at the age of 12, so he’s not mobile, and I make sure that he has all his needs met.”

Julie’s parents moved close to her when Andrew was diagnosed so they could help out the family. Years later, though, illness made living on their own impossible, so they moved in with Julie.

“I watched my dad and his siblings keep his mom at home as long as he could, and I watched my mom take care of her mother at our home as long as possible,” Julie explains. “And I just knew that I wanted to do that for my parents and be the one to take care of them and comfort them and love them and coddle them and care for them, because I’ve watched it and that’s what I love doing.”

“I don’t think I do anything special. To me, this is my life, it’s normal. I love my parents and I love my children and I do what is needed.”
Julie Wilson Kilbarger

Julie, 53, left her job in 2017 and stayed home for a year and a half — before returning to work — caring for her parents and Andrew. Her mom, Hannah, 81, finally had to go into a nursing facility when her aggressive dementia made home care impossible. “I do my mom’s laundry and I decorate her room to make sure it looks pretty for her. And sometimes I do her hair or go over and feed her,” Julie says. Her dad, Bob, is 87 and has his own medical challenges and still lives with Julie and Andrew. The couple recently celebrated 63 years of marriage.

“I don’t think I do anything special,” Julie insists. “To me, this is my life, it’s normal. I love my parents and I love my children and I do what is needed.” She admits that she’s puzzled when friends and family disagree and say she goes above and beyond and inspires them.

Sudden tragedy

Julie suffered a heartbreaking loss in January 2022 when her fiancé, Scott, collapsed and died at their home. He was just 50. Julie’s father found him when he returned from visiting her mom. “We’d been together for almost nine years,” she says. “He was a good soul — when we met in July 2013, he didn’t run after finding out about my caregiver responsibilities.”

In fact, Scott embraced them, helping out where he could. “He actually would pitch right in with Andrew with restroom needs and making dinner for Andrew and my father, and he helped with cleaning and laundry too,” Julie says.

She’s still reeling from losing Scott and his emotional support and love. “He was my shoulder to cry on when the doctor appointments were not the best with Andrew,” she says. “He held my hand all the time and gave me words of encouragement. We did everything together, and we loved deeply together.”

Creating time for self-care

Caregiver family posing for a photo outside. — The Kilbargers. L to R: Claire, Jennifer Beyer (Kyle’s partner), Andrew, Kyle, Bob, and Julie

With such a lot on her plate, both practically and emotionally, Julie knows she needs to make time for herself. “Self-care is obviously super, super important,” she agrees. “But you have to find what works for you.”

For Julie, giving herself some quiet time in the morning is essential. “I need to start my day with a grateful heart that I’m waking up,” she says. “The first thing I do every morning is pray and read my reading for five minutes, and it sets my tone for the whole day. Maybe that’s why I’m so happy.”

She admits that for her, doing the dishes and mopping the floor are therapeutic too, “because I’m a clean freak, and that makes me happy.” But she also makes time for a dinner out with her friends, or grabs 10 minutes in the evening and sits on her patio with a glass of wine, watching the sun set over the fields at her house. “Finding time for yourself, finding that five or 10 minutes of happiness per day, you have to make sure it happens.”

Julie is delighted that Kyle and Claire live close by too and says she’s proud of all their achievements. Kyle is a junior superintendent at the Lancaster Golf Club in Ohio, and Claire is a talented artist who works on website design for a Midwest clothing retailer.

Preparing for the future

Going forward will be challenging, as Andrew now is in cardiac heart failure. “So we are dealing with that,” Julie says, talking about scans and meeting with the heart specialists. The palliative care team has also encouraged Andrew to start writing down instructions for and making decisions about end-of-life care.

Julie says their Catholic faith has given them strength. “Andrew has grounded himself, and he’s gone through the grieving process,” she says. “He says, ‘I know I’m going to die, but I know where I’m going, and I’m okay with that.'”

She is full of admiration for Andrew’s approach to life and his disease: “He asks questions, he researches, he looks, and he understands,” she says. “He’s very, very intelligent — DMD doesn’t affect your mind. Sometimes he’s stronger than me.”

Caregiver. Outdoor patio with twinkly lights. — Julie’s beloved front porch.

And that’s saying something — Julie is clearly resilient and so strong herself. Her positive attitude is remarkable. “It could be so much worse,” she says. “I’m just so fortunate and so lucky: Andrew is still here; I still have my parents; I’m able to walk and talk and take care of stuff; I have a car, the house; I can feed my family. I’m just so grateful.”

Tag: caregiving

6 Ways for Family Caregivers to Get the Support They Need