Caregivers Share Experiences, Struggles, and Advice

By Kylie Akins, Communications and Media Relations Specialist, Craig Hospital

Since the COVID-19 outbreak began, people around the world have experienced jarring changes. It seems that no community has been left untouched by the impact of social distancing and stay-at-home orders. Caregivers of people with brain injuries already face a distinctive set of challenges in their day-to-day lives, and a pandemic has added a difficult new facet to their routines, activities, and wellbeing.

Meagan Beard, LCSW, an outpatient clinical care manager at Craig Hospital, has gotten calls from many of her patients’ caregivers looking for support during this unprecedented and challenging time. “We tell our patients to go out and live life when they leave our hospital, to use community resources, get to know people, create social networks. But they can’t do that right now,” Meagan says. “It’s hard to provide enough encouragement when resources aren’t there at the moment. I can only imagine how families are trying to manage their loved ones and their families with all of the uncertainty. These caregivers do so much for their loved ones, and we at Craig just want to support them in whatever way we can.”

Cindy Slack, a retired registered nurse living outside Denver, Colorado, serves as a full-time caregiver to her 27-year-old daughter, Lauren. Lauren sustained a traumatic brain injury in a car accident in 2018 and has had a long journey of recovery that continues to this day. She has made much progress since her days in early rehabilitation at Craig Hospital, where she arrived unable to speak or walk. Now, Lauren often walks unassisted and is back to her talkative, social personality, but she still needs help with her daily routine.

Before COVID-19, Cindy’s typical days with her daughter were filled with weekly physical therapy appointments, events with local community groups, social visits with friends and family, and keeping up with the medical care Lauren needs to continue her recovery. Lauren is doing well today, but Cindy recognizes that it took continual therapy to get her to this point – and they aren’t done yet. Lauren was going to return to Craig Hospital in April for weekly outpatient therapy, and her family was looking into continuing treatment for the contractures in her hands before COVID-19 began spreading throughout the U.S. All that stopped when the outbreak began.

For the past six weeks, Cindy and her daughter haven’t left their house except for walks around their neighborhood that stand in for some of Lauren’s physical therapy. “It’s hard to feel like life has stalled but we understand it is needed,” shares Cindy. “We’re nervous about contracting COVID-19. My husband and I are in our sixties, and if one of us were to be stricken with this and needed hospitalization, it would be very hard for the other one to do everything needed for Lauren. Lauren is also considered high risk, so limiting her exposure to the virus is critical.”

The social changes have been an especially hard part of the COVID-19 outbreak. Cindy describes her daughter as a social butterfly. While Lauren has been using video calls to connect with her friends, she says it’s just not the same. Cindy had planned to go on a caregivers’ retreat this summer, but that was canceled along with other plans to connect with friends and family.

After going through a recovery like Lauren’s, Cindy knows that a strong support system is critical to the recovery process. “Lauren’s done well with all the people who have been there to support us. All of the positive thoughts in the world, the compassion – they have been critical for us in this two-year journey, as much now as back then. We still need all that.”

Cindy says her family is making the best of it. Though life may look drastically different, their family is enjoying spending more time together right now. They’ve had more time to work on some of Lauren’s goals, like becoming more independent in the kitchen, and the time at home has reminded them to be grateful and has given them the chance to have deeper, more meaningful conversations.

“It keeps you aware of what you have. I have family in Detroit, and the city has been hard hit by the virus. Friends and acquaintances have passed away. When it hits you that close, you reach in for the gratitude,” Cindy says. “I look around, and the dust on the floor isn’t bothering me today. We are healthy today. We are putting things in perspective.”

Her advice for other caregivers: “Take time to breathe. Meditate if you can. One thing I’ve heard a lot from people at Craig is ‘you are where you’re supposed to be.’ I still have to keep telling myself. I feel like there is more I could be doing, but I have to stop myself and say, ‘I’m okay where I’m at.’ I can’t do everything. I’m where I need to be.”

Not too far away, caregiver Ronda Romero and her daughter Brittany have also experienced the impact of the stay-at-home order in Lafayette, Colorado. When Brittany finished her inpatient rehabilitation at Craig Hospital in 2018, after she sustained a stroke during an emergency brain aneurysm surgery, she and her children moved in with Ronda, who became caregiver to them all.

When she first came home, Brittany struggled to communicate and take care of herself and her children, so Ronda and several others in their family stepped in to take care of her around-the-clock, turning Brittany in her bed every two hours overnight, helping her with activities of daily living, caring for her young baby, and keeping her teenager in his school routines. Today, Brittany is speaking again, though still struggling with aphasia, and has taken over some of her self-care. But the weight of social distancing has been heavy in their house, especially for Ronda, who lost her husband of 38 years unexpectedly just weeks before Brittany’s stroke. Ronda and Brittany have many family members who live nearby, but COVID-19 has halted their ability to visit in person.

“It’s been a big change. Sometimes as a caregiver, it gets lonely, even though you know you’re doing this for all the right reasons. In my situation, I lost my husband, so I just think I felt every emotional – frustrated, angry, happy, sad. And yet, when I see that Brittany is doing so much better, I’m grateful for that,” Ronda says. “Before, we went places, we did things. I do hope that opportunities can arise that we can explore things for Brittany to do. There are days she says, ‘I just want to go somewhere.’ And you try to redirect that request. I think she understands that there’s something very serious going on, that people are getting sick and dying from this. I don’t know if she understands how long this may carry on and how to deal with it.”

In the meantime, Ronda has found ways for her family to enjoy connecting over dinner, games, and simply sitting on the porch to talk – something they haven’t had as much time to do before this. They still celebrate birthdays and other occasions, but it’s done through video calls now. She also reaches out to Brittany’s Craig Hospital physical and occupational therapists for at-home exercises her daughter can do, and she texts with a caregiver she met during Brittany’s rehabilitation at Craig.

“I’ve reached out to her to see how they’re doing and to get ideas and see how I might be able to help Brittany. Puzzles, games, walking – we’re doing all those things,” Ronda says. “If anything, it’s nice to hear that they’re doing so well. It just kind of reinforces why we’re doing this labor of love.”

Former Craig Hospital patient Brittany visits with her rehabilitation team.

Ronda’s advice for other caregivers: “Be patient. We’ve come so far, and once we get past this, we’ll continue to soar and get back to some normalcy. Hang in there. Love one another. We have our faith and we pray; we’re just thankful for every day and everyone.”

If you are a caregiver and are looking for support, please visit craighospital.org for free online resources. Craig Hospital’s Nurse Advice Line is also available to help provide advice and information for people across the country living with brain and/or spinal cord injuries, their families, caregivers, and healthcare providers. You can contact the Craig Nurse Advice Line at 1-800-247-0257 or 303-789-8508.

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This article originally appeared in Volume 14, Issue 2 of THE Challenge! published in 2020.