8 Ways to Care for Caregivers
By Carly Bowers
Growing up, my life was neat and tidy. So many things were clear-cut and simple. For so long, I was a student, a daughter, and a friend. I played those roles when the time called for it, and it seemed easy to me. Then I became a mom and suddenly was thrust into a world in which I was everything to my precious girl. I wasn’t just her mom; I was her chef, nurse, chauffer, teacher, disciplinarian, friend, and number one fan.
Then I got married, and roles became even less neat than they once were. I became a wife, friend, partner, co-decision-maker, and once again—a number one fan. Then my husband, David, suffered a severe burn injury, and the roles swirled and melded more than they ever had in my life. I was now a mom; with all the responsibilities that role brings, a wife; with all the responsibilities that role brings, and a caregiver. This was uncharted territory for me, and adjusting to this new role was one of the hardest things I’ve ever done. Juggling all these roles was exhausting!
Most people, (including me), who are called to care for a family member are not trained professional caregivers—we were just thrown into this role because of life’s unexpected twists and turns. We try to do our best, but sometimes feel like we aren’t doing it well, or because we don’t have the necessary tools, we burn out because of the stress and exhaustion.
Here are some helpful hints I’ve gathered from my own personal experience on how to take care of yourself when you’re caring for a loved one. I hope to share some practical ways to care for yourself if you are a caregiver, or offer ways to help a friend or family member who has taken on the daunting responsibility of being a caregiver.
- Learn as much as you can so you can be your loved one’s advocate. Trust your instincts. Speak up if you need to. If you have a concern or notice something that just doesn’t seem right, it is okay to speak up—and do so immediately. You should speak to someone that is directly involved in the care of your loved one, such as your doctor, physical therapist, burn nurse, or nurse manager. You should be as specific and clear about your expectations as possible, so the hospital knows how to help. Most hospitals do want to help resolve your concerns as quickly as possible.
For example, if you see something with a wound or bandage that doesn’t seem quite right, ask for someone to specifically check on it and give you options for monitoring or treating it. Or if you are concerned about being ignored or mistreated—it is okay to be assertive. When David was in the Burn Unit, there was an aide that was a bit brash and tended to be a little too rough with her patients. I went to the Nurse Manager of the Unit and explained my fears and concerns and told her I didn’t want this particular aide working with my husband. Ever! My concerns were heard and changes were made. But, if you don’t receive the resolution you need, contact the hospital’s customer service or patient advocacy office for further resolution. You can seek additional resolution or assistance after your loved one has been discharged from the hospital, too.
- Get rest, eat, and get some fresh air every day. When your loved one has been admitted to the hospital, the whirlwind of activities occurring in the hospital and ongoing responsibilities at home can be overwhelming. In order to handle the increased demands and stress on you, be sure to:
- Eat regularly
- Take a break and go for a walk. Simple exercise and activity can help alleviate both the physical and emotional impact of stress to your body.
- Go outside and get some fresh air. Just shift in the physical setting (from the hospital room) to a different setting can help give you a “mental break”.
- Set up a schedule for needed sleep! Sleep is critical for your physical and emotional health and will help you maintain your physical and emotional strength, so you can best care for your loved one. Finding family or friends that help with the rotation of coverage in the hospital is one way to be sure you can get some needed rest.
A family friend would make sure I did these simple things when David was in the hospital. They might seem like no-brainers, but when you’re in the waiting room it’s easy to get caught up in the stress of the moment and not take care of yourself.
- Take Care of yourself physically, emotionally and spiritually. Meditate. Pray. Take up yoga. Watch an inspiring movie each week. Pick what works for YOU. It sometimes felt like I was being selfish by putting my needs ahead of David’s or my kid’s needs. However, if I never took care of myself, I wouldn’t be of any use to any of them. Remember that for all the hours of each week you dedicate to others, you need to dedicate a few here or there for just you. It’s not being selfish—it’s being practical. I really like the saying, “If Momma ain’t happy; ain’t nobody happy.”
- Help your loved one maintain as much of their independence as possible. When you allow your loved one to do some things for themselves, it helps them maintain a sense of dignity and control and it allows you to do one less thing. I used to purposefully turn my spouse’s t-shirts inside out when I was folding laundry so he would have to turn them the correct way before trying to dress himself. I wasn’t doing this to be mean. He needed to move his hands and arms and this was a way he could get some extra therapy in but it also gave him a sense of accomplishment as well. I also remember how hard it was to stand back and watch David struggle with feeding himself. It was such a slow and painful process. But I knew he had to do it on his own and that I couldn’t simply swoop in and do it for him. I needed to find times when it was safe for me to step back and let him do things.
- You don’t have to do it all. Ask for help from family and friends. And better yet, be willing to accept help! Trust me, I know this is not an easy thing to do! We like to be the one helping others as opposed to having people help us—but don’t let pride get in the way! Accept assistance with transporting kids to their activities, allow church members or friends drop off meals, and accept offers to help with yard work, housework, or even laundry. Be sure to assign the kids appropriate tasks.
If possible, consider hiring medical staff or other professionals to assist with the home health care requirements such as daily wound care, physical therapy, and bathing. We hired aides and nurses to assist with these tasks because I needed to step back from solely being in “nurse-mode” all the time—and it allowed me the opportunity to step back into being David’s wife.
- Get support from counseling or support groups. It is difficult to effectively care for your loved one if you are suffering emotionally and physically, too. Find a network with others who’ve experienced a similar situation. It just helps to know you’re not the only one that’s ever been through this. We found the Phoenix Society for Burn Survivors within the first year. Phoenix Society offers Phoenix SOAR, a program that provides burn survivors and their loved ones with support from a trained peer supporter – someone who’s “been there.” Teaming up with them gave us an instant sense of community. We belonged simply because we’d all gone through a similar experience. I didn’t have to explain anything to anyone because they knew what we were struggling with on a daily basis.
Don’t hesitate to seek professional help from you physician or other appropriate professional if you are struggling with emotions that feel “out-of-control,” emotions that don’t seem to be getting better, or physical signs of illness or stress. Remember that it’s okay to ask for help! For information about how to connect to a Phoenix SOAR peer supporter go to http://www.phoenix-society.org or call the Phoenix Society at 800-888-2876.
- It’s okay to have feelings of anxiety/worry, anger, guilt, fear, despair… don’t try to hide or suppress your true feelings. Deal with your feelings. Grieve over what you’ve lost. Find what is healthy and fits you best in terms of expressing or coping with your feelings. This can include practices such as talking with a close friend, writing a list of fears vs. realistic options, or writing in a journal. I kept a journal to try to sort out my feelings. Sometimes I didn’t feel like I could voice my feelings to anyone because I wanted to make sure everyone thought I was coping and doing well. But in order to deal with my emotions, I needed to release them on paper. This practice helped me to not suppress my emotions.
- Try to stay connected to your friends and life outside of taking care of your loved one. It’s okay to take a break, as hard as it might seem. Don’t cut yourself off from the outside world, which is tempting because you are so overwhelmed with everything that needs to be done. Ways to connect:
- Go out for lunch with a friend or have them bring lunch to you to just visit.
- Call a friend, parent or other close relative just to chat. Take time to reach out and hear a friendly voice.
- Take a mini-trip. (After David was out of the hospital, a friend arranged for me to take a two day mini-trip to her home. She set up spa treatments. We went to dinner. While I couldn’t forget everything that was going on back home, it gave me a mini break for a few special days.)
- Try a “Girls Night Out & Guys Night In”. Our friends pampered us occasionally; the men staying at the house with David, grilling steaks and watching action movies, while I went out to dinner with my girlfriends. These can be memorable moments that give you and your spouse a chance to experience laughter and “normal” social gatherings.
Although this list is simple, my prayer is that it may offer you some practical help to a situation that may seem too big to handle. Taking care of others is no small task, but it’s a precious one, and it’s important for caregivers to take care of ourselves so we can continue to take care of our loved ones. If we are unhealthy, we can’t meet the needs of others.
Carly Bowers is the wife of a burn survivor and founder of Bowers Ministry. Her husband, David, was severely burned in an oxygen flash fire in 1999 and was not expected to survive his injuries. Together, they have recently co-authored a book titled, “Walk Through Fire: One Couple’s Journey of Finding Joy in the Midst of Tragedy.” David and Carly are long time volunteers with the Phoenix Society for Burn Survivors and love to travel and share their story with groups. For more of their story visit their website at www.bowersministry.com