When your child is sick in the hospital, it feels like you’ve entered an alternative universe. That heart ache hit me like a tidal wave while caring for my desperately ill son in two children’s hospitals for eight months straight in 2015. Scared witless as Crohn’s Disease spread inflammation throughout my son’s digestive track, all I could think about was how to ease his suffering and make him well again. Time was marked from one nursing shift to the next rather than normal day and night.
I admit it. When the flight attendant says, “If you are traveling with a child, please be sure to put your oxygen mask on first so you can take care of your child properly,” I am the Mom you would find passed out in the aisle. Because there is no way I can imagine not putting the oxygen mask on my son first.
My instinct will always be to care for and protect my son first and foremost. When he is very sick in the hospital, I am laser focused on making him well to the point of exhaustion. But I’ve learned the hard way that I have to somehow fit in some self care and coping strategies or hit a wall of stress implosion. Not pretty.
Taking care of a sick child in the hospital is physically and emotionally exhausting, so be kind to yourself. To make it through the caregiver marathon, you need to try to keep up your strength and pool your energy. Here are suggestions for coping, trying to keep your spirits up, and taking care of yourself as the parent.
It was hard for me to admit I needed help. I felt like I was bothering or inconveniencing people by asking for anything. I confided my internal struggle to my wonderful Rabbi, Robert Nosanchuk, of Anshe Chesed Fairmount Temple in Beachwood, Ohio. He wisely asked me if I would hesitate to do anything I could for someone I care about going through something similar. Did I really think I could manage without having help? And what’s the point of having a community if you don’t share the tough times as well as the good times?
So turn to the family and friends you are closest to who are truly supportive. Be honest with yourself about who will be really helpful and make you feel better vs. inadvertently make things harder.
Welcome offers to help with food, keep an eye on your home, run errands, take care of your other child(ren), etc. For food, politely mention food allergies, being vegan or vegetarian, or keeping kosher so that people don’t unknowingly prepare food that your family cannot eat. If someone asks how they can help, mention specific ideas appropriate to your relationship, like would you mind bringing me a salad or picking up a couple of things from the grocery store vs. could you please stay with my child for two hours this week while I go take a nap.
My article on How to Support a Mom or Dad Caring for a Child with a Serious Illness might be helpful to give friends and family ideas.
Taking Care of Yourself
Try to find a time each day to leave the hospital floor when someone else will be with your child even if it is just to take a walk on the hospital main level. Some fresh air if the weather allows is priceless. Exercise can be very cathartic and clear your mind.
Sleep is at a premium in the hospital what with those endless middle of the night vital checks and background sounds and beeps along the hallway. So sleep whenever you can, taking turns if you have a partner, family member or friend you can switch off with. If when you get that chance sleep eludes you, despite your exhaustion, it’s undoubtedly the stress and emotion that can hit hard when you least expect it. Try relaxation approaches like curling up with chamomile tea and soothing music. Then just close your eyes for a few minutes and you might be surprised how soon insomnia turns into well earned sleep. I always set the alarm on my iPhone for the amount of time I had allotted while someone else was with my son so that I could sleep without worrying I’d be late to get back to the hospital.
If you experience any health symptoms or issues while you’re in the hospital for your child, be careful not to ignore important signs. Be sure to stay on schedule with any regular medications you normally take. If you develop a major problem that could have been avoided by keeping to your normal health care routine, you not only risk your own health, you could impact your ability to be an effective caregiver.
Coping Strategies for Your Heart and Mind
Think of guiding sayings you can use to help you get through it. One step at a time, one day at a time. Post some favorite quotes in the room that give you comfort. For example, one of mine from Christopher Robin is “You are braver than you believe and stronger than you seem.”
Consider journaling, whether privately or through a care pages type web site. Writing can help you express your feelings and articulate your worries which can be very cathartic. A web site like CaringBridge or CarePages can give you that outlet while keeping friends and family up-to-date in a private community setting
Try to find humor wherever you can. Your sense of humor and positivity can relieve stress, keep your perspective, and help your child cope. When my son kept getting re-admitted to the hospital multiple times, I would make a game of coming up with the silliest jokes and wisecracks on the first day to help us both keep our spirits up. Just laughing is very therapeutic. This might be the perfect time to stream a goofy sitcom or an old Abbott and Costello or Three Stooges movie.
Whether deep breathing, spirituality, praying, or meditation give you comfort, use them to keep your spirits up and get some rejuvenation and keep your sense of peace and hope, If you belong to a church or synagogue, let them know your child is in the hospital so the clergy may visit you and give you support. The hospital might have therapists and/or social workers who specialize in helping families cope with a hospital stay.
- Seek entertainment to take your mind off things. Reading a mindless novel, stream a favorite show, or play a fun game to distract yourself in short pockets of time between doctors, nurses, medical tests and caregiving.
Handling and Learning about Your Child’s Medical Issues
One of the hardest things is processing difficult news and understanding complex medical issues. Knowing how much my son was suffering, I didn’t want him to see me crying and scare or confuse him. When you feel emotion overwhelming you, see if you can take a walk down the hall to find a quiet place to think and to cry. I asked my child’s nurse to keep an eye out for my son or did it when family was there so he would not be alone. I wrote down the top things worrying me and questions for the doctor. It helped to get the sadness out, take a deep breath, and then go back to his hospital room with a clearer perspective. Plus that list of questions gave me some feeling of control like I could at least try to understand the situation and alternatives as best as I could.
Research the medical issues you’re dealing with but ask your child’s doctors to give you perspective since Dr. Google can give you very scary answers. I tried to only read very reliable sources (i.e. NIH, Mayo Clinic, national nonprofits related to my son’s disease such as the Crohn’s and Colitis Foundation), especially avoiding sites that were like infomercials pitching products or treatments that would magically fix my child for a crazy amount of money.
If you are dealing with a specific illness or condition, connecting with other parents who have coped with the same thing when their child was a similar age can be very helpful and reassuring. For example, I discovered wonderful Facebook Groups for parents of kids/teens with Crohn’s or Ulcerative Colitis, in addition to the nonprofit Crohn’s and Colitis Foundation. Once I shared what we were going through I was grateful to some of our friends who connected us with people they know who had walked the same path. Whether as simple as emailing, facebook messaging, chatting on the phone, or meeting for coffee, hearing from parents who had gone through a similar journey was invaluable. Nonprofits dedicated to the specific condition can also be fantastic sources of information and networking.
What strategies have you found most helpful to take care of yourself through a hospital stay?
I know how hard it can be to live in the surreal hospital time zone. The world becomes the four walls of your child’s hospital room and hospital floor. It can be hard to keep perspective and hope for the future, especially when the prognosis feel bleak. With chronic illness or medically complex children, it is common to have up and down cycles with their health. We cherish the good times when we are at home and do our best to cope with the tough phases. I hope whatever you are going through will get better soon.
So beautifully said, Lisa. Thanks for sharing your experiences. I am sure this will be helpful to many!
Pingback: When You're Worried Your Child Has a Serious Disease: Getting a Diagnosis - Gooseling