One of the most difficult things I’ve ever gone through was caring for my son as a baby/toddler with severe eczema. I was trying everything I could to relieve the itchiness and pain, yet my son was suffering. I was sometimes at my whit’s end, not knowing what I could do to help my precious child. To add to the stress of seeing my child suffer, I was constantly watching him, making sure he was not scratching and bleeding. There were rigorous daily skin routines to go through. There were nights of restless or lost sleep.
If you have been in the same situation, you understand what I do: there is a great deal of emotional stress that results from caring for a child with significant eczema.
Impact of Eczema on Caregivers
The significant impact on parents of children atopic dermatitis (AD) is well documented. In fact, one study compared the quality of life of parent of children with eczema to parents of children with various chronic diseases including cerebral palsy, renal disease, cystic fibrosis, asthma, psoriasis, epilepsy, diabetes, alopecia, localized eczema, acne and nevi. Generalized eczema was second only to cerebral palsy in impact on quality of life, followed closely by renal disease and cystic fibrosis.
Parents caring for children with eczema can experience impact in areas such as exhaustion and sleep deprivation, social embarrassment, frustration, helplessness, sadness, depression and guilt. Parents often feel strain due to the amount of time required for eczema care as well as the financial burden of extra medical appointments and purchasing care products.
I remember in nursing school studying about “caregiver role strain,” which can be defined as: “When caregivers find it hard to perform their roles or feel stressed by situations, such as: financial burden, increased responsibility, change in family life, role change.” It basically boils down to excess stress leading to burnout signs like anger, social withdrawal, health problems, sleep problems, or feelings of guilt of worthlessness.
Although caregiver role strain is commonly applied to those taking care of aging or elderly parents, it is also very applicable for and documented in those caring for children with chronic conditions like eczema. Not only is it important to find solutions for your child eczema, but it is vitally important to implement strategies for your own health and well being.
Care for Caregivers
Support can make a huge difference for those with caregiver strain. Knowing that you are not alone is so important. One way to connect with other parents who are going through the same thing is through facebook groups. There are good number of eczema support groups, some specifically for parents. Hearing about the experience of other parents in the same shoes as you and gaining practical tips for eczema care can be very helpful (although please do your research and check with your medical provider about advice you hear).
With the prevalence of eczema and allergic conditions, you may also find a local support group. Again, facebook groups could be a way to find someone who lives in the same area as you. Your doctor or other medical team members may know of a local support group.
Support can also be gained from a close friend or family member, even if they haven’t been in the same circumstance as you. A great person to have on your team is someone who can listen when you need to talk, who acknowledges the significance of the challenges you face with your child’s eczema, and is willing to help in practical ways such as watching your child.
Take Time Away
I remember feeling like I was the only one who could care for my child with eczema. I didn’t want to put the burden of dealing with my child’s itching, bleeding and pain on someone else, even for a short time. Can you relate to such feelings?
While it might be true that a parent is the one who knows his or her child the best and is the best one to offer care, it is also true that when you or I are burned out as parents, it is not a the best thing for our children or ourselves. It’s important to take time away, even short amounts, to recharge.
If possible, find someone else you can trust with your child’s care, someone who is willing to follow the protocols for medication and skincare should a problem arise. If your child does better in your own home, ask if your support person can come to watch your child there. Use your time away to do something that rejuvenates you, so you can return better prepared to care for your child.
Get Your Zzzzz’s
Sleep deprivation is a big area of strain on parents of children, especially young children, with eczema. Unfortunately, there’s no easy way around this! “Work on your sleep” may sound like an impossible suggestion. However, if this is a big source of stress for you, make it a focus of care for you and your child. Methods like a warm bath before bed, wet wrapping overnight, or using a “no-scratch” covering for hands may help your little one sleep better. Make sure the mattress and sheets in your child’s bed are not bothering him or her. If you feel like you’ve tried everything to no avail, you may want to talk to your doctor about using a medicine to reduce itching and help your child sleep. You may also find some helpful suggestions for sleep through support groups.
You can maximize the sleep you do get by maintaining best practices for a good night’s sleep.
Hold on to Hope
This is SO much easier said than done, but I speak from personal experience on this point. Believing that there is no cure and nothing you can do for eczema will quickly lead to hopelessness. When my kids were struggling with severe eczema, what kept me going was my belief that there truly was a way to heal from eczema. I was determined to find it. We were proactive about trying new (and not always easy) methods for healing. The stories of others healing from eczema inspired me. That’s why I now share my own family’s story, which you can find here.
What about you? What is the most difficult thing about taking care of a child with eczema? What strategies help you with your general and mental health?
- A comparative study of impairment of quality of life in children with skin disease and children with other chronic childhood diseases.//www.ncbi.nlm.nih.gov/pubmed/16792766
- Eczema prevalence in the United States: data from the 2003 National Survey of Children’s Health. //www.ncbi.nlm.nih.gov/pubmed/20739951
- Audit: Burden of Eczema. //nationaleczema.org/wp-content/uploads/2016/06/NEA-report-final12_30_2015.pdf
- Caregiver Role Strain. //www.uwhealth.org/healthfacts/neuro/6921.pdf
- How to Use Wet Wrap Therapy for Eczema. //www.eczemamom.com/wet-wrap-therapy-eczema/
- What is Sleep Hygiene? //www.sleepfoundation.org/articles/sleep-hygiene
- Our Eczema Story. //www.eczemamom.com/our-eczema-story-part-1-of-2/