Pediatric palliative care is a specialized, growing area of medicine that focuses on providing comfort and improving the quality of life of children with serious or life-threatening illnesses. It addresses the emotional and physical symptoms of patients with severe conditions – from the time of diagnosis of the illness and throughout the course of treatment. Pediatric palliative care specialists also provide resources to families to help them cope with the stresses of their child’s condition and treatment.
From Nemours' KidsHealth
- Taking Care of You: Support for Caregivers
- Managing Home Health Care
- Relaxation Techniques for Children With Serious Illness
- Caring for a Seriously Ill Child
- Helping Your Child Deal With Death
- How Can Spirituality Affect Your Family's Health?
- Complementary and Alternative Medicine
- Palliative Care
- End-of-Life Care for Children With Terminal Illness
Taking Care of You: Support for Caregivers
If your child has a serious illness, the caretaking that falls to you is undoubtedly intense. But of course you do it willingly. After all, you'd do anything for your child, including switching places in a minute if only that were possible.
Instead you give all that you can, in every other imaginable way. It's harder than anything you've ever done, and honestly, there are moments when the sheer magnitude of what you're up against is so overwhelming that you just want to run and hide.
Ask any parent who's done this before and you'll find out something very important: You're not alone.
The Caregiver's Dilemma
When you're the caregiver of a child who is seriously ill, it can feel as if the whole world is on your shoulders. Your sick child needs you. You may have other children who need you. Your spouse needs you. Your job — however pointless work might seem right now — needs you.
Yet there's only so much you can give before you will feel mentally, emotionally, and physically drained. That's why it's a necessity — not a luxury — to spend some time taking care of yourself so that you can recharge and feel empowered to continue to support and care for your child.
Tips for Caregivers
Many of these tips might seem easier said than done at first, and a few may seem downright frivolous. But to make it through the long haul, consider the wisdom of that air-safety rule about putting your own oxygen mask on first before helping others. Here are some ways to do that:
Take breaks. It's essential to regularly schedule a few times each week — even for just an hour or two — when you can get away while a family member, friend, or a health aide stays with your child. Once away, that time is yours, so don't feel guilty about how you spend it. Nap, read, have coffee with a friend, go shopping, whatever allows you to relax. While you're out, your child will probably enjoy having someone else to talk to and you'll feel refreshed when you get back.
Eat right. It's no surprise that living on coffee and picking at hospital leftovers can leave you feeling tired and run down. If you know you're going to be out, carry nutritious snacks with you, like fruit, granola bars, sandwiches, or nuts. And if friends offer to bring homemade meals to your home to help out, take them up on it.
Exercise. Whether through a brisk walk, a bike ride, or yoga, most people find that exercise helps clear the mind, boost energy levels, and improve sleep. Even 20 minutes can do the trick, so save a bit of time every day to get moving.
Stay organized. Keep all the information you've accumulated about your child's illness in one place, including medication schedules, important phone numbers, and insurance information. When you think of questions for your doctor, write them down immediately so you won't forget. And since dealing with insurance companies can often seem like a full-time job in itself, enlist the help of your spouse or another trusted family member or friend to help keep it all straight. Use a notebook to keep all of the information in one place.
Ask for help. Your friends and family likely want to help you, but might not be sure about what you need. If someone says, "If there's anything I can do…" — and there is — say so. You'd be surprised at how running an errand, doing some laundry, or just sitting and listening to you talk about the day can not only benefit you, but also can make a loved one feel useful.
Find a support group. Ask your child's doctor, nurse, or social worker for information on local support groups related to your child's condition or caregiving in general. If you feel more comfortable sharing anonymously online, then look there. The important thing is to get beyond the feeling of isolation by reaching out to others who've been in your shoes.
Acknowledge your feelings. Your child is sick — of course you have feelings of anger and frustration, and days when you wish you didn't have to deal with it all. Does this make you a bad parent? No, it makes you human. Accept these negative feelings and the often painful fact that no matter how much time or energy you invest in your child's care, you can never be completely in control of your child's health and happiness.
Be aware of the signs of "caregiver burnout." Caregiver burnout is a true state of exhaustion, both physical and emotional. It tends to happen when caregivers try to "do it all" without getting the help or rest they need.
Because caregivers tend to be on autopilot, they're not usually quick to recognize burnout in themselves. Other people might notice the symptoms first, which can include changes in appetite and sleep patterns, withdrawal from social activities, increased anxiety, or emotions that are either heightened (such as excessive crying or irritability) or decreased (feeling empty or unconcerned). Take it seriously if someone you trust notices any of these things in you.
If you feel like you may be experiencing caregiver burnout, depression, or anxiety, explain your feelings and symptoms to your doctor, who may recommend that you see a counselor or therapist (especially one who specializes in caregiver needs).
Your doctor also may encourage you to take a temporary break from your duties by looking into respite care (the kind needed would depend on how ill your child is). Medications for anxiety or depression could be an option, too.
Finally, remember that you are not superhuman. You're a parent doing your best. So give your child your time, your encouragement, your attention, and your unconditional love. Just be sure to save a little bit for yourself.
Reviewed by: Joanne Quillen, MSN, PNP-BC
Date reviewed: August 11, 2016