In the PICU, all of your child's physical needs will be met by the staff. You, as a parent, are there to provide emotional support, love, and a familiar voice or touch. However, you shouldn't feel as if you have to stay at your child's bedside every minute of the day. Getting away from the commotion of the PICU briefly or even leaving the hospital grounds can help you gather your thoughts.
Staying around the clock with a child who's in the PICU for more than a few days can be both physically and emotionally draining. Although some hospitals let parents spend the night with their child, some do not. Often, hospital staff will encourage parents to go home, get a good night's rest, and return to the PICU refreshed in the morning, which can help them be even more of a comfort to their child.
If the hospital allows parents to spend the night, the decision whether to stay in your child's room is yours. Either way, the PICU staff will support you and reassure you that your child will be well cared for. Whatever you do, make sure you get enough rest to be able to support your child throughout the PICU stay.
While some patients are sent home directly from the PICU, many are transferred to a regular floor of the hospital for further, less-intense monitoring and follow-up care. Still, discharge from the PICU is a significant milestone on the road to recovery. It means that a child no longer needs such an intensive level of monitoring, therapy, and/or nursing care.
But leaving the PICU might also cause some anxiety. It's not unusual for parents of kids who were in the PICU to think, "He was so sick and now he's better. But shouldn't he stay here until he's completely back to normal?" But the doctors and nurses in the PICU won't transfer kids before they think they're ready and stable, and the team on the hospital's regular floor will have the resources necessary to continue guiding your child's recovery.
Caring for a critically ill child is always stressful and difficult. But understanding the people and things in the PICU can help ease your family's stress — leaving you better able to support your child and plan for when the entire family is home together again.
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.
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.
Caring for a seriously ill child takes a tremendous toll on the whole family, and healthy siblings are no exception.
As parents, our exhaustion, stress, and uncertainty about how to respond to the needs of other kids can leave us feeling guilty and drain our reserves — and might tempt us to downplay or ignore the impact a child's illness may have on his or her brothers and sisters.
Knowing what healthy siblings are going through and taking steps to make things a little easier can let you deal with many issues before they unfold.
Family routines and dynamics naturally change when a child is ill, which can confuse and distress healthy siblings. Besides fear and anxiety over the illness, they often have the feeling of loss of a "normal" family life, and loss of their identity within the family.
It's normal for healthy siblings to:
The way siblings express their needs can vary greatly — some may act out, some may try be the perfect child, and many will do both.
Pay attention to any changes in kids' behavior, and talk to them often about how they're doing and what they're feeling. The more room kids have to express their emotions, the less emotional upset and fewer behavioral problems they're likely to have.
Signs of stress in kids can include any changes in sleep patterns, appetite, mood, behavior, and school functioning. Younger children may pick up on parental stress and show regressed behaviors (doing things they did when they were younger and had already outgrown).
Even if you don't see any signs in your kids, you can be pretty sure that changes to their routine and seeing their parents and other family members upset is likely to be causing them stress.
While you may not be able to take away the source of your kids' emotional pain, you can help ease their stress and make them feel secure, cared for, and supported.
These suggestions might help, but it's also a good idea to find support (through counseling, a hospital support group, etc.) to help you take better care of all your children.
First, look forward. If you find yourself feeling guilty for not being a perfect parent to your healthy children, don't beat yourself up — dwelling on the past is not productive. Instead, try to make a point of recognizing your kids' feelings and needs now, and move on from there.
Keep the lines of communication open. Pay attention to siblings' needs and emotions. Encourage them to talk about their feelings — the good, the bad, and the guilt-inducing — and try to read between the lines of their actions. This can be difficult when you're exhausted, stressed, and away at the hospital or clinic for long periods of time, but a little attention and conversation can let your healthy kids know that they're important and their needs matter.
Keep it "normal" as much as possible. Try to maintain continuity and treat your kids equally. Stick to existing rules and enforce them; besides minimizing jealousy and guilt, this also sends a strong optimistic message about your sick child's recovery. And try not to fall into the trap of relying on healthy kids as caregivers before they're ready. Accept help so that your healthy kids can stick to their typical routines as much as possible.
Say yes to help. Accepting help with transportation, meals, childcare, and other daily activities can take some pressure off of you so that you have the emotional reserves to be there for your family. You'll also be teaching your kids a valuable lesson about accepting generosity from others.
It's OK to have fun. Enjoying yourself and having fun (for a change) can go a long way toward relieving stress and recharging your battery. In addition to trying to keep a normal schedule of activities, whenever possible set aside some time for your kids to spend with friends and family without focusing on the illness. You also can set aside one-on-one time with your healthy kids where the focus is on them and everything that's going on in their lives other than their sibling's sickness.
Be patient with regressive behavior, especially on the part of younger kids, who may have trouble making sense of emotions. At a time when parents' nerves are frazzled, it can be hard to stay patient and attentive, but it's essential for siblings. However, it's not a good idea to let kids — healthy or sick — behave inappropriately or get away with behaviors that you would not have allowed before the illness. Rather than make a child feel relaxed, this can increase anxiety, jealousy, or feelings of abandonment.
Include siblings in the treatment and care. Including healthy kids in some of the doctor visits and hospital sessions can help demystify the illness. They also can benefit from connections to other patients' siblings. And giving healthy kids specific, non-threatening "jobs" can help them feel like an important part of the treatment process. Encourage their involvement and let them lead the way — maybe they want to help with physical therapy, for example, or make cards, books, or videos to keep a hospitalized child connected to life at home and school. Many hospitals offer sibling counseling groups, workshops, and other programs that can help your healthy kids feel less alone.