Addressing Sleep Issues

Sleep problems in a child undergoing treatment for cancer may result from:

Feelings of Anxiety and/or Depression

The diagnosis of cancer and fears about what the treatment will be like can make it difficult for you and your child to fall asleep.

Environmental Noise or Change

Being in a hospital, Ronald McDonald House, hotel, or other unfamiliar location may make it difficult to sleep. Studies have shown that the number of times someone enters or leaves a child’s hospital room at night directly relates to the tiredness the child reports.

Lack of Activity

Your child is used to being active, walking, playing, and running, all of which tires him or her out. In the hospital, the lack of activity may make it hard to fall asleep. A program to help hospitalized children receiving chemotherapy increase their activity and sleep better (Hinds et al., 2007 b) uses regular exercise on a stationary bike to help kids get some exercise to help them sleep better.

Medication

A number of drugs given to young cancer patients, especially steroids, can interfere significantly with a child’s sleep and behavior (Hinds et al., 2007 c).

If your child doesn’t sleep:

• You may not sleep;
• He or she will be more irritable, less responsive, more frustrated, bored, and unhappy; and
• He or she will be less likely to take all their medication.

If you don’t sleep:

• You will be less available to your sick child;
• You will be more irritable and more easily frustrated and impatient;
• You will feel less able to take in the important messages you receive about your child’s care and less clear in asking questions, making decisions, being patient with your sick child and your other children and spouse;
• You may get angry more easily at hospital staff; and
• You may resent that the child’s other parent is sleeping at home (if you are in the hospital).

Signs to look for:

• Your child doesn’t want to go to sleep at night or tries to avoid bedtime;
• Your child is complaining about having trouble falling asleep and/or waking up frequently during the night;
• Your child is sleeping more during the day than you feel they should even with the medication they may be taking;
• Your child complains of feeling more tired and sleepy during the day, even when medication is considered. Sometimes, when your child is on many medications, or the dosage has just been changed, it is difficult to know whether your child is reacting to the medication, having sleep problems, or feeling depressed. When this occurs, talk to the doctor to sort this out.

Helping Your Child Sleep

• Make the medical staff aware that you think poor sleep is a significant problem your child is having. Ask if any of the medications your child is taking make it difficult to sleep, and if so, find out how other families have coped.
• See if there is a psychologist or social worker who can work with you and your child to try to figure out first what is contributing to the sleep problem and then to find a way to make it better.
• Talk to your child about why it is important to find a way for them to sleep better. Ask him or her to think of things that would help them fall asleep more easily, such as a fan in the room. Try to work out a technique to help your child deal with worries and how to reduce them at bedtime. For example, you could use worry dolls where your child assigns each small doll a worry. The dolls are then placed into a box for the night, where they will work on the worry and take it away from your child for the night. Let your child decide whether he or she wants to talk about their worries – or not.
• Talk to other parents about how they have handled sleeplessness either in themselves and their sick children.
• Consider ways to make your child more comfortable. Bring in sheets, pillows, stuffed animals, books, tapes or CDs that your child goes to bed with at home, and establish a bedtime routine in the hospital.
• Consider talking to your doctor or someone at the hospital about whether there is any medication that could help you or your child sleep better.
• See if there are exercise programs or other programs to help children get tired enough for bed at a reasonable hour and to fall asleep (Hinds 2007 b) and if so, find out how to enroll your child in the program.
• Consider alternative remedies, especially melatonin, an over-the-counter compound that is often used to re-establish sleep rhythms. Do not give your child any medication or alternative product without talking to your child’s pediatric oncologist.
• Ask if there is someone at the hospital who can work with you and your child to make a bedtime relaxation playlist. An iPod may be helpful right before bedtime to listen to the relaxation playlist. You should also discuss with any other family sharing your child’s room the best time for lights, TV, radios, etc., to be turned off.
• If your call to home typically comes right before bed, consider making it earlier, so it is not so exciting (or upsetting) to your child before bedtime.
• Sometimes it is helpful for children to write or draw about their worries or concerns in a journal during a quiet time before bed.
• Limit caffeinated drinks. If your child drinks caffeine in the afternoon, it can disrupt his or her sleep that night.
• Create a routine. Just as you probably have a bedtime routine at home it’s good to get into a routine as much as possible while in the hospital. Routines help your child understand it’s time for sleep.
• Create a quite place for sleep. Although there are many noises you cannot control in the hospital (machines beeping, people in the hallway), there are some things you can do to keep your child’s room a quiet space for sleep. Keep the TV off during sleep times. If your child loves to watch a certain show, try to either record the show or turn off the TV as soon as the show ends. If your child likes to have the TV on to drown out the noise of the machines, consider playing soft music instead or using a “white noise” sound machine.
• You may want to work with the nursing staff to see if nighttime checks can be consolidated to reduce the likelihood that your child will wake up once asleep.

Helping You Sleep

• It may be helpful to talk with the hospital social worker, psychologist, or psychiatrist about your sleep problems. They may be able to help you understand why you are not sleeping and develop a plan to relax so you can sleep. Meditating, or imagining a relaxing place may help you relax enough to fall asleep.
• Talk with your doctor or a psychiatrist about whether using melatonin or any sleep medication would be useful.
• Sometimes parents at the hospital worry that if they sleep too deeply, they might miss a call if their child doesn’t feel well. Work out a plan with the nurses to determine what you want to be called for. Then you may feel able to get the sleep you need and know you will still be available for your child when needed.
• If possible, work out some time at home, so you can sleep in your familiar surroundings and your own bed on some regular basis. This may allow you to get a better night’s sleep at least every few nights without hospital noises. If you can, get some exercise – take a walk outside the hospital or climb the stairs. If at home, ask a friend to stay with your child for an hour and see if you can find time to go to the gym or for a swim. Exercise will help you feel – and sleep – better.

The Patient in the Other Bed

Getting to know other patients and families in the hospital or clinic can be a very gratifying and relieving experience. You can learn a lot about managing the cancer experience this way; however, there can be times when it feels like this backfires. If a child you are close to gets very sick, relapses, or dies, it can be tremendously upsetting to you, your child, and the rest of your family.

It may be hard to know how to help your child and how to keep your own worries and sadness from making things worse for your child. It is OK to try to differentiate your child’s situation from that of the other child. If they are more similar than different, you may need to acknowledge that sometimes we don’t know why things go badly for one person and not for another. In this case, it is helpful to reinforce that many children with cancer do well.

When another child is sick or dies, it may bring up questions for your child, including ones that can be difficult to hear and respond to. Get support from your partner, the medical staff, and the mental health staff if you are finding it hard to answer your child’s questions on your own.

It is also possible that your child will shut down a bit and withdraw for a while. This is normal, too. It is important to give your child some space to adjust to this scary news and to tell him or her you will be there when he or she wants to talk – or that they could talk with others if they prefer. If they are still not willing to talk about it a few days later, you might want to talk over your concerns with the mental health or nursing staff.

It may also be difficult to know how to talk to the parent of a child who is not doing well. Parents, even of children who die, are often reassured by seeing children who do well since it makes them feel that they did the right thing in following the treatments. Usually, just saying something simple or writing a note saying you are sorry for whatever has occurred and you are thinking about them is enough. If you are in the hospital together, you might ask if they need anything or want to go for a cup of coffee together. Talking about how hard this is to other parents on the floor or to the mental health professional you know can be helpful, too, at this difficult time.