Trouble with Sleep
“Since treatment started, my daughter is afraid to go to sleep without me. We are both exhausted and cranky. I don’t think I can cope with all of this on two hours of sleep and if I don’t get some sleep soon, I am going to lose it!”
Our minds, bodies and spirits need rest. Sleep is an essential ingredient for the well being of you and your child!
If your child is hospitalized, chances are neither of you are getting a good night’s rest (we all know the beep of the IV at 3:00 am). This is particularly troublesome for children and parents that are already tired from the day-to-day effects of treatments and medications, specialists’, clinic and office visits, outpatient trips, and all the other demands. As any parent of a child with a serious illness can tell you, it makes it even harder to care for a sick child when you are exhausted.
Fatigue (being tired) is a real medical condition that won’t go away on its own. Unfortunately, with all of your attention and emotions focused on treating and coping with your child’s illness, it’s easy to overlook just how tired you really are . Given all that you are going through, you may be taking it for granted that you and your child should be completely exhausted. Many of us don’t even notice when it is getting worse. Here are some suggestions that may help you and your child get the rest you so need.
Helping your child cope when you are away
Your presence brings comfort and peace to your child but there will be times when you cannot be there. When your child is sick, it is heartbreaking to leave, but you need to make sure that you are getting the rest you need in order to better care for your child. There are many ways to help your child cope while you are away.
- Record comforting words, goodnight songs and stories in your voice for her to listen to while you are away.
- Leave an article of your clothing (with your scent on it) for your child to cuddle if she will be alone at night. (No matter the age, this is often a comfort.)
- Leave photos of yourself and other loved ones by the bed.
- Take something of hers along with you to keep her “with you.” Let her know what you are taking and that you will be thinking of her the whole time you are gone.
- Create a bedtime ritual that leaves her hopeful for the day to come and helps her focus on the good things from that day. Try to keep that bedtime ritual preserved when you cannot be there. Let caregivers and hospital staff know the routine and provide them with her favorite books, cuddle toys and blankets.
- Make sure she has her “comfort object” when you are away or even when you are at home and she is not feeling well. Even teenagers like to cuddle their blankie when they are sick.
- Gently massage her back, legs, arms and hands before you go. While you are massaging, play a soothing tape such as nature sounds, peaceful rhythms, humming or soft lullabies. Ask the caregiver to play the tape while you are gone. Your child will associate the sounds with your massage and the relaxing feelings it gave her.
- Give your child permission to contact you if she awakens fearful or unable to be relieved by anyone other than yourself. (Give this permission ONLY if you can be available to return to her.)
- When you are together, practice guided imagery to create a familiar or imaginary place she can go to when you are not with her. Guide her in relaxing and bringing herself to a restful place so that she can use the technique when you are away. There may be counselors available to assist you and your child with guided imagery and relaxation exercises.
Scheduling rest, sleep and enjoyment during treatment
You may want to keep track of how much good rest and uninterrupted sleep your child does get and focus on what works for her. Is she able to plan on and make use of down time and is there a quiet place so she can nap or take a break? Also, observe what exhausts her. Do any of her regular activities (school, play, etc.) make her extra tired?
Once you get a clear sense of when and where your child is able to rest easily, your care team may be able to plan ways to group tests, assessments and treatment schedules so that your child can get undisturbed rest. Be clear about your needs. Adjusting the schedule to accommodate rest time will let you plan for enjoyable activities between medical appointments. Use the time she feels best for something she enjoys. Try to make time for enjoying life, playing and regular activities with family and friends. Laughter heals and just plain fun goes a long way to improving all of our moods and helps us rest well and sleep better.
Try to keep your child’s sleep rhythm regulated between night and day. If they sleep all day, they will be up all night. Try to help them ease their sleep pattern back to close to normal and ask for the support of the hospital staff to assist you in that goal.
When something more is needed
Many physical conditions cause fatigue, especially in children. Certain conditions that cause blood changes in your child due to her illness may require her to get blood products and transfusions. Frequent monitoring of blood levels assists the health care team to know what might be causing increasing or unrelieved exhaustion and increasing fatigue. Be sure to ask your doctor if the fatigue is caused by the disease and/or treatment, or whether it is just plain lack of sleep.
If the situation gets prolonged and unrelieved by normal efforts, the doctor may decide something is needed to help your child relax enough to sleep. If you feel a prescription is needed, don’t be afraid to discuss it with her doctor.
Article contributed by Liz Sumner RN, BSN
Palliative Care Coordinator, The Elizabeth Hospice