Caregiver and Sibling Needs
A child's brain tumor diagnosis can be traumatic for every member of the family. It's important to understand how the cancer journey can affect caregivers and siblings.
When a child is diagnosed with brain cancer, life changes for the entire family: patients, parents and caregivers, and siblings. While families as a whole share the cancer journey, they also experience it in separate and unique ways. There will be feelings shared by every family member and feelings that aren’t.
Kind and honest communication with each other is very important. And caregivers should be patient with the challenges and feelings they and others are experiencing.
Caregivers’ needs
Caregivers of pediatric brain tumor patients have to manage and overcome many obstacles during their child’s illness. They have to support their children, spouses or partners, the rest of their family, and hopefully themselves. Even after a child’s brain tumor treatment has ended, many caregivers find this stress makes it hard to deal with their and loved ones’ feelings and behaviors.
Strain in a Marriage
Unfortunately, marriages can often be affected by a pediatric brain tumor diagnosis. The stress and strain of dealing with intense treatment, endless doctors’ appointments, hospital stays, medication, living a life that is suddenly unpredictable, and the general care of a brain tumor patient can all take a toll on a marriage or partnership.
For caregivers in this situation, the most important thing is to communicate honestly and kindly with their spouse or partner. Talking about feelings you both have, as well as talking about your own unique, personal feelings can be helpful.
Paying attention to how each person handles a crisis in such a personal way may also help in better understanding differences and in dealing with strain. Parents or partners may not be experiencing the same thing and may be in very different places, which may cause distance or tension.
Providing each partner with space and time to deal with individual feelings as well as marital feelings and issues can help bring those feelings to the surface so they can be talked about. Couples, individual or family counseling can also help.
Stress in Relationships with Extended Family Members
The brain tumor experience is a very personal one and it can sometimes cause stress in relationships with extended family.
A child’s cancer is often handled mostly by their immediate family, and that support circle can tighten and shrink down to include only the most immediate and close family members.
Extended family may not be part of this circle and may not take part in the care or be aware of what is happening. Without anyone meaning for it to happen, this may leave extended family members feeling misunderstood, upset, worried, or rejected.
After treatment ends, these relationships may remain strained and may need some repair. Picking one family member to help reconnect with extended family may help. Social media and online blogging can also give parents a way to update everyone and announce when the survivor and immediate family are ready to start getting together with extended family again.
This may take some time and effort, but the payoff may be great if the relationships with extended family members can be renewed.
Siblings’ needs
When a child is told their sister or brother has a brain tumor, they will have their own emotions and questions about their sibling’s diagnosis. The feelings they experience can be difficult and change over time. Siblings need to know they’re not alone and their fears and feelings are normal.
Anger
Siblings of a patient or survivor may feel anger at the survivor who had the brain tumor. They may also feel angry at their family or at the tumor itself. They may feel resentment that their parents or whole family had to adjust their lives for the survivor.
Caregivers may need to deal with these feelings of anger or resentment in the family. Sometimes, anger at the brain tumor can get aimed at family members or others. It’s important for parents or caregivers to help siblings sort through these feelings.
Noticing that these feelings exist, talking about them like they matter, and talking about the reasons for the feelings can help siblings feel supported.
Other things that can help are open communication and helping siblings find places they can express their anger, such as with a therapist, in a journal, or in a support group or program.
Frustration
Frustration is another emotion siblings may feel. Parents and other caregivers may have to deal with siblings who are frustrated at how their lives have changed because of the brain tumor or are frustrated at not having as much time with their parents and families as they want or need.
Frustration may last for a long time and may spill over into other relationships. Siblings may also show frustration at the patient or survivor directly.
Parents and caregivers dealing with a child’s frustration may need to bring the situation out into the open and talk about it with the sibling. Treating these feelings like they’re real and matter and providing places for them to be talked about can help transform these emotions to healthier, more positive ones.
Loneliness
Parents and caregivers may need to give support to siblings who feel lonely.
Isolation and loneliness are common feelings among siblings of survivors. Caregivers have to spend most of their time caring for their sick child and, in spite of their best efforts and without meaning to, they can neglect a sibling’s need for their time, attention or emotional support.
A sibling may feel lonely because their family has not been present all the time, or the sibling may feel lonely even if they have been surrounded by their family and the patient.
Caregivers can help by setting aside special time with siblings that includes only the sibling and caregiver and making an effort to include siblings in family outings, events or decisions.
Finding sibling support activities or groups for siblings of brain tumor or cancer patients can also help.
Jealousy
Jealousy is a common feeling among siblings.
After a child’s brain tumor diagnosis, parents and caregivers often face the hard job of dealing with jealousy in their children. No matter how hard they try to balance their attention, caregivers sometimes feel that they fail.
Siblings can get the wrong idea that their parents care more about the sick child. They may also think that they’re never going to get their parents’ full attention back. This can result in feelings of jealousy that weigh heavily on families.
Parents can help siblings by repeatedly assuring them that they are loved and valued and very much part of the family. Parents can also tell siblings that they didn’t choose to spend time away from the siblings so they could spend extra time caring for the sick child. They did it because they had to.
Caregivers may have to pay attention to feelings of jealousy long after treatment ends because those feelings don’t necessarily go away when a child is done with treatment.
Look for ways to include siblings in family activities and in one-on-one times with parents. Honest talks between caregivers and siblings can help give siblings a time and place to express themselves and remind them of their special and valuable place in the family.
Feelings of Loss
Siblings can experience feelings of loss from several different places: the possible loss of their brother or sister to the brain tumor, the loss of their parent or caregiver’s time and presence while they’re taking care of the patient, the loss of normal life at home, or the loss of friends, school and home if the family has to move away from home for medical care.
These feelings can be very real and overwhelming, and noticing and talking about the losses the sibling is feeling is important.
Parents or caregivers should talk about these feelings directly and as soon as they notice them, not just after they’ve become a problem. It helps to treat a sibling’s feelings like they matter. It also helps to make the sibling feel normal if the parent admits they have these feelings too.
Parents can also give siblings information about possible losses that may be coming to make sure that siblings have accurate, realistic information to base their feelings on.
