Some survivors, primarily those who had brain tumors, can suffer devastating late effects that leave them unable to work or live independently. Families dealing with this situation face a difficult future, one that is not often discussed. In some cases, nothing can be done to improve the survivors’ functioning, and families may feel isolated and desperate. They must cope with complex medical, social, and psychological issues because so many body systems can be affected by tumor location, extent of surgery, and cancer treatment to the brain. They must seek out professionals to meet all of the survivors’ needs and are often frustrated by the many gaps in services. This can be a relentless and exhausting job.

In some communities, parents can find resources that address their needs, while in other locations they are left on their own. One method of support is finding respite care, which allows parents or guardians to have a break from caring for their child. This can be arranged through local social services, regional programs for the developmentally disabled, or privately. Some families network and take turns taking small groups of survivors on outings.

One way for caregivers to get respite time is to try to link the disabled survivor with a part-time job or a volunteer position that matches an area of interest. Some examples are walking dogs in the neighborhood, working with animals at farms or shops, or helping at a daycare center. These jobs allow the survivor to earn money and improve self-esteem, as well as provide a connection to the community and opportunity for socialization for those who feel isolated.

Parents can contact local head-injury groups for possible organized outings/social events or other local resource organizations that might help. Some comprehensive follow-up clinics provide monthly activities for adult disabled survivors. In some areas, social groups have been established to provide a social community for disabled survivors.

Parents may also need help to ensure that a plan is in place to provide care for their adult child when they are no longer able to do so (such as a limited conservatorship). Making arrangements prior to illness or old age with the help of an attorney who specializes in estates and trusts can ease parents’ minds about this most crucial transition.