Siblings often make excellent caregivers for their sibling with Prader-Willi syndrome (PWS) because they grow up around PWS, understand the realities of the syndrome, and are trained throughout their lives to take care of their sibling. Therefore, siblings seem to be a parent’s perfect choice to tend their family member with PWS and often become a secondary or even primary caregiver. However, parents often do not realize the burden this responsibility is for children who are trying to navigate school, friends, and growing up.
As one mother was trying to find someone to tend her daughter with PWS, she considered each of her extended family members and friends but concluded that nobody could handle the responsibility. In addition, she did not want to burden them with the arduous task. She then became guilt-ridden when she considered how often she expected her young daughters to tend their sister with PWS. In this realization, she glimpsed the burden siblings face. She knew adults could not handle her daughter with PWS but expected it from her young children.
The older the family member with PWS is, the harder tending usually is for siblings. One explanation could be that the member with PWS is larger and tends to have more intense food-seeking behavior, and behavioral problems. In addition, tending can be more difficult when the family member with PWS is older than the sibling tending. One 12-year-old sibling said, “I can’t do stuff because I have to watch my 20-year-old brother,” (Murphy, Thornton & Thornton, 2019). It can be difficult for younger siblings to assert authority over their older sibling with PWS when they can be overpowered by their size and strength. This can leave the younger sibling feeling overwhelmed, unsafe, and powerless.
Many siblings report enjoying watching their sibling with PWS. As a sibling said, “When I tend my sibling, I feel like I am helping my parents. It feels good in a way” (Murphy, Thornton & Thornton, 2019). However, most siblings do not enjoy this responsibility with many viewing it as a burden and getting in the way of their other responsibilities and priorities.
Tips for Improving Sibling Caregiving
• Make sure the sibling knows they are supposed to tend. Some siblings reported waking up with their parents away with the expectation that the sibling will tend (Murphy, Thornton & Thornton, 2019). This causes unnecessary panic and another way the siblings have little control over their environment and life. Maybe make a physical schedule for when your children are supposed to tend.
• Ask your children to tend, do not assign them. Also, allow them to say no sometimes. This will show your children that you respect and value them and give them more control over their environment.
• Talk to your children without PWS often about their experience caregiving and how they feel about it. Make a formal plan with them about how often they tend and what to do if something goes wrong to make their experience better and give them more control. Review the plan often and make changes based on your children’s feedback.
• Debrief after any difficulties siblings have tending (refer to previous article “Tips for Improving the Well-being of Siblings of Individuals with Prader-Willi Syndrome: Debriefing” found at https://www.pwsausa.org/tips-for-improving-the-well-being-of-siblings-of-individuals-with-prader-willi-syndrome-debriefing/).
• Consider having siblings tend their family member with PWS less often. Make sure they have time to relax and unwind away from their sibling with PWS. As a sibling said, “We are dealing with a lot at home with them, so let us have more time away from home, more time with friends. Have less expectations because of the stress of home life” (Murphy, Thornton & Thornton). Consider taking the child with PWS out for an adventure at set times so your other children can feel comfortable bringing friends over to your house.
• Consider your children’s ages. If your children are young, perhaps younger than 12, consider not having them tend, having them tend only for short periods of time, or having them tend with older siblings. Siblings reported tending their family member with PWS by themselves as young as 8-years-old, which can be an enormous burden for someone who is still lacking key developmental abilities (Murphy, Thornton & Thornton, 2019). Many experts consider age 8 to be too young to stay home by themselves let alone tend an individual with complex needs and erratic behavior (Child Welfare Information Gateway, 2018). Before letting your children tend their family member with PWS make sure they are comfortable being alone with the member with PWS and are mature enough to handle and diffuse difficult situations.
Also, if your child with PWS is older than the sibling, be mindful that this can make it harder on the sibling. Take steps to increase the comfort of your child tending such as having them tend less often, for shorter periods of time and continually making sure the child tending feels safe being alone with your child with PWS.
• Try to find others that can watch your child with PWS. Parents need time off and do not have to reduce this time to give your children without PWS a break from tending. Work to obtain available resources for respite care.
Helpful links on funding and respite information:
Murphy, L., Thornton, J., Thornton, E. (2019). Tips for Supporting Parents. Prader-Willi Syndrome Association (USA). Retrieved from: https://ww.pwsausa.org/2019convention handouts/
Leaving Your Child Home Alone. (2018). Child Welfare Information Gateway. Retrieved July 25,2020 from https://www.childwelfare.gov/pubPDFs/homealone.pdf
Contributed by Jane Thornton and Emma Thornton