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Caring for an aging sibling with disabilities entails teamwork

What happens when aging parents can no longer care for their loved one with special needs? As parents age, siblings tend to assume this responsibility. To help ease the stress of this transition, it is important for parents and caregivers to work together. The following advice will help families as they navigate the transition to a group home or to a specific caregiver.


Do

Do build a relationship with caregivers

Whether your loved one resides in a group home or with an individual, get to know these caregivers and include them in celebrations, especially birthdays of your sibling with a disability. This will help caregivers gain a better understanding of your sibling and his/her family, which results in better care for your loved one.

Do schedule visits for siblings to come to your home

Whether you live close to your sibling with a disability or in another state, have your brother or sister visit your home periodically. This will benefit the caregiver by giving him or her a break from this responsibility. And if you have children, they will benefit from getting to know, understand and love those who are different.

Do celebrate special occasions with your sibling

Include your sibling in every celebration or family event. Even after moving away from home, your loved one is still an integral part of the family and needs constant contact and connection.

Do involve as many family members as possible in the caregiving

Each sibling or relative, such as aunts and cousins, can contribute in some way to helping with their loved one with special needs. Even if the sibling does not live close, helping to research information, writing letters and cards to their brother or sister, making phone calls to help with medical situations and other necessary tasks can be of help. Everyone benefits when responsibilities are shared.

Do gain knowledge about your sibling’s disability

It is important to understand your sibling’s disability. Knowledge is power. Join local and national organizations, especially the Sibling Leadership Network. You have a wealth of information available at your fingertips, so use it. Good decisions can be made if you educate yourself about your sibling and his or her needs.


Don't

Do not work against caregivers

Working together with caregivers will help address issues that might come up regarding the care of a loved one with special needs. The reality is that most caregivers want to do what is best for your loved one, so be kind. You will accomplish more with compassion and kindness.

Do not announce your visits

Regardless of where your loved one lives--whether it is in a group home or in single family home--visit at different times of the day, as well as on different days of the week. This will offer a more realistic view of the conditions in which your loved one lives. Be sure to check the daily schedule, as many group homes have activities off the premises.

Do not wait for a crisis to discuss the future planning of your sibling

The importance of discussing where your sibling should live after your parent can no longer care for him or her cannot be overestimated. Do not wait for a crisis to have this discussion. Planning ahead will reduce stress and decrease the likelihood of making decisions with heightened emotions.

Do not forget to check medications prescribed to your sibling

Sometimes, your sibling with special needs will see a number of doctors. Each doctor may be prescribing numerous medications, resulting in your sibling being overmedicated. State-run group homes have a list of medications that you should be able to view at any time.

Do not overlook the laws regarding individuals with disabilities

It is vital to be aware of your sibling’s rights, so that you can advocate for him or her. Every state is different, so become knowledgeable about your state’s laws regarding persons with disabilities. Find out what is available for those with disabilities in your state. In addition, each individual with a disability is assigned a caseworker, so meet your sibling’s caseworker and stay informed.


Summary
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As your loved one with disabilities ages, the challenges can be daunting. By planning ahead and working with family members and professionals, you will find that you are not alone, and the journey can be a fulfilling experience. Remember that even as your loved one is placed in a group home or a single family residence, your responsibilities do not end. Your loved one still needs you and the connection to the family in which he or she was raised. That family tie should never end.


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Photo Credits: Poker, Coffee and Memories by Fairfax County via Flickr; Check Man, Cross Man and Jump Man © ioannis kounadeas - Fotolia.com

Carolyn S. BakerEdD

Carolyn S. Baker has been an educator for more than 30 years. Upon her completion of her undergraduate degree from Longwood University in Virginia, she taught in Indiana, Florida,Tennessee, and Texas. She attained a master’s degree from Rollin...

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