How-To

Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

Navigating Grief and Loss: A Guide for Siblings of People with IDD

Author(s)

Shruti Tekwani is a licensed mental health therapist at Thrivecorp, Boston. She may be reached at shruti@thrivecorp.org.

To a sibling of a person with an intellectual or developmental disability (IDD), grief can be a common emotion that is navigated multiple times and through many layers during the relationship with their brother or sister. It may first happen when they realize that their sibling relationship will not be a typical one, when they realize that their role in their sibling’s life may not be how they first imagined. It then may go on to grieving the life they might have desired for their sibling. Sometimes it takes a while before the feeling can be identified, and that begins the process of disenfranchised grief.

Disenfranchised Grief

Disenfranchised grief (Doka, 1989) starts when the sibling of an individual with IDD realizes that the relationship they thought they were going to have is going to be very different than what they were expecting, and from the sibling relationships many of their peers seem to experience. Perhaps the first time they experience this grief is when they sacrifice a social event to help out with caring for their sibling, or maybe it was a public tantrum that brought unwanted attention to them and their family. Something as simple as going out to dinner with the family can be postponed or cancelled if the person with a disability has a change in routine. For example, a family planning a night out to celebrate a birthday may have their plans disrupted at the last minute if the person with a disability is uncomfortable with this change in their usual routine and doesn’t want to leave the house. Situations like these can bring about a constant feeling of loss when life is being changed regularly and it seems like nothing goes according to plan, therefore bringing about a feeling of not being in control. This slow realization that their family dynamic is different from what they expected or desire, and from what they see as typical, can lead to a grieving process.

Survivor’s Guilt

Another type of grief that can show up is the feeling of survivor’s guilt. A sibling without a disability can feel guilty for being “okay” and for having opportunities that the sibling with IDD does not have. This grief is not a one-time event that is mourned; it is something that can keep coming up with every major life event.

If the sibling with IDD passes away, it can come with a whole new myriad of emotions for the surviving sibling that can be unexpected, especially if the death was sudden. More often than not there are feelings of survivor’s guilt by the sibling who is left behind because they feel they could have done more or better while their sibling was alive. After the sibling’s death, for some, it will be a loss of purpose if they were the caregiver. For others, they may experience some relief because they no longer have the responsibility and can now live their lives on their own terms. For others, they may not know what it means to live their own life and may feel lost.

In addition to survivor’s guilt that may be related to death of a sibling, as mentioned above, death of parents or others who raised us can also bring on multiple layers of death-related grief. There is the typical grief that comes with losing the people who brought us into this world, and those who took care of us and are supposed to care for us unconditionally. When we add the layer of having a sibling with a disability, not only might the surviving siblings – both with and without disabilities – mourn the loss of a parent or other parental figure and what that loss means to their support network, the sibling of a brother or sister with IDD may also now take on an additional caregiver role. As they navigate their own feelings of loss through death, they may be filling the shoes of the person who has passed away in relation to their sibling with IDD. In addition to that, they may try to view the world from their sibling’s perspective, shifting their own feelings to the back burner to attend to their sibling’s feelings. When there are intellectual and developmental disabilities involved, it can be hard to even explain the absence of the parent. Added responsibility and the change of future plans are something that can come into play for a sibling of someone with IDD when a parent passes away. If this was never talked about or planned for ahead of time, the sibling of a person with IDD may be left with the overwhelming responsibility of making decisions that would normally be made by others, in addition to the sudden caregiver role. Future plans can be threatened if they need to make changes in living arrangements or at work in order to accommodate the new life of being a caregiver for their sibling.

An important factor to consider when thinking about disenfranchised grief and survivor’s guilt is that with death-related grief there is usually a ritual that goes along with the loss, such as a funeral. With the type of disenfranchised grief and survivor’s guilt that siblings of individuals with IDD experience, there is a mourning period but no label or ritual, per say. Changes and losses are often accepted while there is no formal way to acknowledge and validate the feelings of grief and loss.

Going through all of this can be tricky, but the following are some suggestions for navigating the complicated emotions of ongoing grief and loss that may be experienced by siblings of individuals with IDD:

  1. Allow yourself to acknowledge and identify feelings. Feeling like you are being heard, even to yourself, can be validating and helpful.
  2. Know yourself: Not everyone likes to be surrounded by people when they are going through a rough time. Siblings who have brothers or sisters with disabilities are not always good at advocating for themselves, and in this case, it is especially important to speak up for what you need.
  3. Give yourself permission to do something out of the ordinary. When we feel constricted or trapped, that’s never a good feeling. Siblings of individuals with IDD may be used to being people-pleasers, which sometimes means doing things they are not comfortable doing. If what you need is to do something out of the norm, allow yourself that freedom.
  4. Know what you need to be okay. If you need to have a solid plan for the future for your sibling or family in order to sleep better at night, develop one. Even if you don’t have buy-in from anyone else and it’s just you, it may help you feel better to have it in place.
  5. Get familiar with resources available to you. Depending on the state or country you live in, resources may differ, so it’s a good idea to know what is available to you. Some helpful websites are:
  6. Ask for help when you need it. All siblings need help at some point. Together, we are stronger!

Reference

  • Doka, K. J. (Ed.). (1989). Disenfranchised grief: Recognizing hidden sorrow. Lexington, MA: Lexington Books.