Care Dimensions: Death of Developmentally Disabled Child Can Bring Complicated Emotions

Voices of Care

Death of Developmentally Disabled Child Can Bring Complicated Emotions

Posted on January 6, 2020 by By Erin Uzarski

The loss of a developmentally disabled child can bring a complex array of emotions due to being not only a parent, but also a long-term caregiver, advocate, case manager, and, sometimes, a legal representative, even as that child enters adulthood.

For these and other reasons, parents who have lost a developmentally disabled child often find it difficult to relate to other bereaved parents who cannot fully understand the loss and how it can change family dynamics.

Grieving what might have been

For some families, long before the young or adult child dies, parents grieve some aspects of their child’s future. Depending on the disability, parents may grieve the loss of hopes and dreams or what we often think of as key life milestones, such as graduations and marriages.  

After the child dies, well-meaning friends or colleagues can be lost for words or struggle to say the right thing.  They make remarks that are intended as comforting, but received as inappropriate. For example, in our grief support groups at Care Dimensions, some bereaved parents of developmentally disabled children have told me their friends say things like, “At least you get your life back now.” Or, “At least you don’t need to go to the facility every day.”

While these may be meant as a way to find the silver lining, they are often hurtful.  Often, there is a sense of relief at being free of caregiver routines and having more time for self-care. However, these caregiver routines were part of the parents’ lives in the same way that having a job would be, or raising children in general. So parents may feel a mix of grief, guilt and relief and feel conflicted between these emotions.      

When we are processing complicated emotions about losing someone close to us, it’s important to feel heard and understood.

Grief has no rules

There is no rule book to grief, and it is okay to be both happy for a new life while missing and loving the person you have lost.  These two do not have to be mutually exclusive, and there are ways to help you cope better.

Start by acknowledging and respecting the fact that each family member’s grieving process may be different. Some may want to cry and talk about their loss, while others process their grief alone. As long as everyone is safe and you are not causing harm to yourself or others, there is no right or wrong way to grieve.

It helps to access a support system outside the family unit because it can be difficult to lean on someone for all your needs when that person is simultaneously grieving the same person.  Reach out to friends with whom you can speak openly and without judgement. 

Finally, consider joining a grief support group for parents who have lost a developmentally disabled child and where you will find a safe place to be heard and connect with others who are processing a similar loss.

Visit the Care Dimensions website to learn about or register for the eight-week support group specifically for parents who have lost a developmentally disabled child. Starting on January 14, this group offers a place where you can speak freely and safely with peers in a group setting facilitated by a licensed bereavement counselor.

For more information or to register, email grief@caredimensions.org or call 855-774-5100.

Erin Uzarski, MS, is a bereavement counselor at Care Dimensions.      

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Since 1978, Care Dimensions has provided comprehensive and compassionate care for individuals and families dealing with life-threatening illnesses. As the non-profit leader in advanced illness care, we offer services in more than 95 communities in Eastern Massachusetts.