In the course I recently completed (supporting individuals living with complex care needs), a point was brought up…most of the studies and models (and the resulting stages of grief and mourning) were done with people nearing the end of their life.

What about those who die young, or unexpectedly or have pre-existing mental illness or difficulties in comprehension and reasoning?

So I did a little digging.

Yes, most of the knowledge our society has acquired has been generalized to be a way of looking at losses and endings for everyone.

Today I’m shouting from the rooftop, “We cannot assume that we know how anyone will feel in any given situation—there are just too many variables.”

I know individuals who are surprised at the intensity of the grief expressed by someone living with a developmental disability because they did not think the relationship was a close one.

Whether the relationship between the person with developmental disabilities and the loved one was an obviously close one or a “hidden connection” the death can increase fear that others in the bereaved person’s life will die soon or leave. This can help cause the person to feel that the world is unpredictable, out of control, and unsafe.

So what are we, as caregivers, supposed to do? Consider the following guidelines:

Check with the individual being supported. And then check again. In other words, give the person time. Offer them a chance to talk about the loss on several occasions over time…and don’t force the subject.

Be aware of your own feelings.

And allow the feelings of another person to emerge safely.

Don’t judge what bubbles up. Listen non-judgmentally.

Provide reassurance that s/he is not alone and there are other people to help.

Listen.

Give a hug.

Hold a hand.

And minimize change…in routines…in accommodations…

Displays of grief are often misunderstood…and discouraged…especially when they are intense and disruptive…as is what we often see with someone living with a developmental disability.

If you are providing respite for someone living with a developmental disability, here are some questions you can ask caregivers supporting that person:

How did the person respond when it was discussed with him/her about the person who died?

What has the person done or said that makes you think s/he is coping well or not coping well?

Has s/he acted in ways that are unusual for him/her?

Have sleeping patterns changed?

Have eating habits changed?

Has work productivity changed?

Is the person withdrawing from social activities?

Has there been an increase in complaints of pain or illness?

Has their personality changed?

For those living with a developmental disability, grieving may require much more time, effort, and support than for most people.

What experiences have you had?

Melanie Hack
Author of Who Killed My Sister, My Friend
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