Helping Persons with Developmental Disabilities Deal with Death

The Rev. Donna Whitmore
Moderator, Presbyterians for Disability Concerns (PDC)

Kathy’s Story

Kathy was in her mid thirties when I met her for the first time. She has a developmental disability. Her mother said that before the death of Kathy’s father, she had been charming, affectionate, and very verbal. When I met her, however, she looked haggard; her mother said that she had lost weight and that she had been hitting and biting herself.

Kathy’s mother did not tell her right away when her father died. Nor had Kathy been given the opportunity to attend the memorial service. Her mother was trying to protect her.

Kathy missed her father as they had had a very close relationship. When he disappeared, Kathy felt abandoned. In her confusion she asked, “Where is he?” and “What did I do wrong?” It was not until she was finally told the truth and could begin to deal with reality that she gradually became her old self.

Kathy’s mother’s intentions were good. Kathy, however, needed to deal with her father’s death. As long as she did not know the truth, she was living with a false reality. Being overprotected was actually harmful to her. Because her mother was not honest with Kathy, she had to deal not only with her father’s death, but with her mother’s falsehood.

I believe that the idea that people with intellectual disabilities can’t understand death is a myth. They are often much more aware than we realize. Caregivers may also fear that talking about a death will create too much pain. I believe that we need to treat people with developmental disabilities with as much honesty and respect as we would offer others. Like all of us, they need to talk and to tell stories about the one they have lost. This is a necessary part of the healing process.

Alice’s Story

All of us handle grief better if we are prepared. Alice’s story is a good example of what lack of preparation can mean for a person with a developmental disability.

I met Alice five months after the death of her beloved grandfather. She was having a very hard time. She was asking, “Why?” She wanted to know, “Why did God do this?” and “Why didn’t my dad tell me he was going to die?”

Alice’s grandfather had been moved into a nursing home several months before he died. Alice was not told that he was dying. Instead, her parents told her, “Your grandpa can’t see you now.” After the death, Alice was told and she was able to attend the memorial service.

Alice never got over the fact that her father had lied to her. She asked over and over, “Why did my dad lie to me?” “My dad didn’t trust me,” she said.

Alice still sees her father but she is very angry because of his lies. Her grieving is two-fold. She is mourning not only her grandfather’s death but also the feeling of betrayal by her father.

Like everyone else, people with developmental disabilities need to know what is happening. They need to be at the bedside; they need to say “good-bye.” They need to be able to talk about the person they are losing. They deserve and need to be with the family. They know when family members are putting up a false front. A bit of advice for all families, including those with a family member who has an intellectual disability would be, “Live your grief together.”

People with developmental disabilities can also give incredible comfort and companionship for other family members as they grieve together. Because they are in touch with their emotions, they can help the whole family share feelings. They can be “huggers” when others want to “shut down.”

Suggestions for Caregivers

The caregiver’s relationship with the person will help her or him know how to talk about death. Talking is healing but we need to remember that people with developmental disabilities may be very blunt. They do not hide their grief inside themselves. Also, their feelings often come out in their behavior rather than in words. They may experience loss of sleep, withdrawal, or regression in personal habits. They may become uncooperative. If the person reacts with behavior, the caregiver will need to respond with understanding, not anger. It is time to verbalize feelings. “You are angry because your grandfather died.” Or, “It is okay to be angry.” Link the emotion with the event.

If we listen attentively, the person will usually ask about what he or she wants to know. It is important, in answering questions, to use direct language: “died” and not “passed away” or “went to sleep.” It is also helpful to name the cause of death. For example, say “cancer” instead of using a euphemism.

Be patient. It may take a while for the person to realize that the dead person is not coming back. Another common response is to wonder and worry about who will be the next to die. It can be helpful to say, “Everyone dies sometime but we don’t know when.”

Assure the person that there will be continued support. For example, if she asks, “Who will take me to the zoo?,” you might say something like, “We know that going to the zoo is important to you. We’ll make sure you get to go.”

Help the person to express feelings. Provide opportunities to draw, model with clay, sing, or listen to music. Make memory books or memory boxes. Write down the special activities and times the person shared with the loved one. Visit favorite places. Make sure that family rituals are maintained. If there is a favorite activity, continue the routine. Rituals help to bring structure and “normalcy” at an unsettling time. Talk about times when the person who died will be especially missed. Holidays, for example, can be particularly difficult.

The Memorial Service

Like all of us, people with developmental disabilities find it helpful to attend the memorial service. Between the time of the death and the service, it can be helpful to go to the funeral home and to answer questions and talk about what will happen at the service and at the burial. If there is an open casket, ask the person if she wants to go up to the casket. This gives an opportunity to say, “I love you.” At the service there may be some embarrassing moments because people with developmental disabilities can be very blunt. Relax and let the person be who she is!

Preparing for Times of Death

It is especially important to prepare people with developmental disabilities for the deaths they must eventually face. They have a hard time because they don’t have the same experiences others have. Furthermore, a death often brings big life changes for them. If they are not dealing with reality, these life changes can be even more difficult.

Take the opportunity to attend a memorial service for someone with whom the person does not have a close personal relationship. Watch a movie together or read a book that is sensitively written.

I recently heard of a woman with an intellectual disability who was elected to the Board of Deacons at her Presbyterian church. One of her responsibilities as a deacon was to assist in serving receptions after memorial services. For each reception, she folded napkins and helped to set tables. Not only was she included as part of the community but she learned what happens at a memorial service.

Bob’s Story

The faith of a person with a developmental disability can be important in helping him to deal with the reality of death. I did not appreciate the depth of Bob’s faith until after the memorial service for his brother. After the graveside service, Bob stayed at the grave long after all the other mourners had left. It was only then that I understood how deep and profound his faith really was. He needed to see his brother buried and he needed to help cover the urn with dirt. He needed to talk about his brother being with God. Without that graveside conversation I would never have understood the depth of his spirituality. His brother’s death was incredibly painful for Bob but he had to know and express that reality if there was to be healing.

Conclusion

Kathy, Alice, Bob — what did they need for their healing? They needed to deal with reality. They needed the caring presence of those who were closest to them. They needed to know the truth of what was happening. They needed to talk, to tell stories, to be listened to, and to memorialize. They needed to grieve with their families. They needed to bring their own gifts of comfort and companionship to their families. They needed to feel and express their faith and the depth of their spirituality. Thanks be to God for gifts given and received!