Helping PWIDs Handle Grief and Loss
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How do you explain death to Persons with Intellectual Disabilities (PWIDs)? In the 12 years and counting that Tiffany Wang has been with MINDS, she has found that people often just don’t.
“Family members prefer to hide the news of death, and many times those with intellectual disability (ID) are not given the opportunity to participate in the rituals and say their final goodbyes,” the 33-year-old Acting Head of Psychology reflects. In some cases, this happens because caregivers want to protect PWIDs from the upsetting news. Other times, it is because they don’t think the PWID will be able to understand the concept of death and grief.
Either way, Tiffany believes this should not be the case. “Dealing with loss and grief is all part of life. It is imperative that supports are put in place to ensure that individuals with intellectual disability can cope appropriately,” she emphasises.
Choose to be honest about death
To her, support starts from being honest about the situation. “If you do not address the issue, the PWID will not understand why a close family member or friend has suddenly disappeared,” she matter-of-factly states.
Tiffany acknowledges that when doing so, there may be a need simplify the information for the person to understand. However, she advises against using euphemisms for death, such as telling them that their loved one has gone to sleep. “This may end up scaring them, and they become afraid to sleep as well,” she explains.
The same can be said for excuses about a loved one “going away for a long time”. As the reason for the person “going away” is unclear, the PWID may wonder if others will do the same – resulting in trust issues in the future.
Acknowledge there are different ways to grieve
Equally important is to help PWIDs cope with the loss. “Similar to any of us, those with ID will have an emotional response when their loved one dies, especially if the two share a close bond,” Tiffany explains.
She recommends giving them a choice if they wish to attend the funeral, as being able to say their last goodbyes can help with closure and acceptance.
That said, she cautions that “there is no right or wrong way to grieve”. Not all PWIDs will be able to express themselves with words, and some may become increasingly irritable, anxious, or disinterested in daily activities instead. As such, it is worthwhile for caregivers to be on the lookout for behavioural cues to know where and when to intervene.
Dealing with loss and grief is all part of life. It is imperative that supports are put in place to ensure that individuals with intellectual disability can cope appropriately.
Keep a Daily Routine Going
For example, she recalls how one of her clients, 45-year-old Thean Ann, was often found in tears after the loss of his father in 2020. Noting his despair, the nurses at MINDSville@Napiri kept a close watch over his eating and sleeping habits, to ensure that his health would not deteriorate.
The team also continued to engage him in daily group activities and found simple chores for him to help with during his free time. This helped stave away loneliness and prevented Thean Ann from dwelling in his sadness.
Significantly, they did not avoid the topic of his father, but encouraged him to talk about his feelings. They patiently sat with him when he cried, listened attentively when he wanted to share his favourite memories, and referred him to Tiffany for additional emotional support.
Learn to manage challenging emotions
Tiffany believes that being able to speak about their deceased loved ones is an important part of the grieving process. During her sessions with Thean Ann, she continued the conversation about his father, and worked to help him process his overwhelming emotions. For example, to help him feel more in control of his situation, she helped him identify and name the feelings he experienced. She also taught him coping strategies, like using deep breathing to calm himself down when he feels overwhelmed.
Together, they even brainstormed things Thean Ann could do to help himself feel better. He eventually chose to have a photograph of him and his father that he could look at for comfort.
It took months of teamwork, but with the help of the MINDSville@Napiri team, Thean Ann eventually found healing. The road to overcoming grief was not easy, but Tiffany’s hope is that with the right support, others like him will be able to emerge stronger from the storms they face in life.
Grief is a basic human emotion, and like any of us, PWIDs will experience and express grief in unique ways. Rather than shield them from the harsh realities of life, we encourage friends and families of PWIDs to support them so they can learn to cope and manage the emotions they experience.
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