By: Janalee Heinemann, MSW Director of Research & Medical Affairs & PWS Advisory Board
Prader-Willi Syndrome Association (USA)

As our children are living longer, we need to address new issues.  At the national office, due to our family support work and bereavement program, we get calls on a variety of deaths – often where the issue is supporting the child/adult with Prader-Willi syndrome who is dealing with a loss of a parent, grandparent, sibling, or roommate.  Also, adults with PWS are dealing with other types of loss such as losing a job or beloved staff at their supportive living placement, feeling the stress of a parent losing a job, losing a long-time friend of the family, the death of a beloved pet, etc.

We discussed the issues at our PWS Advisory Board (which consists of adults who have PWS) meeting and I have been doing bereavement groups for over 20 years. The following are suggestions that may help in understanding the grief process of a person with the syndrome and how to provide support.

POSSIBLE GRIEF REACTIONS FROM A CHILD OR ADULT WITH PWS

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• A lot of questions that may be hard to answer!

• Anger – lashing out

• Refusal to talk about it – isolation

• May not openly show grief with tears

• Self abuse accentuating

• Fear of losing others

• Guilt – logical and illogical

• Fear of own death -- health phobias

• A surprising external lack of response/emotion

• Setbacks in behavior after a home visit

• Occasional setbacks for unknown reasons

• Fear of financial insecurity or loss of home stability

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REMEMBER – PEOPLE WITH PWS OFTEN

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• Lead more protected lives – have less exposure to dealing with “real world” issues.

• Think more concretely rather than abstractly thus if younger, may have a harder time with the

• dimensions of death – E.g. that it is irreversible and that everyone dies.

• See the world from an egocentric viewpoint – how it affects them.  They also may blame themselves for the death or family stress.

• Have a hard time dealing with sudden change.

• Sometimes have a limited ability to communicate feelings.

• Often have a lot of loss and grief issues to deal with – loss of staff or roommates through moves;

• dealing with rejection from others; grieving over all of the restrictions on their life; not being

• able to have children, drive, marry, etc – yet bright enough to know what they are missing.

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HOW TO PROVIDE SUPPORT

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• Do acknowledge the death and ongoing loss issues. Do ask questions and listen to the answer.

• Find a person he/she feels comfortable talking to and nurture their time together.

• Do look at developmental not chronological age.  For example, a child before the age of eight may think a person is only dead for a period of time and will come back.

• Do understand that acting out may be due to grief issues.

• Do acknowledge special occasions and help the person with PWS find a way to keep the memory of their loved one alive.  (I.e. view pictures or videos together, light a special candle on the deceased person’s birthday, buy an angel for the tree in memory of their loved one.)

• Do expect the person with PWS to become somewhat phobic and have concerns that may seem illogical to you but are very real to him/her.

• Do use simple and direct language about death.

• Do all you can to help the family with getting the person with PWS to the funeral.  If in residential care, staff support for that person at the funeral would be optimum.

• Do be alert to the potential of depression and psychosis.

• A person’s religious belief can be very helpful, but be careful if you are using religion as a support, to keep it within the person and their family’s own belief system. 

• Ask the person with PWS what they think happens after death.

Don’t get caught up in “stages of grief”.  They are only windows to look into the human experience rather than an exact prescription of how a person should grieve. Grief is a roller coaster rather than a ladder.  There is no “right” or “wrong’ way to grieve.