Commentary On When My Dad Died: A Relative's Perspective
Commentary on Richard West's article, "When My Dad Died: A Relative's Perspective"
Sheila Hollins (UK)
Richard's experience was one that is still, alas, shared by many. It should never be allowed to happen. When he told me about what had happened, I gave him a copy of the Books Beyond Words title, When Somebody Dies. He wished someone had given it to him at the time of his father's death. People with intellectual disabilities have a right to participate fully in the grief and mourning process. Bereavement support and counselling should be made available routinely and not just when a maladaptive reaction has been recognised as grief. Both individual and group work with bereaved individuals may be helpful, particular if nonverbal approaches, such as the use of counselling picture books, are available.
Hospital staff often don't know about easier-to-understand sources of information. It may be down to family members and direct support staff to be better informed and able to advocate for the person so that their emotional and information needs are understood and met. The best tools to use directly with people with intellectual disabilities are three picture books published in Books Beyond Words: When Somebody Dies (2003) as mentioned above, When Dad Died and When Mum Died (2004), which are now available in a third edition that includes new text and guidelines (see www.rcpsych.ac.uk/publications/bbw).
For background information, counsellors are recommended to read:
Am I Allowed to Cry? A Study of Bereavement amongst People who have Learning Difficulties (1991) by Maureen Oswin. £12.99. Souvenir Press, London,
Loss and Learning Disabilities (2003) by Noelle Blackman. £16.99. Worth Publishing, London.