{"id":683,"date":"2019-11-30T11:58:40","date_gmt":"2019-11-30T11:58:40","guid":{"rendered":"http:\/\/www.tuffrey-wijne.com\/?p=683"},"modified":"2019-11-30T11:58:40","modified_gmt":"2019-11-30T11:58:40","slug":"how-to-talk-to-people-with-learning-disabilities-about-death-and-why-you-should","status":"publish","type":"post","link":"http:\/\/www.tuffrey-wijne.com\/?p=683","title":{"rendered":"How to talk to people with learning disabilities about death (and why you should)"},"content":{"rendered":"

This blog post was first published by Marie Curie, see here<\/a>.<\/em><\/p>\n

Some of the challenges people with learning disabilities face when it comes to death and dying are hard to fix, but it seems to me that some solutions are outrageously obvious. Talking openly to people about death, and involving them in everything \u2013 including shared rituals of grieving \u2013 is one of them.<\/h4>\n
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My friend Pete, who was terrified of death<\/h2>\n

Let me share the story of a good friend of mine. I\u2019ll call him Pete. Pete had severe learning disabilities and he was terrified of death – perhaps because he watched his father die a painful death at home when he was a child. Or perhaps because when his mother died, Pete was on holiday. He wasn\u2019t told that his mother had died until well after the funeral. Pete came back from holiday and found himself having to move, completely unexpectedly, to a residential home full of strangers.<\/p>\n

Pete\u2019s mother died decades ago. I keep hoping that Pete\u2019s story is a history, but sometimes I still hear similar stories of exclusion.<\/p>\n

A conspiracy of silence<\/h2>\n

When I was a hospice nurse in the 1990s, many of my patients had adult sons or daughters with learning disabilities, yet they rarely visited. My suggestion that they should was often met with alarm. Like Pete, many of the relatives with learning disabilities had not been told that their parent was ill, and certainly not that they were expected to die.<\/p>\n

\u201cShe couldn\u2019t possibly understand!\u201d people would say. Or, \u201cI don\u2019t know how to tell her.\u201d Or, \u201cIt will only upset him. What\u2019s the point of doing that?\u201d<\/p>\n

Later, when I started doing research into all this, my co-researcher Gary Butler (who has learning disabilities himself) used to get particularly angry about this. \u201cOf course he is going to be upset!\u201d he\u2019d say. \u201cHis father is going to die! Why aren\u2019t we allowed to be upset?\u201d<\/p>\n

He\u2019d go on to explain, \u201cI know why. It\u2019s because people don\u2019t know how to cope when people with learning disabilities are upset.\u201d<\/p>\n

What should we be doing?<\/h2>\n

But talking openly about death and dying with people with learning disabilities is important. Most people cope best with difficult changes in their lives if they have some way of preparing for it, and if they are\u00a0helped to understand what is happening. This includes telling people that someone close to them is likely to die, because otherwise, the death will be experienced as an unexpected, sudden death \u2013 which is much harder to cope with. Knowing that a loved one is going to die is sad, but sadness is not, in itself, a good enough reason to withhold such knowledge.<\/p>\n

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Picture taken from Books Beyond Words: “Am I going to die?”<\/a><\/p><\/div>\n<\/div>\n<\/div>\n

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How to talk about death and dying with people with learning disabilities<\/h2>\n