After reading National Family Forum member Martin Boniface’s latest blog Where there’s a Will… I was keen to share my experiences on the topic.
I can’t remember a time when my parents didn’t worry about my brother and ‘what will happen to Kenny when we’re gone?’. This question kept them awake at night and was a hushed topic of conversation with other adults in a similar position.
Not only did they worry about Kenny’s future, but they worried about him being a burden on me and his other sisters. And this worrying about the future really prevented them from enjoying the present.
I don’t know any parents of people with learning disabilities and autism who don’t share this fear. I know a lot about the practicalities and yet I still haven’t finalised the will and financial deputyship for my daughter who has autism.
However, on an emotional level I feel a bit more confident as I know from experience that staying in touch with my brother isn’t a burden. I’m also lucky to have a big family in that respect.
Every day at work I see family members who continue to love, visit and support their relatives, and support staff who are especially dedicated to the people we support who have no family and do their best to make sure people don’t miss out on special occasions.
A great example of this is the touching funeral service organised by our London team when a beloved Supported Living user passed away.
Talking about our own or our children’s death isn’t easy. It is a big taboo in Britain – I want to change that within Dimensions.
To start with, in the new year I will run a series of Death Cafes where small groups of relatives and staff can have open and respectful conversations with a view to helping us make the most of our lives.
The cafes will be followed up by practical information on wills and trusts and the different options of finance and welfare management offered by the Court of Protection.
You will have a chance to say what kind of funeral you would like for your relative and how you would like them to be supported when you die.
Alongside this we will be producing information to help staff talk to relatives about end of life issues so that we can support people well when a loved one dies and eventually with their own death.
One thing we can be sure of is that ignoring death won’t stop it! Please join us in talking about this sensitive subject. Tears are expected and welcomed. Don’t let fear of the future stop you enjoying the present.