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Supporting Sharon and her family to make future plans

2 November 2022
Blog post

MacIntyre’s Dying to Talk Project Lead, Rachel Furniss, shares her experiences of working with Sharon and her family to think about and plan for the future.


This year I’ve been privileged to have the opportunity to work with Sharon, a lady we support in Chesterfield, and her family to think about their plans for the future.

I’ve known Sharon for many years due to my previous role as a Learning Support Worker at one of MacIntyre’s Lifelong Learning Centres. Sharon and I first worked together on the Dying to Talk Project in January 2022, and initially Sharon found the subject of death and dying very difficult and had walked out of our sessions.

As a Project team we were mindful that we needed to continue to work with Sharon in a way that made sense to her, and by March 2022 Sharon had participated in a workshop I ran where we created some remembrance artwork together with two of Sharon’s friends.

After this, Sharon said: 

"It made me feel sad but I am glad I got to speak about it. Thank you, and I would like to talk about this again with the Dying to Talk people." 

We’ve kept in-touch with Sharon since that workshop, and one of the striking themes that’s emerged from our time together exploring death and dying has been Sharon’s concerns about how she and her family are planning for the future. In this blog I want to share how we’ve been working with Sharon to address her worries and help her to make plans for the future.


Background

Sharon has a son, Bob*, who is 17. Sharon’s mum, Mary*, is 69. Bob has lived with his grandmother Mary for his whole life. Sharon asked her Mum to care for Bob after his birth as she was not able to due to her illness. Sharon and Mary have shared parental responsibility for Bob, and Bob’s Dad isn’t involved in his life. 


Working together

Sharon’s main concern having attended Dying to Talk sessions was what will happen to her son when her ageing mother dies? Sharon asked me to join her and her Mum to talk about her worries regarding Bob’s future.

At the start of our meeting it transpired that Mary had also been worried about what would happen to Bob when she dies, and she had contacted a Social Worker to discuss this. With Bob being 17 he doesn’t fit the criteria for Children’s Services or Adult Social Care, and Bob and his family aren’t in crisis. As a result of these factors the Social Worker wasn’t able to offer the support Mary was looking for, suggesting instead that Bob would go to live with his Dad when Mary dies, which isn’t what Sharon or Mary feel is in Bob’s best interests.


Practical planning

Mary requested that the Dying to Talk Project team help her and Sharon to arrange/document a plan for Bob, as she is very fearful of contracting COVID or dying before Bob is an adult and able to leave home.

I’ve since contacted Jackie Alexander, who is part of the Best Practice Team at MacIntyre, so that she can start some work with Sharon, Mary and Bob around future planning. The aim is that Sharon, Mary and Bob will have a plan in place so that when Mary dies there is a continuation of Bob’s care and, crucially, that Sharon and Bob will remain active participants in those decisions.


How the Dying to Talk Project is opening up conversations

As our meeting ended, Sharon said: 

“Thank you Rachel. I’m happy we’ve been able to meet with my Mum and start looking at the future for Bob. I’m glad I came to the Dying to Talk sessions, talked to you about my worries, and that we are going to work on a plan now.”


Sharon continued: 

“I’ve been worrying about this for a long time, but I didn’t know how to talk to my staff or my Mum because I didn’t want to upset anyone or jinx our lives. I feel I can make decisions about my life now and that they will be acted upon.”


Mary said: 

“As a result of Sharon’s involvement in the Dying to Talk Project she is no longer burying her head in the sand and is looking to the future, which is a huge relief for me.”


Why talking about death and dying is so important

Sharon’s story is one of many examples from the Dying to Talk Project of how concerns wouldn’t have been addressed and issues would have remained unresolved had a person we support not had the opportunities to talk about death, dying and future planning that the Project offers.

Sharon now has the confidence not only to speak to her home staff but everyone involved in her care, including her Mum. As Sharon said: 

“I now have a voice.”


Find out more about the Dying to Talk Project

Would you like to learn about Dying to Talk ?You can contact us using the form below.

*Names changed to protect identity

More about Death and Dying

15 Mar 2023
News

Dying to Talk - celebrating our impact

The project's final report showed how we helped people we support, their families and MacIntyre staff to understand how to talk about death and dying.

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26 Jan 2023
Blog post

What is the Victoria & Stuart Project?

Meg Wilding shares her experiences of being involved in Victoria and Stuart Project

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7 Dec 2022
Blog post

Using the "No Barriers Here Approach" to end of life planning

MacIntyre’s Dying to Talk Project Lead, Rachel Furniss, shares her experiences.

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16 Sep 2022
Blog post

How and why we must involve people with learning disabilities in talking about death and dying

Prof Irene Tuffrey-Wijne reflects on her involvement with the Dying to Talk Project.

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