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What will happen when l am gone? FAQ

Death, illness and bereavement are something we will all unfortunately experience. It is distressing for everyone, and not something anyone likes to dwell over too much in advance. However, when you are a carer of someone with a severe learning disability, there can be extra worries about what will happen after your death. This FAQ has been written to help answer some important questions family carers may have. You may want to share this with other friends and family who will continue to be a part of your relative’s life.

 

Q: “Who will be responsible for the welfare of my relative? Who will ensure they are protected?”

A: One way to try and ensure there is continuity of support throughout your family member’s life is to set up a Circle of Support.  Circles of Support are a network of people that are committed to supporting your relative and ensuring they have a good quality of life –and can continue to do so after parents / primary carers have passed away. Once a circle of support is set up, it is good to encourage members to visit the relative often – this will give the message to your relative (and those who may care for him) that there are always people around to ‘keep an eye on things’. You can read more about Circles of Support in our FAQ and on the charity Circle Network’s website.

If you are a Deputy for your relative, it may be helpful to think about who will take over this role if you are no longer able to do so.  The court of protection will only appoint a new Deputy if:

  • The person still needs a Deputy
  • Someone applies to be the Deputy 

The court can appoint a Panel Deputy or a local authority deputy if no one applies for the role.  You can read more about Deputyship and how to apply to be a Deputy in our information sheet, ‘Getting legal authority to make decisions about money, property & welfare’.

A Social Worker / Advocate can be very important for smaller or more isolated families, where there may not be relatives who can take over the caring role. If there is already a social worker / advocate involved in your family member’s support who knows them well, they would automatically continue their role. You may want to discuss with them what their role will be in the future, and make sure they understand the plans and aspirations that person may have.

 

Q: “How will my relative cope with the distress of losing a family member – how will this be explained to them and will they understand?”

A: Bereavement is upsetting for everyone; however it may be confusing for someone with learning disabilities who may not understand. When someone struggles to use and understand verbal communication, explaining an abstract concept such as ‘death’ can be very challenging.  However, there are several ways to help them prepare and cope with death:

  • Try to use opportunities to talk about death beforehand – for example, use the death of a pet / plant to try and explain the life cycle. By involving your relative in caring and visiting ill family members may also help them to notice changes in health over time. This prevents death being a ‘sudden disappearance’.
  • Use clear but kind language - it’s important to note that euphemisms (e.g. ‘gone to sleep’) which may comfort us can actually cause further confusion for someone with a learning disability.
  • Use stories and images Booksbeyondwords have a number of social stories that aim to support someone with the death of a father, mother, or someone else. These stories provide information in a way a person with a learning disability can understand fully, taking account of the way they view the world and what is happening. They can help people understand the sequence of events (e.g. after someone’s death there is a funeral) and therefore may help reduce anxiety about what is happening.
  • Creating a life story/memory book – this can be a nice way to help your relative remember the person after they have passed away

There is a host of information online to support someone with a learning disability in their grief. Take a look at Easyhealth website for an easy to read booklet on supporting people with disabilities coping with grief and loss, NHS UK information and also the Foundation for People with Learning Disabilities website. It may also be helpful to seek support for your relative’s bereavement from the Community Learning Disability Team, who may know what support is available locally.

 

Q: “My family member lives at home / relies on me for support – where will they live? How will they be supported?”

A: There are many things to consider and plan for, and it can be a daunting task, but researching and planning as much as possible in advance can give you peace of mind that your relative will be looked after. It is helpful to make sure plans are written down, and that several different people know where it is kept.

Person Centred Plans

All plans for the future should be written into a Person Centred Plan (PCP).  A PCP should include a positive ‘vision’ of what life should look like for the person, focusing on their strengths, abilities and preferences, and what support will be required to achieve this vision.  A PCP ensures that the person remains central to any plans made for their life, including what happens after their main caregivers are no longer able to support them.

Housing and support

If your family member lives in the family home or relies on you for some of their support, it would be helpful to include housing and support plans for the future in their PCP. This could include:

  • Where your relative would like to live and where would meet their needs (this may be the family home)
  • What kind of support will your relative need
  • Who will provide this support

Useful contacts and resources: Challenging Behaviour Foundation’s 8 Ways to get a House information pack, Thinking Ahead guide 

The PCP can be reviewed annually, and it’s important to make sure people who know your relative well have a copy and that social services have it on file.

Financial Plans

Other plans you may want to think about are, how your relative can be supported financially in the future.  Plans that could be put in place include:

  • Making a will
  • Setting up a trust
  • Appointeeship

Useful contacts and resources: Mencap’s Wills and Trusts service, Thinking Ahead guide

Involving your relative in decisions

Your relative should have as much say as possible about decisions that will affect their future life. Under the Mental Capacity Act (2005) it should be assumed that everyone initially has the capacity to make these decisions. They should be supported as much as possible to weigh up the possible options and communicate their wishes. If they do not have the capacity to make these decisions then a decision must be made in their best interests – by consulting family members, professionals and others who know the person well. You can read more about this in HfT’s Mental Capacity Act guide.     

Emergency plans

As well as long term plans, you may want to make a plan for what will happen in an emergency e.g. if you go into hospital unexpectedly.  Without a plan, it may be left to people who do not know your relative well to make decisions. It is therefore good to think ahead to prevent this. This Thinking Ahead guide is a useful tool to help families think about what to include when creating an emergency care plan and what others will need to know about their relative and suggestions of safety nets you could put in place.

 

 

 

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