Bereavement and TSC

Information and support when faced with losing a loved one in the TSC community

Losing a loved one can be one of the most challenging times that you will face, and it is natural to experience many different emotions. There is no right or wrong way to deal with a bereavement, and everyone reacts in their own way.

For those in the TSC community, a bereavement can have even greater complexity depending on how an individual or family is affected by TSC. For example, the heartache of a bereavement could also mean a volunteer carer feeling a loss of their identity, or someone with additional needs needing extra help to understand and work through emotions and practical issues regarding bereavement.

Talking to someone about how you’re feeling when going through bereavement

There’s no right or wrong way to deal with a bereavement, with everyone reacting in different ways. Good days, and bad, are normal and may be compared to waves on a beach.

You may find it helpful to speak to a friend of family member about how you’re feeling. However, sometimes it can feel easier to talk to someone outside of your family and friends circle about a bereavement.

The TSA Support Line can offer a listening ear, as well as practical support. You could also contact your GP to discuss the possibility of one-to-one counselling with a local bereavement counsellor, if you think this would be helpful for you.

You also may find it helpful to seek specialist support from a bereavement support charity.

Through Cruse Bereavement Support’s helpline and online chat, you can speak to an expert grief counsellor to make sense of how you are feeling
If you’ve lost a child, or have a child who is experiencing grief, Child Bereavement UK can offer specialist support to children, young people and families
You can speak to a trained bereavement counsellor online through charities partnering with GriefChat, including Epilepsy Action and Mencap (9am – 9pm and by email info@griefchat.co.uk outside of these hours)
You can find further bereavement support and information resources through At a Loss

The loss of someone you cared for

Your role and responsibilities as a carer may change or end when you lose a loved one with TSC. Caring for your loved one may have been at the centre of your life for many years, and when this changes it can be an extremely difficult adjustment that comes with complex emotions.

You may have lost contact with friends and family due to the demands of your caring role, which can feel isolating. When grieving, these feelings can be amplified even more. However, it’s important to remember that you’re not alone – loved ones, the TSA, health professionals and other charities are here to support you.

You may find it helpful to read the gentle recommendations from Carers UK and Marie Curie to support you with bereavement and changes to your caring role.

It is natural to grieve for the loss of your caring role, as well as the loss of your loved one. You may also feel many different emotions, but remember that no single emotion is ‘wrong’.

Supporting people with learning difficulties through a bereavement

People living with TSC and learning disabilities experience bereavement and loss, just like everyone else. Having a learning difficulty or disability does not mean that a person cannot be affected by or understand the loss of a loved one.

If someone with learning disabilities does not react in a way that you expect during a bereavement, you should not assume that they do not understand the situation, or are coping any better or worse than others. However, learning disabilities may affect how an individual with TSC and learning difficulties communicates, reacts and deals with their grief.

Depending on a person’s level of support needs, easy read guides about bereavement can help to illustrate and explain bereavement and the loss of a loved one.

Mencap provide resources on supporting an individual with a learning disability with bereavement, including booklets for carers and easy read guides. They also have easy read guide on how to use the online GriefChat to speak to a specialist grief counsellor through their website.

Books Beyond Words also offer wordless picture stories on a range of topics, including grief and bereavement, that may be helpful for communicating about bereavement, loss and grief with an individual with learning disabilities.

Being a sibling and facing bereavement

The deep impact that losing a brother or sister can have on a person is impossible to overstate. For someone whose sibling had TSC, the loss can be shaped by even greater complexities and challenges depending on how TSC affected the individual.

Siblings of people who have passed away can experience unique emotions and situations following the death of a loved one, no matter what your age. Bereavement of a sibling can be incredibly lonely, with the bond between siblings (and in particular siblings where one lives with a condition like TSC) being often unrivalled.

Sibs encourages siblings who are experiencing bereavement to meet with others who have or are in similar situations. As the experts in siblings of disabled brothers and sisters, Sibs also has lots of other resources and support around bereavement.

In the words of siblings charity Sibs: “When a parent dies you lose the past. When a child dies you lose the future. When a sibling dies you lose the past and the future.”

Are you going through a bereavement or planning for end of life? The TSA Support Line is here to offer a listening ear

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