• Your parent’s own grief may have meant they were unable to support you with your own grief. You may not have had any support from either family or professionals.
• Your parent(s) may not have talked to you about your brother or sister when you wanted to know more about their illness, their death, or to share memories.
  

• You may have misunderstood the cause of death and felt guilty that you were in some way responsible for it.
• You may have felt guilty about things that you did or didn’t do with your brother or sister.
• You may not have had an opportunity to say goodbye in the way you would have liked.
  

• You may feel that you also lost the family life you knew before your brother or sister’s death. Some families become very dysfunctional after a child’s death.
• The relationship you had with your parents may have changed. For siblings of terminally ill children, this may have happened some time before the child’s death.
  

• Some siblings find the original bereavement of their brother or sister is intensified or relived following the death of another relative, friend or pet, and that their reaction to a subsequent death is, in their view, out of proportion to the loss. This is a frequent experience for siblings who have not had the opportunity to grieve openly for their brother or sister.
• Childhood sibling loss can affect how adult siblings raise their own children, for example experiencing fear when their own child reaches the age their brother or sister was when he or she died.
  

Siblings who have grown up with a disabled brother or sister who has a life limiting or degenerative condition may experience grief over a long period of time as their brother or sister’s health deteriorates. There may be particular milestones, such as the onset of needing to use a wheelchair, that instigate this. Their condition might stabilise and plateau for a while, and then a further change may bring more grief. Siblings often compare their brother or sister’s lives to their own and may feel guilty if they are considered ‘the healthy one’. Some siblings may have been grieving at different stages and in different ways, throughout their childhood and young adulthood.

This might sit alongside feelings of chronic sadness for the loss of other aspects of the sibling relationship too. Read more about guilt and sadness in sibling relationships here.

Some siblings experience feelings of grief and loss from the time that they learn that their brother or sister will die. This is called anticipatory grief.

This might be if their brother or sister:

• Becomes suddenly very ill and is admitted to hospital
• Develops a condition that deteriorates over time, such as dementia
• Is diagnosed with a terminal illness, such as cancer

Read more about anticipatory grief at Cruse.org.uk

Grief is a response to loss. It is different for everyone and each bereavement you experience will feel very different. You may find yourself coping differently this time around to how you did with a previous loss.

Adult siblings often experience disenfranchised grief i.e. the way you grieve is not considered socially acceptable or the grief isn’t considered worth it. Loss of a disabled brother or sister sometimes means that their death and its impact are not fully acknowledged – some deaths seem to be less valued than others in society.

• People may say things like: ‘Well you knew they were ill..’ ‘Her health has always been bad…’ ‘He wasn’t expected to have a full life expectancy…’ ‘It’s for the best, you won’t have to be his carer now’.
• People may treat you differently and may not be fully sympathetic about what you’re going through, and how it is affecting you. You may feel there is an expectation that you’ll be able to deal with it pretty well perhaps because of their perceptions of your situation.
• Unfortunately, people might say things or do things that are really unhelpful or difficult to hear and experience, because they really don’t get it. This can be a very isolating experience for siblings.

Read more about feelings associated with sibling grief below.

“At work, apart from to a couple of close colleagues, I ended up saying that my brother died from an unexpected heart attack (which was strictly true) without going into the details about his health and circumstances.” – Adult sibling

At a time when you need the support of parent(s) or other family members, you may find that they aren’t able to be there for you because they are grieving too. You may feel the loss of this support very strongly. You may feel guilty because the grief of others seems more justified or that your grief is trumped by the grief of others.

You may be supporting your parent(s) with their grief and not had the space to grieve. You may feel you have to help your parent find a new purpose in life, if all of their energy and purpose was around looking after your brother or sister. You may be very concerned about how they will cope and if they will be motivated to look after themselves properly.

If you’re an adult sibling who has two or more disabled brothers/sisters, you may be supporting one brother or sister to cope with the loss of your other brother or sister who has died. If your brother/sister(s) has a learning disability, read more from Mencap about dealing with bereavement including resources to help you explain death and dying.

Adult siblings are often used to putting their needs second place to another person and you may find it difficult to acknowledge your own grief and your need for support with this.

Your parent(s) and other close family members may have already died. If your brother or sister didn’t have friends that you were also close to, you may feel that there’s no one you can really talk to who knew them like you did. You may feel like you have no one to share your grief and memories with.

You may have been one of the main caregivers for your brother or sister and may feel a loss for the caring role you undertook.

Many adult siblings’ identity is closely connected to that of their disabled brothers or sisters and you may be asking ‘Who am I without them or without this part of my life?’ You may have often been referred to as someone’s sister or brother since childhood. The work you do or the social networks you have may have been influenced by your identity as a sibling.

You may also have unfulfilled expectations. For example, if you have other family members (parents, other siblings) who were involved with your brother or sister’s care, they may now want to focus on their own lives and you may have hoped they’d spend more time with you.

Siblings experience a wide range of feelings when their disabled brother or sister dies. Siblings may experience feelings that are common following any bereavement, such as sadness and hopelessness, and they may also not experiences these. Read more about what grief feels like generally from Cruse Bereavement Support here.

Whatever you are feeling, know that it is OK – all feelings are valid. Here are some feelings that adult siblings often tell us about:

Intense feelings

At different times you may experience acutely intense feelings of grief – these may be happening a lot or may be triggered off by something you see, hear, smell, etc. or may happen when you have a family gathering or around a specific date or occasion. Some people struggle to cope with upsetting intrusive thoughts that they cannot get out of their head, especially at night.

Anger

You may feel very angry that services or treatments were not available for your brother or sister, or that they were treated with less dignity than others in hospital or a care home. There may have been neglect or negligence in your brother or sister’s care leading to their death and you want to seek justice on their behalf.

Envy

You may feel envious of other people whose brothers and sisters are still living. You may find it hard to hear people complaining about difficult aspects of their sibling relationship, when you no longer have yours but might feel like you’d give anything to have it back.

Relief

You may feel relieved that your brother or sister has died, because it may mean that there are painful or difficult experiences that they will stop having or that they won’t experience in the future. For example, if they were ill for a prolonged period, you may feel relieved that they are no longer in physical pain. If they were living with older parents and you were worried about them moving out in future, you may feel relieved that they won’t have to experience this.

You may also feel relieved that there are experiences you won’t have now or won’t experience in the future. This might depend on your relationship with your brother or sister. You might feel relieved about things like not having to interact with them any more, not experiencing challenging behaviour or not having to provide care.

Guilt and shame

You may feel guilty about things like – how much time you have spent with your brother or sister; resentment about care tasks; relief that you will not have to care in the future; or having survived.

Some siblings feel shameful about having feelings like these and worry that if they shared them with others, they might think badly of them. At Sibs, we want you to know that you have nothing to feel ashamed of. These feelings are very common for siblings.

Loneliness

You may be the only sibling left in the family and begin to question your own mortality. As well as missing the time you spent with your brother or sister, there may be no one else in your family now with a shared history of your childhood and all the unique things that your family did.

Your brother or sister may have had a particular role in the family or within your sibling relationship – such as being the best at picking the presents for your parents. You may feel you have no one to go to with those things now or may feel like you have to fill their shoes in this way.

Your position in the family may have changed – perhaps you have become the eldest or the youngest sibling. It is often difficult to find the right words to the question ‘How many brothers or sisters do you have?’

Your parent(s) may have already died and you may have no other close friends or family who really knew and understood your brother or sister – and no one you can share your grief and your memories with.

You may have to navigate the practical side of your brother or sister’s death, especially if you were their only remaining close relative. This might include things like registering the death, arranging a funeral, and dealing with wills and probate. For more information on dealing with the practicalities surrounding a death, read this advice from Carers UK.

“I supported my sister in her final days and then got wrapped up in the practicalities of arranging a funeral, sorting out her possessions and finances etc. I had to be very stoic and this delayed when I could have the time and space to grieve. It really helped me that my deceased mother had arranged for a funeral plan to be bought for my sister many years ago as she worried about there being money to pay for a funeral.” – Adult sibling

If you have an employer, or you’re at college or university, tell them that your brother or sister has died and ask what time off you can have. You don’t have to share the circumstances around the death and if they don’t already know that your brother or sister was disabled, you don’t have to share this with them unless you want to. You may be able to access other support too, such as counselling that may be available through an employee assistance programme or through student wellbeing services.

If you’re sitting exams at college or university, ask what other support is available or if it’s possible to sit them another time. Some siblings find they want to keep going with exams because it’s a useful distraction for them, others want to take a break and do them another time – do what works for you.

More information:

• Child Bereavement UK – When you’re bereaved at university or college
• Marie Curie – Support for bereaved employees (includes information on your entitlement to bereavement leave)
  

It’s important to allow yourself to experience the pain of losing your brother or sister. As a sibling you might feel that you should just ‘get over it’. But unfelt feelings don’t disappear – they will only come up again at other times. We need to experience the powerful and painful feelings, in order to find a way of living with the loss.

To acknowledge their feelings, some siblings find it helpful to:

• Express their grief by talking about it with a friend, partner or family member.
• Shout, scream, cry.
• Keep a diary or journal.
• Express feelings through music, art or sport/exercise

Remember your grief is unique to you. You may behave in ways that you don’t recognise, but difficult experiences call for different methods of dealing with them. Focus on what you need as much as you can.

Try and look after your physical and mental health whilst you’re grieving. It’s not always easy to do, but it really does make a difference.

• Keep up your usual exercise routine. If you don’t have one, try and find some way of moving that feels good for you –  kicking a football in the park, taking care of small children, going for a short walk.
• Aim to get outside once a day if you can. Even opening a window for ten minutes and taking in some fresh air makes a difference.
• Consider using a meditation or mindfulness app like Calm or Headspace. Many have grief programmes you can work through.
• Keep in mind that relying on drugs and alcohol will only give you temporary relief and can lead to future dependence.
• Eat nutritious foods. If you find you need help with meal prep, ask friends or family if they can bring some meals round that you just need to heat up (particularly if they ask the question “Is there anything you need?”)
• Drink water regularly.

Do what you can and don’t beat yourself up for not doing ‘enough’ or doing the ‘right’ things.

It’s OK to take a break to do something nice for yourself – grieving can be hard work.  Remember it is perfectly OK to laugh and enjoy yourself even though you are bereaved.  Life does go on and grief is best described as a rollercoaster – there will be ups and downs.

And it’s important to keep being kind to yourself too. Try not get bogged down in regrets about what you might have done differently in your relationship with your brother or sister, or what you did or didn’t say.  If you can let go of these regrets it will help you to focus on some of the good memories and the positive things.  Some grief is complicated because of negative relationships or the manner in which your brother or sister has died – you may need extra support to process these feelings. Read our advice on how to find a counsellor.

Give yourself plenty of time. There is no set time or pattern for grief and it varies for all people. Be patient and take the time you need, without feeling pressure. Also, it is best not to make big decisions soon after brother or sister has died. Give yourself the time and space you need before returning to these.

Although your brother or sister has died, this doesn’t end your relationship with them. If you were used to regular contact with your brother or sister (for example, telling them your news) then perhaps continue to do this by emailing or writing this down. Many people continue to have conversations with the person who has died. Some have a sense of their presence or experience them in dreams.

Certain things may help you to process your loss and grief in different ways.

Some siblings find it helpful to:

• Find out more details about how their brother or sister died. This will be a particular challenge if your brother or sister’s death was unexpected or preventable.
• Look for meaning in the loss. This could be by recognising how your relationship has shaped you and the strengths you have developed as a sibling.
• Re-imagine the future. Allow yourself to think about ways in which parts of your future may be positive for you. It will be a very different future but with aspects that are now possible for you that were not previously possible.
• Spend a few minutes each day to notice three things that they are grateful for in their life. These may be small everyday experiences like ‘enjoying a nice cup of coffee’ to ‘feeling glad that I have a close friend who cares for me’. Many find this surprisingly effective.
• Make a memory box, photo book or video of moments that are meaningful to them in their sibling relationship.
• Write no-send letters or journal.
• Do something active that reflects their brother or sister’s legacy.

“I got a lot of joy from passing my sister’s small legacy in financial gifts to help fund small projects like footpath improvements in the local park where she loved to walk.” – Adult sibling

Some people find peer support helpful. Being with people who understand what it’s like can be both supportive and empowering. Hearing about the coping strategies used by others can give you the permission or motivation to try similar things.

Some siblings experience anxiety or depression in addition to the grieving process. Some can get very stuck in certain feelings – such as the feeling that grief will always be this painful and that there will never be anything good about life again. If the circumstances around the death were traumatic (particularly if there was a level of abuse, neglect or if the death was preventable), some siblings may develop post-traumatic stress disorder (PTSD). It’s important to seek treatment for any mental health condition.

You can:

• Speak to your GP about your symptoms
• Read our advice on how to find a counsellor.
  

This first year following a bereavement can be especially hard. You might be wondering how to cope with the first anniversary of your brother/sister’s death or other events throughout the year when you might normally be together, such as birthdays, anniversaries, festivals and religious celebrations.

Everyone approaches this differently. Some siblings prefer to mark these occasions and others prefer to distract themselves and not think about it. There is no right or wrong, no should or shouldn’t – you are allowed to process this in whatever way works for you. Read more on coping with anniversaries from Cruse Bereavement Support.