Grieving the Loss of Sibling with Disability

Grieving the loss of a brother or sister with a disability can be complicated. As with all family relationships, it can depend on the nature of the relationship with your brother or sister, alongside other family dynamics. My sister Helen passed away in 2013 at the age of 64. She was four years older than me and lived with cerebral palsy which included both physical and intellectual disability. Helen’s disability meant that she struggled with mobility and communication and needed support with all daily living tasks. Whilst she had a big personality, loved to laugh, and adored her family, her life was full of challenges.

Helen died quite suddenly so I had little time to prepare. My father had passed away two years prior, and my mother had developed dementia, having lost any awareness of us over the space of several years. As the only sibling, I had taken on the role of advocate and supporter for Helen and had been appointed administrator so I could manage her finances. Helen accessed both supported accommodation and employment. She seemed healthy, despite the challenges her disability brought about, and so, I had thought I would have a role as her ‘big little sister’ for years to come.

In many ways, I had been grieving for my sister my whole life, for the daily struggles she had, and my inability to ‘fix’ them. I also grieved the losses for my parents as they too watched her struggles. Whilst I, like other siblings, could claim we had developed increased understanding and acceptance of difference, and/or an interest in social justice, to me, none of that would ever compensate for Helen’s challenges.

Of course, each sibling’s situation is different. The circumstances of the death, the ages of you both, whether the death was sudden or following a long illness. You might have had a close relationship with your brother or sister and grieve the usual types of memories of shared times together, much like other siblings. For me, and many other siblings of people with disability, grief is more the ‘what ifs’, the things we felt we could never do, like chatting on the phone, shopping together, sharing the birth of our children and so on. And for ‘only’ sibs, these feelings can be exacerbated, as you watch the relationships that friends share with their siblings.

I was lucky to have a supportive husband, two daughters and extended family who helped me through my own loss alongside theirs. Also, there was some relief that my parents were not present or aware of Helen’s death and needing to work through their grief too.

Supportive husband

Finding Support and Moving Forward

Some of the following ideas might help you through your own time of grief, whether it was recent or some time ago.

1. You are not alone. Other siblings of people with disabilities will share some of the same complex feelings. Whilst never the same, there will be acceptance and understanding of your experiences. You could join SibChat,the ‘adult siblings’ Facebook group hosted by Siblings Australia, or one of their face-to-face SibConnect groups. These groups include other siblings who have lost a brother or sister with disability.

2. Talk about your feelings. If you are not connected to other sibling groups as above and don’t have friends or family who understand, it might help to see a counselor where you can explore any complex feelings. Alongside sadness, there might be regret, guilt, anger, or even relief that their struggle is over. I had always worried that my sister would develop a serious illness, as I had done in the past, and I had some relief that she would be spared such trauma, given her extreme fear of doctors, nurses and hospitals. As an aside, when we were children and visiting the Royal Show, we had spent considerable time in the chicken pavilion because she had seen an ambulance outside and wouldn’t leave!

3. Find ways to celebrate and remember. My family planned a beautiful funeral for my sister, with her favourite music and other interests, such as the Crows football team scarf, on show. I have a ‘memory box’ of photos of happy occasions over her life and, when our immediate family gathers for significant days, we light a candle in her memory.

4. For many siblings, their identity is connected to their brother or sister with disability. For me, I was an advocate and supporter and loved sister, but not a direct caregiver (apart from short visits). If you had a more active caregiving role, try to value what you did but also find other ways to find meaning now that this role has come to an end.

5. Each person grieves in their own way. You might feel isolated, or even angry, if other members of your family don’t show the same response as you. You can’t assume that they aren’t hurting or that the loss is not impacting them. Nor is it helpful to put pressure on yourself to feel more if the situation is reversed. Try to have compassion for yourself and others as you go through your own process. 

6.Be kind to yourself. There will be ups and downs as you process your loss and the other feelings that might arise. It is easy to feel that we didn’t do enough or that we could have been ‘better sibs’, but such feelings go nowhere. Make time to look after yourself by eating healthily, exercising, and seeking help for your mental health if needed. 

Grieving the loss of a loved one is never easy and disability can complicate it further. With compassion for yourself and others, it is more likely that you will be able to reach a place of peace, alongside any sadness and/or other feelings that might arise.

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