“The siblings carry a huge weight” – Eleanor’s story

Eleanor has been supporting her sister, who is living with schizophrenia, since 1968. With Rethink Mental Illness, she works as a Siblings Support Group Coordinator, holding a very unique space for other sisters and brothers in similar situations. 

How I became my sister’s unpaid carer 

My dad died in 1983 and my mother in 1992. I was my sister's advocate from the time my mother died. I was actively involved in her care from 1968, when she was 16 and still at school. I was included, but also separate to her care team. My sister wanted that, but it was understood with her non-verbally. Therefore, it is difficult to separate us in terms of her story and my story.  

The sibling and carer role 

I have always tried to create space between us for her to express herself in her own way. My sister never discussed her mental illness, but she did know that she needed help. If I tried to ask her about how schizophrenia impacted her, she would have diverted in a confused manner. It is incredible that we managed a 50 year journey in that way.  

I was always available to speak to health care professionals, but didn’t want to take over the relationship she might have with staff. I accompanied her to as many medical appointments as I could. It was never easy - she kept running off to find a secluded spot or a hideaway to miss an appointment.  

She also needed me to be an advocate and spokesperson, as and when she got into difficulties. Her level of functioning was very low, which is why when escaping and running around the country, creating chaos and confusion, she needed 24/7 support. Stuck in various cities at night with no money, tickets or obvious plans, she needed someone to speak on her behalf.  

At that time, no-one talked about mental illness. There were no books, no support groups and while my parents received decent support from psychologists, such as family intervention therapy, I was aware that I needed to find some way to deal with the impact on myself. I had to make sure that my own mental health was well kept.  

I worked out early on that I didn’t want to burn out - I had no idea how long this journey with her would be. I found various 'healthy' ways to do it and it was a long journey. It meant stepping outside the box, getting the right people around me to help facilitate the process.  

I know how challenging it has been for myself and my parents to actively support my sister, as there was so much to come to terms with over the years. With my parents, we really were a team. We were fortunate that Shirley accepted our support. It is so often not the case.  

Shirley lived for 30 years in a mental illness nursing home, but this was not a sedentary arrangement – she came and went. We were always concerned that she would blow her arrangement with the home. She never did. Fortunately, for her and for us, she always came through as a lovely personality – her sunny demeanor always shone through.  

Why I support other siblings/carers 

After a long journey, someone told me, 'You should have got over this by now!' That comment makes me want to support the so called 'well' siblings with their day-to-day challenges, as not everyone gets the support that they deserve and there should be no timeline on how quickly the ‘well’ family members recover. 

I attended many EUFAMI (European Federation of Associations of Families of People with Mental Illness) conferences to meet families across Europe, dealing with similar and different situations. It was hugely beneficial to meet other families coping with these difficult issues; the impact of grief and loss. What is so extraordinary are the different stories and experiences, but also the common ground. All the stories seem to resonate one with another.  

Siblings can take on a huge amount of the family burden, whether they are living in the same country, city, town, house or alternative accommodation. The siblings carry a huge weight.  

Through Rethink Mental Illness, I meet families where real support doesn't exist. While we originally set up this group to support siblings dealing with schizophrenia and bipolar disorder, we do see more siblings creeping in who deal with depression, social anxiety, eating disorders and so on. We do not have all the answers, but all of our regular members are very supportive and there is a common ground for many.