SIBS: Part of the partnership

My mum worried that nobody would be able to look after my brother like she did, the worry blighted her final years.  She was of course right, not a single member of his team can cook a Victoria sandwich or a Yorkshire pudding like she did – but life goes on and he comes to me for his Sunday dinner anyway.

Families place a huge amount of trust on the organisation and individuals who support their loved one. Most of the time that trust is well placed. I’ve learned not to stress about how white my brother’s vests are and buy grey ones for him (sorry mum!) For the rest I know that his team give brilliant care and support and are as invested in his health and wellbeing the same way I am.

Mum and dad worried that their son would be a burden to his sisters. This has never been the case!  He did his fair share of being an annoying little brother, pulling my dolls legs off, drawing on their faces etc. but my friends with typical brothers had the same issues. Mum and dad tried to ‘spare’ us responsibility even when we actively tried to do more. It’s Siblings day today but I’ve got a message to parents – don’t push your adult children out of their sibling’s life, encourage involvement and let the love flourish.  Let adult brothers and sisters gradually get involved with the formal stuff (social workers, reviews, managing money etc.) because it’s better for us than an abrupt start when you die – as we all do!

We lose sleep, feel guilty, hopeless and don’t know where to turn for help.  Sometimes we say nothing for fear of making things worse. This year we worry about the loved ones we cannot see. Will anybody else notice the subtle signs of distress that we know so well? Who is crossing the threshold to check in on them?

This national Siblings day I want to encourage families – siblings as well as mum and dad – to speak up, to share your gut feelings, to ask questions, to share your hopes and fears with the people who give day to day support to your loved one. To play your part in building a real partnership.

In the same breath I say to colleagues, don’t be complacent, don’t take an absence of complaints or communication to mean everything is ok. Raising concerns doesn’t come naturally to most of us. We fear conflict, we don’t want to upset anyone, we don’t know how best to tackle concerns or fear we will be misunderstood. If we’re overly sharp please do remember that we will have had a lifetime of fighting ‘the system’ every step of the way to secure the right support for our loved one. It’s physically and emotionally exhausting, learning who to trust. Always ask yourself ‘is this support good enough for my own child, brother, parent?’ and if it isn’t, ACT!

If you are a relative or friend of someone supported by Dimensions or Discovery and you have a concern that you don’t feel confident to take to the manager or team, or you want to talk it over to get it clear in your head before raising it, get in touch with our family helpline. We are here to help.  The Families’ Team are all parents and siblings. We can work with colleagues so that your voice is heard, and your views acted on whenever possible and practical.

If you’d like to have a general chat with other families and the team, please join one of our zoom sessions. Ring or email the family helpline and we will send you a secure link to join the calls.