Making Caring Visible

It’s the end of this year’s Carers Week and we have a lovely blog post from our Housing Manager, Lisa, about what it means to be a carer in two very different circumstances.

Parent caring

Caring or being a career is extremely lonely and isolating, I brought my disabled child up on my own and for many years had no one to talk too, to share my worries and concerns or the highs and lows.  Parenting doesn’t come with a handbook I didn’t know anyone who had the experiences I was going through, we didn’t get the invites to birthdays/days out/sleep overs and schooling was a nightmare, first while I fought for the right level of support, then once in an extra needs school the travel was an hours drive each way.  I was constantly exhausted both physically as well as emotionally and I often thought what if I just stopped what would happen? As a parent you don’t though, you realise that no one else will do this and it’s down to you.

Once FB support groups started to pop up I joined Bristol Autism Support, my lad was in his teens by then and I had finally found my tribe.  As a support group we have been through every high and low there is, through legislation changes, cut back after cut back on services and still we fought our corner.  Having those connections made it just that bit easier and being able to talk, meet up and develop friendships and days out with other families.

My son has now left home and is an adult enjoying every minute of it too, I still stay in touch and make an effort to support those new parents now who are coming into the group and finding their feet.  It makes me feel fulfilled being able to do that and I hope that the next generation of new parents are able to find things a little bit easier and less isolating with our support group.

Family caring at a distance

I am my brothers advocate and next of kin and he lives far away near Scotland in supported living accommodation, my brother has a lifelong learning difficultly Trisomy 21 (often called Downs Syndrome).   He has been sectioned twice under the Mental Health Act, the last time getting lost in a system that took nearly a year to track down.

Being my brothers advocate means that I need to attend frequent meetings at least once a week,  being the critical friend in the room and reminding everyone (including myself) that my brother is the most important person.  It’s been hard at times having to stand up and be firm in my convictions of what is right for him and I constantly worry about if I am doing the right thing. I have to keep reading up on legislation and how they interact (or not) with each other in particular the Mental Health Act.

It’s been terrifying during the lockdown, the level of trust you have to have with the care team is huge, we found that its vital to keep communication open and honest, which came to a head when he was rushed into intensive care a couple of weeks ago.  After a tense few days he was discharged but it made us all realise just how scary it is for not only us as a family but also the staff and their families too.

It’s a lonely role but as the population ages one that I think will be more and more as middle aged humans take on the caring roles of parents or disabled siblings and I think that it is often overlooked/ forgotten.

I’m lucky that Second Step understands my role as a carer, they allow me to set my working day up around the meetings or to take time off to travel and visit my brother as well as extra support from HR, the union, EAP and most of all my work friends.