My brother, Mark, has periventricular leukomalacia which is a lifelong disability caused by damage to his brain around the time of his birth. This has impacted him physically, cognitively and made him partially sighted. He has always lived in boarding schools or supported living due to the level of his needs, including challenging behaviour. Mark needed more input than my parents could provide him.
Mark was abused and neglected in supported living
My family have always felt Mark should be able to lead his own adult life as he would if he were an adult without a disability, however he struggled in supported living. His level of understanding and capabilities with daily tasks are a lot less than they appear and nowadays his behaviour has settled so he gets overlooked and often neglected. He also has the kind of personality that meant he was an easy target to bully. At Christmas 2019, he had to leave his supported living due to abuse from his carers.
Mark’s mental health was badly impacted by the carers who had managed to completely turn him against us. We had always been his safe place but he had been told that we were trying to control him. He was completely paranoid about us and didn’t know whether he could trust us or not. He was also really confused.
He moved in with my dad temporarily as an emergency placement and expressed his long-held wish to live in his own flat.
Mark moved ‘temporarily’ to live with Dad
Unfortunately, covid then hit and Mark became stuck at my dad’s house with both of them effectively shielding. He wouldn’t even go out for walks because the government had told him to “stay at home”. He watched endless hours of TV about covid and became scared and quite obsessed with it all.
Mark wanted to live in a flat alone, but social services appeared to be doing nothing. They basically said social housing wasn’t safe for someone like my brother and kept showing us supported living. I found out later that the social worker was avoiding me because he had no solution to how to get my brother housed in a flat on his own.
I wanted my lovely brother back
We were a close family, we always put Mark first and had always encouraged his independence. It was my parents who first taught him to go to the post box alone as a teenager and taught him to catch the two buses to visit my mum. We were all firm believers that my brother could do anything with the right support and encouragement.
I asked my brother once if he trusted me and he looked at me scared. That was a turning point for me. I had lost my brother and I was going to get him back. The one relationship he still trusted was that of my young son, who was 5 at the time. They had a lovely relationship where my brother could be a loving uncle and my son didn’t treat him differently to anyone else.
I was lying on my bed, exhausted, (as I was suffering from long covid myself) and I started to imagine a house with an annexe. My brother could have his own flat, his own space, his own carers. He could basically live independently but could share a garden with us. He could spend time in the environment of my young family, with all the joy and laughs that young children bring to life. Obviously in my head the sun was shining and everyone was happy!
We needed an annexe
I mentioned this idea to my dad, really thinking they wouldn’t agree with it, but to my surprise the family (including my sister who lives abroad) really liked the idea! We all started separately looking at properties for sale and sending them to each other. Of course, none of us actually told each other we thought it could work!
Lo and behold, there was a house in our small town with the perfect annexe extension. We set up a few viewings, firstly just me due to covid and then we showed my brother. We all loved it! Within 6 months my dad had sold his house to free up money and moved into my old house. My brother, my son and I moved into the new house with the annexe. We are also now only 3 minutes’ drive from my dad.
This was a big sacrifice and upheaval for us all. I knew that despite sacrificing some of my independence, I would be better off knowing that my brother was being cared for properly and was living the independent life that he wanted. I’d been having panic attacks and anxiety due to the situation in his supported living.
I battled to get Mark the care he needed to live independently
I found a brilliant care agency who provided personal assistants. I decided not to go for direct payments, because I had enough on with moving house and changing my life. I didn’t need the added stress of getting my head around direct payments. I also discovered that the direct payment hourly rate was less than the care agency I found.
It took a year, an Occupational Therapy and Speech and Language Therapy assessment (to prove what I was telling them about his understanding and abilities was true), a review by a sight impairment charity (again to prove what I was saying was correct) and a lot of emails and phone calls to get the care my brother needed.
I had to make it clear that I had provided a roof over his head, but at no point had I agreed to cover care and that he didn’t want me providing care. I had to make it clear he didn’t want me helping him to get up and washed and dressed at the weekends, and that I had a young son to consider. It was a real battle. At one point social services told me that if his care needs were that high then he should be in a residential home. What happened to choice! At the end of 2021, I received a very short email saying they had agreed to fund the care. I’ve heard nothing from social services since and the email was almost like a note. I didn’t even believe it until they paid the first invoice.
We’re still fighting to ensure he gets the correct benefits and we had a battle to ensure social services didn’t take almost all of his money to pay for care, but finally the battles are lessening and we have a bit of status quo.
I feel quite alone with the responsibility
Mark finally got covid in April 2022. He rings on my doorbell at night if he’s unwell so it meant a few broken nights. I spent time trying to help him understand that he was ok and didn’t need to be scared. Even after he was better he was scared of it coming back. He did the full 10 days stuck in his flat, although I did encourage him into the garden a few times. It was really hard for him. His carers reduced his hours to reduce their risk so he had to spend a lot of time alone and I either went in briefly or facetimed him.
He was calling me a lot and I didn’t get a rest at all for a week, which wasn’t great especially with my own long covid to manage. The care agency were good. They tried to support me as well by offering my brother phone calls when they weren’t there, but I did feel quite alone with the responsibility of making sure he was emotionally managing OK. It makes you realise how alone you are. There are no services there to check on you. It’s literally you and the care agency doing everything.
It was hard to trust another care agency again, but they have been amazing
The care agency I chose have been absolutely amazing and so supportive of me learning what my role is in this process. It was hard at first as I felt responsible to my parents if anything went wrong. It was my idea and I was the one in the house. They saw me as the one taking care of him, but I’ve slowly been showing them that I’m not in charge.
It was so hard to trust the care agency after what others had done in the past. Small things like not managing his personal care properly were signs of much bigger problems of emotional abuse and therefore I found it hard to ignore these smaller things. I hated it because I felt I was turning into that person who was always trying to control things, when I’ve never been like that before. But I just didn’t trust anyone.
Slowly, I’m starting to return to that loving sister who lets him get on with his life with the help of carers. I just manage some of the more overall organisation of blue badge applications, planning birthdays etc. My parents are not here everyday so it’s taking them a little longer to see that he’s OK now. I’m trying to help them to realise that it’s OK, he’s OK and we can let go a bit again. I’m here now. If anything starts going downhill, I can nip it in the bud.
I have the loveliest relationship with Mark now.
We both go into our own homes when we want a bit of peace, but Mark comes to me now if he needs reassurance. He knocks on my door to offer me a cuppa and he has lots of cuddles with my son.
It’s still hard. There’s still frustrations at times with the carers, but that’s the same anywhere. No one is ever going to provide the same care as his family, but the carers are the closest we’ll get. He’s happy and he’s back at his activities, going out every day. After a horrific few years (even before covid) for all of us, I can finally see the light.
I’m always waiting for the next issue though. Social services trying to remove his care…I’m always a little alert for the next set back. But I try to enjoy the sunshine whilst it’s here.
All names have been changed.