Shona and Brandon care for each other. Shona, 51, supports her son Brandon with his learning and mental health difficulties. Brandon, 24, provides Shona with practical support to help her manage the symptoms of her kidney disease.
Shona’s Story
My son Brandon, 24, was diagnosed with learning difficulties and anxiety when he was a teenager, but my caring role for him really began during the lockdown, in May 2020 when he was 21.
Suffering with prolonged bouts of low mood and depression for some time, Brandon put on a brave face, ‘carried on’ and didn’t tell anyone how he was really feeling. Then, during the lockdown, he suddenly started crying a lot. We contacted our GP who prescribed anti-depressants and diagnosed him with depression. He then shared with me that he didn’t want to live anymore but couldn’t really tell me why. As a mum, it was a shock to hear that my son, at only 21, felt like this.
Brandon’s behaviour then began to escalate. He began self-harming, and his suicidal feelings were intensifying. He was urgently referred to the Mental Health Crisis Team after a trip to the local A&E due to his strong feelings of suicide.
I was now on permanent suicide watch and I had done my best to remove any potential dangers. Brandon was also starting to become quite aggressive, which is totally out of character for him, and because he couldn’t sleep on his own, I couldn’t leave him. He was then diagnosed with Obsessive Compulsive Disorder and Social Anxiety Disorder in the Summer of 2020.
Reaching Crisis Point
I think of myself as quite a strong person, but I was finding it hard to cope. I found things extremely difficult as a parent of an adult child. With my son now being an adult, I struggled to know what was best for him. I was on suicide watch, but was me being there 24/7 going to push him over the edge? Did he need space? He’s being prescribed anti-depressants, but how do we know it’s the right one?
I felt there wasn’t a lot of help for me, and because Brandon is an adult, me being his carer seemed to be disregarded by professionals involved in his care. I was still trying to do a full-time job, look after Brandon, keeping in close contact with the crisis team and managing my own health conditions. I was diagnosed with IgA Nephropathy, a rare kidney disease in 2019, although I had been living with this for some time. One of the complications of this disease is chronic kidney disease and for me it means that my kidneys are rapidly losing their function. I had to give up work. I didn’t have a support network and things looked very bleak for me at that point. We had reached crisis point.
To support Brandon, I spoke to him in a way that he could understand to help him cope with his OCD and anxiety and understood the importance of getting out of bed and made sure he was eating well. At one point I had to put him in the shower to give him a wash. I felt I was missing out on having a life, which at the same time made me feel guilty. I spoke to someone from the Crisis Team helpline about how I was feeling and they signposted me to Carers First and told me how they could help.
Turning Point
When I first spoke to Carers First, I was in a really bad place and felt like caring for Brandon as well as being his mum was a lot to take on. But then everything changed.
My Carer Support Adviser, Amanda, keeps me informed with what’s going on,
including training sessions and grants and helps me with referrals to different organisations for wider support, which makes me feel more empowered. I know that she is on my side and wants the best for me. She supported me with my Carers Assessment with Essex County Council, which was a bit of a lengthy process. It’s good to talk to someone who understands and if I have any questions, I know I can contact her, and she’ll get back to me.
Now, I don’t know how my life would be without Carers First. It has added enjoyment back into my life. I can still enjoy time for me and have experienced things that I might not have done on my own. Having to accept my diagnosis of chronic kidney disease and having to give up my job was hard. Amanda, has helped me to enjoy doing the things I love and encouraged me to get involved in the local events, which I feel helped me to overcome some of the decisions I’ve had to make because I’ve had that time for me. I’ve had to be really organised with medications and start thinking about registering an emergency plan, which has leant some peace of mind.
“Having someone there just to talk to, having that person that I can speak to if I need to have some advice or have someone listen has helped me immensely as time progressed, I now feel supported, and I’ve also found out about support that has really changed my caring role for the better. Being registered with Carers First has definitely given me a sense of no longer being alone.
“I now have extra things to look forward to that help me to feel less isolated. I have accessed Carers First’s groups and events and I know that they’re there if I need them. You find that a lot of people don’t understand your life and you lose contact with friends, so it’s great to be able to speak to someone who understands and have the opportunity to meet new people in similar situations.”
Everyone’s situation is different, but we all have the same understanding of what it’s like to be a carer. It’s like moving to a new area and having to find new friends and that’s something that Carers First has allowed me to do.
Carers First has also helped me with securing some grant funding to enable me to have some quality time. I was awarded a £100 ‘Moment for Me’ grant which I spent on tickets for me and Brandon to got to a Women’s England Football game, our team our amazing! It is a shared passion of ours.
Brandon has also began attending carer events which provide great activities for him and a respite break for the both of us. Brandon was also awarded a £100 ‘Moment for Me’ grant and took me out for dinner to a lovely local restaurant for Mother’s Day, something he wouldn’t usually be able to afford. This took the pressure off us both, we didn’t rush, and just sat and had dinner, dessert, and created a lovely Mother’s Day memory for us both.
Caring for Each Other
Brandon now opens up to me and we spend hours just talking, he says this helps him and I’m pleased he can now talk to me about how he is feeling to help him explore his feelings further to try to make sense of them. Brandon is also now supporting me due to my health conditions. He helps me to do things when I am unable to. He is my practical support and I am his emotional support. We’re a wonderful team and we’d be lost without each other.
“I’m happy to support Carers First and other carers by sharing my story, I know that lots of people would be lost without Carers First and hope that more carers find out about this fantastic support.”
Brandon’s Story
I started caring for mum when she began needing support when her health started to decline.
I suffer with depression and anxiety myself so sometimes find it’s a struggle. I get anxious and stressed out and find it hard to focus on me and my life.
Caring for mum can be quite difficult, it’s a big responsibility, especially as my mum doesn’t have anyone else coming in to support her, but I feel my mum is worth it.
I found out about Carers First as Mum also cares for me and receives her own support. Having the opportunity to go to the different groups and events is a nice distraction. I’ve joined the male carers breakfast club and attended the Axe throwing event and a historical walk around Manningtree. I’d like to go to more groups and events to meet new people and even make some friends.
“Since joining Carers First I have had a lot more opportunities to do things outside of the house which has been a significant help to me both mentally and in my caring role. I know I can also call their helpline if I need it.”
Online Help and Advice
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