“it’s about adjusting to what becomes your new norm”- Carers Week 2021, Joe's Story

 

Carers Week 2021- Make caring visible and valued

 

7-13 June is Carers week and here at Solent, we want to recognise the incredible hard work undertaken by unpaid carers, acknowledging the positives, as well as the challenges they face every single day.

This Carer’s Week, we wanted to recognise the role of carers within our organisation by creating an open and safe space for them to tell their stories. Through a series of blogs, we hope to make the role of caring more visible and highlight their immense value to society. For some the role of caring can begin suddenly and bring with it many obstacles to overcome. This carers week is an opportunity to continue the conversation about the positives about caring, as well as the challenges the role may bring.

For our second blog of the week, Joe Croombs, Community Engagement and Experience Manager at Solent NHS Trust talks about her role as a carer.

Joe explains: “The key thing for me was that my husband and I didn't really see ourselves as carers at all; we're just parents. Our 20-year-old son, who is autistic, high functioning and suffers from mental health problems. He is also transgender and suffers with selective mutism, so there’s quite a lot of complexity going on. He's very aware, even if he can't quite work out at the time, why sometimes things aren't quite right. I also have a long-term condition, so in a way, at times, my husband is also a carer for me, because there are things that I can't do, that he helps me with.”

“There's all these things that, as parents, you think about with a new baby when you go out, you think about ‘have they got a highchair?’, ‘have they got a changing mat?’, etc. However, he's now an adult, we still have to think of lots of things. Can we make reasonable adjustments to support him? Can we ensure that he has somewhere safe to say anything and be comfortable? So it is that thing around understanding when to step in and when not to. So we try to enable him to have freedom.”

“It's really interesting, before the pandemic, it was being hinted that we were Carers. If I'm honest, we sort of shied away from that title. I think because his condition had developed and his needs had increased over a period of time, we have become accustomed to the things we needed to do. He's nonverbal, so if we went out, myself or my husband would talk for him and he would explain to us what he needed.”

“We're linked with Dogs for Autism, which is a charity that supplies assistance dogs for adults and children with autism. My son is getting a German Shepherd called Star, who will be joining us hopefully August/September time. It's amazing to see the change in him when the dog’s there. For us, who are not dog people, all of a sudden, we've also now got another potential dependent coming into our house. However, we've been fostering a dog partly to get us used to having a dog and also because I’m the charities volunteer coordinator. They needed a Springer Spaniel looking after for a little bit and in the end, I did not want him to go back. He was awesome, and I think I've actually got quite attached to him, as like my comfort blanket. He would sit here just looking up at me and he'd be my little buddy. However, overall, it is about adjusting to what becomes your new norm.”

“We never thought we would have a child because I was told I couldn't have children. So, when we found that we were pregnant it was amazing. And then when he was born, everything was fantastic, and he had a relatively normal childhood. It wasn't really until he went to high school, that things started to show, and he started to withdraw. I am a nurse, however then went into management, following an injury, which I have continued to do full-time. My husband has a full-time job, he was flying here, there and everywhere. So, all of a sudden, our way of living had to change. We are here in Hampshire and my family's in Manchester. We don't have that infrastructure from my husband’s side as they're all quite dispersed. So, our infrastructure is our friends.”

“I think lockdown has helped a lot, in some ways, because it played to my son’s strengths. He doesn't like going out. As my husband and I were at home all the time, we have been able to support him maintaining a routine. However, he was very anxious because he knew if I got COVID then I would possibly end up in hospital due to my respiratory condition. So it's been a bit of a double edged sword”

“I think COVID pushed me to identify myself as a carer, and that was predominantly, if I'm honest, a paperwork exercise. If we weren’t registered as carers and he suddenly went into hospital, we wouldn’t be allowed in. Our son would really struggle if my husband or I weren’t there.”

“Our son had a crisis before Christmas and the crisis team contacted us to ask if we were okay. This was the first time in eight years, we've been asked about us. And I happened to be in my tranquillity garden in the back garden and I burst into tears. She asked if I was okay and I said, 'I'm crying because it’s just the first time we've ever been asked about how my husband and I are'.”

“I know that I am incredibly lucky, I have got the most amazing husband. When I'm bit down, he’s up. When he is down, I tend to be up. So, we really seem to balance each other out and we talk about everything. We also both have two incredibly good friends that know everything, and we can talk to them about anything. They would pick up during a conversation that there's something wrong.”

“I think my husband would say the same if you spoke to him; we would not know what to do without each other. Actually, that's what makes us so much stronger because we're able to bounce off each other. So, it’s the unity of our approach, whenever we're doing anything, it's always together. So, we plan and execute as a team; because we are much stronger together.”

 

If you or anyone you know is affected by this story, please reach out for support through Carers UK for help and advice.