By Collette, Care Coordinator & Carer Support worker
I have been working with J-J and Alex for five and a half years as their Carer Support worker. When I started, the boys were just teenagers and now they are grown men aged 24 and 22 years. Although I no longer support J-J, Alex still requires care support.
J-J and Alex are diagnosed with Fragile x Syndrome, Autism and ADHD. The boys live with their father Nick, their main carer. Nick is 52, recently retired from the Police and until recently had plans to renovate the family home.
Due to the children’s disabilities, when I visit to care for Alex, it gives Nick time to catch up on chores in the home, including paperwork, linking with healthcare professionals, the boys’ college, as well as arranging sporting activity for the boys.
Both lads are very active. They play a lot of sport, but primarily football which they adore. The family are regular supporters of their local football team Woking Wolves, a club Nick started, coaches and is now patron. The club helps families who have children with disability. It is a mixed team, J-J and Alex regularly play football tournaments and are quite active. J-J also attends the gym and goes to boxing classes.
Both boys are avid Chelsea football fans and regularly go to see them play home and away. As I am a Liverpool fan, this makes for interesting banter between us, especially when either Chelsea or Liverpool have a bad day. This season, with Liverpool on course to win the league for the first time in more than 30 years, I think I’ve had the upper hand.
For the last year, I’ve only been caring for Alex. We spend most of our time watching and chatting about football. I help Alex with his college work, we work on spellings and I support him with life skills, for example handling money or how to cook a meal. Over the years, I have tried to get Alex to be more social and independent but, this has not been so successful. Alex is deeply shy. He hates having to talk to people when in a shop, he doesn’t cope well because he does not have enough self- confidence to speak with someone he does not know. Although, he has absolutely no problem talking to me as we’ve developed our friendship over time. He does have off days like everyone, and occasionally he’ll not speak and will just play games on his phone. I know this is okay because he’s happy in my company.
Last year, both boys passed their driving test which is one of the reasons I have stopped caring for J-J. At 24 years, he is more independent and goes out regularly, which is great! Alex also passed his driving test but he doesn’t like to drive. He won’t tell me why and I don’t push him on this, because just passing his test was an amazing achievement – I take great pleasure in reminding him of this.
Sadly though, in recent weeks Nick injured his knee while he was doing household renovations. Because of social distancing restrictions during Coronavirus, he had to have a video consultation with a consultant who said he urgently needed knee surgery. Because of Coronavirus, he would have to wait for an operation. Two weeks later, Nick was rushed to hospital as an emergency. He had sepsis and nearly lost his leg.
48 hours following his operation, Nick was sent home on a drip. Vulnerable and at-risk to Coronavirus following major surgery, he was told to self-isolate. With no access to online shopping, I was able to help with some shopping for them. When I arrived with the shopping, having not seen the boys for some time due to social distancing restrictions, I noticed how anxious they appeared. They were so worried about Coronavirus they did not want to come out of the house to unload the shopping from my car; Alex was clearly shaken and upset about his father being unwell.
Nick has since been back into hospital to undergo his knee surgery. He is now home but still very unwell and in pain. I will continue to help and support the family during Coronavirus with shopping and prescription medication collections. The shopping support has been a godsend for the family.
J-J and Alex have now grown into independent young men, caring for their father. It’s been an absolute pleasure to see these two young boys, transition into adulthood.
I love my job. Lending a hand for a few short hours each week for people like J-J, Alex and Nick mean people who care, can take a break for a few short hours and have time for themselves; which they need for their own health and wellbeing. With respect to J-J, Alex & Nick – the picture tells a story, I am making a difference.
If you would like to help more carers like Nick, supporting loved ones with care needs who are vulnerable or at-risk in our community right now. Please give towards our Coronavirus Appeal.