Covid and the Carer

We’ve all had Covid. Olli caught it on his return to University. Andy contracted it from a visit to our local Accident & Emergency department. Samuel and I caught it from Andy and Joshua caught it from a member of his household.

My main fear throughout this pandemic has been that Joshua would catch the virus. The diligence and care of Joshua’s staff has been reassuring and his brush with the virus was asymptomatic. My fears have eased. 

I am not sure how we would have coped if the pandemic had arrived 10 years ago; our story would be a completely different one. What follows lacks humorous anecdotes and is difficult for me to write. However, I feel it’s important as it highlights some of the additional challenges a parent of a severely disabled child will have faced throughout the 2020/21 pandemic. 

A child with Angelman’s Syndrome has severe to profound learning difficulties. They are non-verbal and usually have significant sleep disturbances. Many have epilepsy. All need 24 hour care and supervision. Some are fully mobile, others not. Despite the severity of developmental delay, they comprehend and enjoy much of the world around them. ‘No flies on him’ has been a phrase often used to describe Joshy. Individuals with Angelmans are people lovers, thriving most when at the centre of attention. Intentional in their relationships, they are determined to initiate friendship with everyone they meet. They have a great sense of humour, a winning smile and draw people into their lives. Josh is typical of his Syndrome; funny and cheeky with an infectious sense of humour. 

As a parent of a child like Josh there are many rewards; too many to mention. There are also many challenges. As time progresses and your child gets older, it can be harder to notice the laughter and the love because parenting has become tough and tiring. It’s difficult to see the rewards when you’re overwhelmed.

At age 13, Josh had begun to exhibit extremely challenging behaviour. This put tremendous pressure on our family as he would hit and hurt anyone whom he perceived to threaten his relationship with me. My younger boys were bitten and their hair was pulled. We were increasingly unable to predict Josh’s behaviour both at home and away. Our family life was extremely stressful and help from social services was limited and had to be fought for. As Josh grew in size, he was able to upturn a table or throw a chair. His physical aggression hurt more and occurred on an almost daily basis. We were constantly strategizing; managing and limiting the triggers that seemed to aggravate his behaviour was exhausting both mentally and emotionally. 

I’ve reflected on numerous occasions how unsustainable life would have been if the pandemic had happened at this stage of our lives. What would lockdown have looked like in our home? If we hadn’t been able to take Josh out when he was younger we would have seen even more deterioration in his behaviour. School and respite were a lifeline for us. What would it have been like if these were cut off? How would I have managed to home-school two children whilst providing Josh with the 24 hour care and supervision that he needed? As I’ve read the comments of parents on disability forums and listened to their struggle, anguish and stress, I know that I would have been experiencing much the same if Josh had been younger when Covid came.

Throughout this pandemic, thousands of families like ours are facing untenable challenges. The absence of school and routine and a shrinking support network will have brought about a significant deterioration in the family’s wellbeing. Accessing special needs provision or hospital care has become more difficult. In the absence of places to go, attempts at keeping their child entertained at home has limited success. These parents are sleep deprived, trying to care for a child who’s life requires immeasurably more care and input than that of other children. Many children with additional needs require a team of caregivers, not just a lone parent who is having to divide time between all their children. Relationships will be breaking down. Siblings will be living under extraordinary pressure and tension. There is risk of a complete breakdown of the family unit in many homes today. 

And I am having to face none of this. I am merely outlining the life that would have been ours if coronavirus occurred in 2010. The life that belongs to so many people today. The thought of which horrifies me. 

Today my challenge is one that many face in this country: concerns for a son away at university, a business that has been forced into insolvency, a bored teenager who is having to do his A-level coursework at home. None of these are comparable to what I know others are facing; to what I would have faced at a different stage in my story. 

The one worry I have had has been lessened now that Josh has had Covid. It is not an insignificant worry. It is the ‘what if’ worry; common to all parents who have a totally vulnerable child.  ‘What if’ he gets coronavirus? ‘What if’ he becomes so ill that he’s hospitalised? ‘What if’ a trusted caregiver isn’t allowed to stay with him? ‘What if’ he is alone and frightened in hospital? ‘What if’ the hospital staff can’t understand him or fail to dignify his life? ‘What if’ they don’t fight for his recovery as much as they would for the recovery of a non-disabled person? ‘What if’ I can’t protect him, guard him, fight for him and hold him? This train of thought takes me nowhere positive. I weep as I write these words as the thought of their reality breaks my heart. It is better for me if I capture and expel such thoughts before they take hold in my mind.

I’m so grateful that we’ve all moved on and that today Josh is an extremely happy, settled and well cared for young man. I’ve not had to worry about his well-being throughout this time. He’s coped admirably and our regular FaceTime calls seem to be sufficient for him.

But to raise awareness and understanding I’ve needed to dig up our past. A pandemic has added to the already intolerable pressure that many families are living under. And who is noticing or caring for the carers?

In these days when neighbours and community seem more relevant than they did a year ago, please don’t assume that a carer is coping. I don’t know many carers who have coped. We learn to survive and find strength where we thought we had none. But coping? Does coping result in  burn-out or depression? Does coping morph into substance abuse or alcohol misuse? Does coping leave you with PTSD when the chronic crisis ends? As carers we pour out all that we have to look after and love a child who will never stop needing us. I am the mother of a lifelong toddler who is now in an adult’s body. There is no end. I will always be my child’s carer, even when others take over. When this pandemic has ended and the world has returned to ‘normal’, bear in mind the life of a carer whose world will never return to the ‘normal’ they knew before disability arrived in their life