By Regan Kelly.
“There is no break, it is constant work, having to care for someone who doesn’t fully understand what is really going on”,
-Charlene: A full-time Carer for her younger Brother Gerard
Charlene is a mother of two in her early 30s, who cares for her brother at their Childhood home since their Mother passed away in 2013. Gerard has Microsephelcy and Autism and needs constant care. A kind man, although Lockdown is something that he cannot “fathom”.
For Carers like Charlene, Coronavirus restrictions can have a strenuous effect. She says that “Gerard is a man of routine” so when Lockdown initially hit, it was devastating for him and made him a lot more “agitated”. Before restrictions came in, Gerard was out and about quite often. He would attend a Specialist centre throughout the week, almost like a school. He would also be taken away for a few days every month or two for an overnight stay with another carer. These are things that are part of his life and what has always made him happy.
“He was frustrated and didn’t want to do what he was told. We tried everything to keep him active and brought him out an about as much as possible, but sometimes he just did not want to participate, and would refuse to move from where we were”
Respite Care can mean many different things. Most importantly though, it is a chance for home/live-in carers to receive a much-needed break. Unlike in the past, Respite Care doesn’t necessarily mean having to move your loved one to a specialised care facility. It can really take the form of any sort of a break for those permanent carers. This can be as small as an hour away from the house. Although it can also extend to an overnight stay or even a holiday. These give carers some much needed time to relax and switch off.
According to Mobilise UK, Everyone providing care should be entitled to some form of a break by Law, especially if it is to their loved ones. Although unfortunately, in the Covid world these necessities have either been disrupted or in the worst cases, cancelled.
In the UK, the new Coronavirus Act has enabled Local authorities to cut the amount of care that they already provide for elderly and disabled people, down to an absolute minimum.
In Charlene’s case: Gerard’s discomfort with an upheaval in his routine eventually got to her. “We had no break from each other at all, so it was both hard mentally and emotionally for both of us and there were times where you would feel like crumbling because of the pressure”.
As time progressed it seemed to get harder for both Gerard and Charlene and the pressure was “never-ending”. As there was no gradual decline in Gerard’s respite care and since it was taken from them so abruptly, Charlene felt like she was “thrown in the deep end”.
These Days off for Charlene are “needed”. Apart from having time for herself, this is when she can perform casual tasks. Like attending appointments and doing her shopping. She cannot do these things with Gerard as “If He doesn’t want to do something or go somewhere then he won’t”.
Being a carer is a full-time job. In any other full-time job, we are not required to work all day every day and are clearly entitled to days off. Why should this not be the same for Carers? At the end of the day, caring for our carers should be deemed essential.
Thankfully, Mobilise UK, are an online support group for unpaid Carers in the UK and currently have an online “Cuppa” regularly. Where they discuss stories like Charlene’s, discussing different aspects of caring during Lockdowns. They provide many different supports including online meet-ups, Podcasts and even Blogs. You can find out more about Mobilise at https://www.mobiliseonline.co.uk/.