Care in the Community 2

In my opinion, it is not possible to care for someone, even someone that you love, continuously 24/7 without any breaks. It is important to look after yourself, so that you can look after others. I saw that with Mum when she was caring for Dad with vascular dementia at home. She was being stoic and did not complain ever, but once he became immobile and required feeding and changing it was a demanding caring role for anyone, let alone a lady in her 70s. Finally she accepted that she needed some breaks and so early on he would go to daycare provisions, which varied in their quality, and like us, she was responsible for getting him there and picking him up. Once he was house-bound, she used the services of an agency to help with getting him up in the morning and putting him to bed, as well as occasional sitting during the day to allow her out. She also had an invaluable pool of friends and family – my mother in law, sister and Dad’s cousin mostly – who would come to the house to be there, while Mum would go to her pilates class, go to church or make a doctors appointment. The trouble was that when family came to visit, she wanted to spend time with us, not to go out and leave us in charge. Just twice after his diagnosis that I can recall, did Mum have a mini-break with her sisters: Early on Dad came to stay at our house for a few days, while she went to Scotland and latterly, I stayed over with him at their house, while they went to the Lake District. But it was always a struggle to encourage her to go anywhere, feeling that Dad was her sole responsibility but we were all happy to help out and she would come back from her break, no matter how short, more relaxed and refreshed, having had some time for herself.

But I understand her reluctance, I really do. We know that caring is a demanding role and so we do not want to burden others with the same job that we do, day in day out. I know that any carer will be as sleep deprived as I am and I do not wish them to suffer that. We know that it is our responsibility. For me it is easier to use professional respite than to ask friends or family to have Joshua. In my mind, that is their job, they exist to provide respite services and they are paid to undertake that care. It will inevitably be more institutionalised, but I think that Joshua can cope with that as he has had years of practice, starting with the residence that he attended on the site of his first special school when he was about 8/9 years old. He clearly loved it at the residence and it was the main reason that we were reluctant to leave the school that was not right for him.

We are still waiting for Joshua’s current respite provision to be able to offer him some overnight stays, as the last one he had was in February 2020. They are still struggling to recruit staff and so have not yet been able to book any overnight stays in, although it is sounding more promising from the manager’s last email. In the meantime, my best friend has very kindly offered to have him to stay with her and her family once a month until the professional respite is resolved. Joshua stayed once in April and another night in May and we already have plans for how we will use our ‘time off’ in June. I have always felt as though she was kindly doing us a huge favour, but she assures me that they all enjoy having him to stay as they have a good laugh together, even though last time ended with seizures and a dose of Midazolam, which was less fun. I have already booked in his July stay on a date that enables us to go and see a concert that I have booked tickets for. So that one night a month is a real treat for us all – Joshua loves the change of scene and new audience for his antics, we enjoy the freedom to do activities that are more difficult with him in tow and my friend has fun doing a good deed.

So I watched Mum reluctantly accept assistance in her care of Dad and I am trying to learn from what I witnessed. I too need to be refreshed by a break, so that I can give caring my all once he returns. I like this thought-provoking quotation from Rosalyn Carter about the ubiquitous nature of caring :

“There are only 4 types of people in the world: Those who have been caregivers. Those who are currently care givers. Those who will be caregivers and those who will need a caregiver’

Given this fact, we need to respect and care for our unpaid family carers more in our own communities, to acknowledge the value of the tireless, and often thankless, work that they do.

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