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Give unpaid carers the credit they deserve: Deb’s story

It is difficult to define when I first became a carer,

My husband was first diagnosed with Multiple Sclerosis (MS) shortly before we met 28 years ago. My caring role has changed over the years, it started with little jobs like helping him put on his shoes and socks, making sure he got enough rest, and making sure he was eating properly.

Today my caring role though out the day includes: helping him to roll over in bed to a sitting position so that he can use a bottle to urinate. This can be in the middle of the night or just first thing. I empty and clean the bottle,  and help him to get back into bed unless he is ready to get up. If this is the case, I help him have a wash and moisturise his skin to stop dry patches. On a good day he can manage to get dressed. If it’s a bad day, I have to help him.

My son then helps him stand to transfer to the wheelchair, and he goes to the bathroom. Most days he can manage to brush his teeth and use the toilet by himself, but there are times when he can’t manage. On shower days he needs help getting ready to get in the shower. I or my son help him to transfer to the shower chair, I help him to wash hair and body, rinse off and dry. And then moisturise and dress. After this, I help him transfer back to the wheelchair. He uses the stair lift and transfers to a second wheelchair at the bottom. I put his slippers and jumper on him and help him brush his hair. And when needed, I trim his moustache and clip his nails. And even cut his hair.

I then make sure he has his tablets ( I am responsible for managing repeat prescriptions) and that he has a drink to take them, I prepare his breakfast, as I do every meal, and try to make sure that it is in mouthful size bites or something that can be eaten with a spoon.

He then plays on the PC or we watch TV together, spending time together. The daily routine continues until he needs to go to the bathroom or is ready to go to bed. Sometimes he needs help with this, sometimes I can go up first and leave him to get to bed. I often have to wake up quickly to help him out, sometimes with a t-shirt stuck on his head, if he’s having trouble getting his feet into bed, or he can’t cover himself up. The worst times are when he has had a fall and needs help getting up.

I am also responsible for making sure wheelchairs and equipment are in safe working order. I make sure that there is nothing to trip on, we have loo rolls, soap and toothpaste, that there are clean clothes, towels and bedding, And that there is enough food in the house including the occasional treat. I pay the bills, keep an eye on the finances and make sure there is emergency cash for speedy taxis to doctors or the hospital. All of this whilst keeping everyone happy!

I think one of my biggest challenges is having to wait to see if he can manage things himself, that, and smiling in the middle of the night.

My highs and lows? When we just look at each other and laugh, because if we didn’t we’d cry. When I so want to shout at him, and very rarely do. Then he catches my eye and says ‘sorry’, then laughs at me. Humour has defused many a bad situation. When we get to bedtime after a bad day and fight over who has the most quilt, things that normal couples do – because so much of our relationship is no longer normal. We don’t go to the pub or to see a band. I have health issues, which make it difficult for me to help him in and out of taxis or to push a wheelchair, so we rarely go out alone.

I get a huge amount of support from my grown-up sons who live with us, both practically and emotionally. And from my daughter too, who is still is Swindon. Her and her fella do a lot of running around for us, especially during self-isolation. Under normal circumstances I allow myself a week away in the summer to visit friends by the sea, leaving to boys to cope the best they can. They do a brilliant job at keeping my husband safe and looked after. Sometimes the house looks like a war zone when I return, but it is a small price to pay for weeks unbroken sleep and some much needed space. I have some brilliant support from friends – some of whom I have met through Swindon Carers Centre. They pick me up and take me out to lunch or a quick coffee.

We have been in self isolation since February because we don’t think that MS and Covid-19 are a good mix. I have found it difficult to keep going without trips out, and going to activities that Swindon Carers Centre puts on. A Friday sing or a craft afternoon can mean so much more than the actual activity. It means having contact outside of the house, having a chance to share and offload if you need too.

I have found comfort in phone calls from friends and Swindon Carers Centre, as well as doorstep visits from my daughter and friends. I have found meeting online hard at times. Sometimes it is more depressing when you don’t know when you’ll meet in person again. So I gave up for a while. I have gone back to singing with the carers on zoom, it is lovely to see everyone again and share a song and a laugh. I have my singing lesson online, which helps boost my confidence and makes me feel special.

I find it difficult to ask for support because I can’t see what anyone can do. I get lost in the role of being there for someone else, and feel I lose who I am in all the tasks. I like to sing, and belong to a small group of 12 women who sing and usually meet once a week to practice. We also sing at events around town and at choir festivals. I like to knit and read and do colouring in. I enjoy putting pen to paper and seeing where that leads me, sometimes a story or a poem, sometimes a letter.

I think unpaid carers are not given the credit they deserve. We get overlooked because we do many things without complaining. It can be a hard place where you feel very alone at times. I struggle with self-esteem and wonder sometimes if I do enough in my caring role. Then I feel that it is all too much to cope with, that I didn’t sign up for this, this wasn’t the life we were supposed to have. And then I feel guilty because I am not the one who can no longer walk, or get out of bed, or cut up my food.

One of my complaints about carers allowance is that I don’t benefit from it at all, because it is taken from my husband’s income support. Why do I do it? Because I care, because I love him. I hate to see him suffer, sometimes I hate the MS, but I love him dearly.