Caring for a loved one can already feel like a full-time job, but for many people (4.87 million people across the UK) they’re managing their caring role alongside paid work. Alison from Heald Green kindly shared her story about working whilst caring for her husband, David.
Life as a carer
I care for my husband David who has Multiple Sclerosis, which is a degenerative disease of the nervous system. It affects all the nerves within the body and so affects all the human senses. We’ve been married almost 30 years and David was diagnosed in 1996. He had symptoms for a few years before then, starting around the time we got married, and looking back he had some symptoms when we first met.
I prepare all David’s meals and do all the other things around the home, which can be very tiring and lonely. Unfortunately David can’t make a cup of tea or get himself a drink anymore. He can’t make any snacks or meals or use the microwave or any kitchen appliances. This means I’ll make him a flask and leave a bottle of water for him if I go outside. I also need to prepare snacks and lunch for him for the two days when I go to work. It’s important I leave food that he can manage to eat unaided and that it’s in packaging or Tupperware he can open. Even choosing the right cup is important because he drops things all the time and so the handle, material and lid must be easy to hold, unbreakable and not too heavy to lift.
I have to help David in and out of bed because his legs are too heavy for him to lift into the bed. He needs support to get washed and I will get his clothes out and help him get dressed. David has been a wheelchair user for about 8 years now which helps him get about and he uses a frame to get in and out of the bathroom. We changed the bathroom to a wet room, including a toilet, because it’s so much easier for him. He has a perching stool to sit on for having a shave and brushing his teeth and a shower chair to get washed in the shower. He often goes to bed in the afternoons for a nap before dinner which gives me time to prepare without him feeling like I’m ignoring him.
I would definitely recommend getting Carecall support. It’s a few pounds; we stopped buying a Saturday and Sunday newspaper and that paid for the cost! You wear the button, press it if you have a fall and they come within a few hours to get you up again and can arrange an ambulance if you need one. Usually they get you back into bed or back into your chair.
The Signpost team have been so wonderful. They helped me find a wheelchair to hire from the Red Cross before we got our own. They told me about Carer’s Allowance and helped me apply. They’ve also organised great training, yoga, mental health support and days out. Generally they’ve been there for me if I’ve needed to ask a question.
Working and caring
I work two and a half days a week as a Teaching Assistant in a Stockport school. I have a great boss and I’m home by 4pm which is brilliant. If I need time off to go to the hospital or pop home if he’s had a fall, they will be understanding. I’ll always try and work back any time I miss. My head teacher is brilliant. I can talk to them about any concerns and I’m able to have honest discussions about my role.
Juggling work alongside caring is difficult. My daughter took a year out, before university, and took care of her dad so that I could continue with my part-time job. Then last year the pandemic meant I was at home and I’m currently at home again whilst school is closed. My school kindly organised work that I could do from home. They’ve really helped me to continue doing a job I love. Seeing the children and being part of the school family is very important to me. It brings me happiness and a feeling of fulfilment.
I try to come home at lunchtime, if possible, and David has the Carecall button to wear in case he falls. I leave out his food and drinks and if he’s awake then I’ll get him up and ready before I go to work. If he hasn’t slept well, then I’ll leave him with his food and drink beside the bed. He probably has one day a week where he stays in bed because he’s so tired.
I think generally my colleagues don’t understand what it’s like being a carer of a loved one. Of course we can’t expect other people to know how it is. The situation of working and caring is sad. I do feel sadness and I can feel lonely at work. Staff rooms are notoriously difficult places. Some carers say that us carers tend to be serious and have little time for frivolities. I guess that’s true. I don’t have time to watch soaps or a series on TV, and I can’t commit to watching TV regularly because my husband needs me, so I can’t join in with those conversations at work.
Another way that we carers can become isolated and excluded is from work parties, events and drinks after work. I don’t think my colleagues realise what happens if I go out and how my husband would have to manage without a cuppa or any company whilst I’m out.
Sometimes I would like someone to ask how my day is, without expecting me to say “great”. I always say it’s “very good, thank you for asking.” I don’t think anyone wants to know how you really are.
Thinking about the past and looking forward
I’ve had to make certain decisions with my career because of my caring role. I wanted to use my degree or become a teacher. About 20 years ago I left an excellent career when there was a company restructure because I was thinking ahead and wondering how I could cope with a new baby and a disabled husband. I needed to install a downstairs bathroom and we had no way to pay for it. I realised if I took the redundancy, then we could. But it’s not helpful to dwell on what might have been or what one could have done. It’s better to focus on the life one is living now.
I think the most important thing I’d suggest to other carers is to ask for help. I think I should’ve asked to work part-time much earlier than I did. When I did ask for a meeting about my hours and responsibilities, l took my husband into the meeting with me and we made a joint decision.
I think I’ll be lucky to continue working until I’m 60. I have my daughter away at university and when she comes home she takes over caring whilst I go to work. I’ve thought about changing my career but my working days might then be longer. I also wouldn’t then have the summer holidays with my daughter and I’d never have a manager as supportive as my head teacher. When our daughter graduates I might think again. I may look for a job working a couple of hours, a few days a week. The pandemic has made it difficult for everyone to find work. The future of work may be very different when we get through this.
In some ways the pandemic has made things easier as I’ve been home more. On the downside I’ve not been able to see my friends and I previously relied on seeing my friend each week to have a chat and unload how I feel. My parents live a long way away and we used to go and visit them which was always like a mini holiday. Sometimes my Dad used to come and help with my husband and that gave me a break. I even managed to take a short holiday when my Dad took over for a few days. Since the pandemic I’ve not been able to see anyone and my parents have now stopped driving and travelling because they’re getting older.
I think a positive to come from the pandemic is that more people understand how draining it can be for a disabled person to be indoors all day. More families will now understand that being cooped up together can cause tension and even a few arguments. I think people may show more understanding for disabled people who’ve been trapped indoors due to the coronavirus. I hope more families will recognise that their ‘new normal’ is ‘the’ normal for carers and their families.