Did you know 1 in 5 of us will be a carer in our lifetime? However, do you know what it means to be a carer?
A carer is anyone, including children and adults, who look after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.
As we enter Carers Week 2021, we’ve taken the opportunity to talk to those who are carers about what it takes to do so and how it impacts their lives. We spoke with Lin who takes care of her son Steve, Avril who takes care of her parents and Clare who looks after her sister.
Who do you care for and why?
Lin: I have been a full-time carer to my son Steve, since he had a tragic accident at work four years ago, which left him with brain damage. Although cognitively he is ok, he lost movement in all four limbs.
Clare: My sister is 38 years old. She has severe learning disabilities, mild physical difficulties, and Autism.
Avril: Both my parents. Growing up my dad was the ‘traditional male’, the one to look after the household bills and general maintenance, but now he’s 74 and with several health issues, he’s not able to do all the things my mum depended on him for. So I’ve taken over, and in turn, I now support both of them.
How long do you spend caring for them?
Lin: With extensive physiotherapy, he is improving all the time, but he still needs help with every aspect of daily living, He is in a wheelchair and still has little use of his right arm, and limited use of the left, so he needs someone with him 24/7. Since coming home from the hospital, in which he spent the first 11 months there, I have been his sole carer 24 hours a day.
Clare: I care for her between 70-80 hours a week. She has a room at my house and stays with me during the week.
Avril: Roughly 1-2 hours a week.
How has it affected you?
Lin: I can say it has “drained me”. Every thought and feeling that I have are generally based around my fears and hopes for Steve and his “recovery”. We all hope that one day he will be able to live more independently, but who knows? Sometimes it’s the unknown that saps my emotions. We get on with things, day by day, on our own. I am not the sort of person to ask for help. I am very independent, but it is tiring taking on the role as a full-time carer, mentally and physically. It was my choice to take on the role, and I would never go back on that decision. I think it has helped Steve come to terms with his disability by having me there for him all the time, especially in the early days, after spending so long in hospital. We have cried together, laughed together, and managed to keep our mother/son relationship even though we were warned on numerous occasions that we could lose it if I became his sole carer. For that alone, I am very grateful.
Sometimes it is the hidden issues that can stress me more. People can see that you are caring and doing a good job, but I have had situations in the past 3 years that I have struggled with, and probably no one was even aware. I can suffer from anxiety in social situations (especially since I have been a widow). Steve has had 2 weddings to go to since his accident, both of close friends. One he was an usher and the other he was the best man. I had to attend these weddings with Steve as he needs help with eating and going to the bathroom. Both times, the thought of dressing up and going, horrified me. Thankfully, the event was much easier than the stress and sleepless nights of worry beforehand.
Clare: At times, her behaviour can be very challenging. This does have an impact on our mental health as it’s very hard to deal with. Lack of sleep due to her erratic sleep pattern adds to the mental strain. This can also affect the relationships between all family members when her behaviour is at its worst.
Avril: Mentally and emotionally; it’s sad to see my parents slowly lose their independence and sometimes I get frustrated with their inability to do simple things.
Would you say caring for them has affected your ability to do your job?
Lin: I am a qualified counsellor, and before becoming Steve`s carer I had built up a name for myself within my own business. I still have those qualifications and one day I would like to go back to helping others and their problems, but for now, I don’t have the time and Steve is my main priority. I would feel that I wouldn’t be giving my clients 100% just yet, and that wouldn’t feel right but who knows what the future will bring.
Clare: I work for myself so fit in hours around my sister.
Avril: Not really, I took time off when my dad was hospitalised with a stroke and I’ve had to move meetings when asked to take them to appointments.
Have you told your workplace? If so, who?
Avril: Not formally but my manager knows that my parents are quite dependant on me. I haven’t formally said anything because I feel it’s just a normal shift in life that after a certain age you start to look after your parents more.
What support has your workplace offered you, if any?
Avril: My manager has always been flexible if I need time off or need to move things around. She also asks about my parents in our catch-ups, especially since my dads stroke.
How have dealt with emergencies? How did your workplace respond?
Avril: I’ve had to leave work at very short notice. My parents are the oldest in our wider family unit and I have no close family nearby, so I’m their main emergency contact. As long as I update them, they are relaxed and always ask if there is anything they can do.
What support do you wish you had, especially at work?
Avril: Pre covid, I’d have said more home working or more flexibility with start and finish times, but my company have now introduced this.
How do you look after yourself when taking care of someone else?
Lin: The simple answer is, I don’t. It’s hard to think of myself when I worry about Steve all the time. His life changed forever on that day, and as his mother, this is hard to accept.
I know I have let myself go and I put Steve before everything. Maybe this isn’t always right, as I have family and friends, but it is hard to shut off from his vulnerability.
I think this will change as we start to get in some part-time help and Steve gets more and more able to do stuff for himself, then maybe I will look into my own health and well being, hopefully!
Avril: I go for walks to get perspective and talk things through with my partner and friends.
Anything to add?
Lin: Being Steve`s full-time carer has been a very rewarding experience too. I have watched him improve so much, I have been at every physiotherapy session, watching him get better and better at things, and I have learnt so many new things along the way. I have skills I never had before and I take pride in what I do.
Clare: Our only ‘support team’ are Social Services. In the last 20-30 years we have only had 2 social workers who, we feel, actually want to support us and make sure that we are ok. Our current social worker thanked us for caring and loving her. I have worked in this industry for nearly 30 years and never heard of this.
In my opinion, generally, Social Services add to your stress and can cause your mental health to suffer. During COVID-19 we had several emails from them offering support, but I wonder had we asked would we have received the help?
I know that they must budget everything. There is not enough money in the pot. Not only do they need more resources to support us, but they also need a lot more education on the mental health of carers. It is a big issue that needs a lot of understanding and support.
There are plenty of stories of mothers/fathers who have taken their lives and the life of their dependant person because of lack of support. I totally understand this. I have worked with children and adults with behavioural and physical difficulties far worse than my sister. Funding for respite for carers of children has been cut. At the end of the day, this sector needs more support.
For more information on Carers Week, head to their website.
You may also be interested in reading our blog post on ‘Understanding What Working Carers Really Want And Need‘.