Lucy is a carer for her adult daughter who has mental health issues. In this article, Lucy shares her experiences of being a carer alongside working and participating in the Carers Manchester Lived Experience Panel. Her name has been changed for anonymity.
I am a carer of an adult daughter who has a number of severe and enduring mental health issues. I have been her carer for over 20 years now and she has been in and out of services and hospitals during that time.
I am a single parent and the sole carer for her. My caring role is chaotic, stressful and demanding and has taken a massive toll on my mental and physical health. It has also impacted my ability to work and limited my career prospects over the last 20 years.
Getting a job doesn’t mean stopping being a carer, or stopping caring
Over 10 years ago I went along to a support group run by a mental health carers charity. I found that to be a great source of help. I started volunteering for them which I really enjoyed. It gave me a sense of purpose and achievement and really helped my self-esteem, which at the time was very low. After a year or so, I was offered a part-time paid role as a carer support worker.
I struggled with this decision initially as it felt like a big step for me. I remember becoming upset after I had accepted the job. I felt guilty for moving on with my life, while my daughter was still stuck, very unhappy and really unwell. I didn’t feel that I could be happy unless she was happy, or until her condition was improving.
But it was becoming clear that whether I put my own life on hold while supporting my daughter, or whether I tried to improve my own situation – it didn’t make much of a difference to her illness and difficulties. Whatever I did, her illness stayed the same. I found out slowly that by helping myself, I was in fact helping her. I think my renewed positivity did have an impact on her mood, whether she would like to admit that or not!
Meaningful and flexible work
I was able to work part time alongside caring, as my employer was very understanding and flexible. When unpredictable issues, appointments, or crises arose – which they did very often – I knew that I could take the time off and catch up with the work at my convenience. I know not all jobs and employers can operate like that, but carers now have more rights in the workplace. Hopefully this will make it easier to carry out both roles, if carers want to do that.
The job included helping to support other mental health carers. I found that by having a similar caring experience myself, this really encouraged carers to open up and talk about their difficulties. Sometimes they did so for the first time. It gave me self confidence in my abilities and a feeling that I was doing something really important and worthwhile. Not that caring alone is not important and worthwhile, it is, and it’s very important to say that.
But what can be quite common with some carers, mental health carers in particular, is that we are often not valued or appreciated by the person we are caring for. Carers can often be emotionally manipulated in their role and accused of being part of the problem. For example, that we are co-conspiring with services to get them hospitalised, when really, we are just trying to help them. This can add to a carer’s already very high stress levels, low self-worth and sense that they’re failing the cared for.
Losing my job
Unfortunately, our charity lost its funding so we closed down and I was made redundant last year. That has been quite stressful for me as I have lost my income and I am now out of work again. Around the same time, my daughter was being discharged from her latest hospital admission. She was coming out still very unwell, with no care package and no support, except for me.
I knew I couldn’t look for another job at that time as she would need a lot of support and input from me. It didn’t take long for the stress, lack of routine and constant crises to start to wear me down again. My anxiety, depression and insomnia were back and my self-esteem and motivation to do anything else was very low.
Finding out about the Lived Experience Panel
I receive the Carers Manchester fortnightly newsletter. It is a great resource about the latest support and information in Manchester. There was an advert in there to join their carers Lived Experience Panel. The description of this panel was that it “provides a space for carers to have a voice and share power with professionals, so that their expertise is used to shape services which impact carers and to help make positive change for carers in Manchester.”
I was very interested and applied to join. They have monthly meetings both in person and online. There are opportunities to get involved with other projects too. To date I have been involved in the initial working group, helping to set up the Lived Experience panel, and also their carers break strategy.
Being listened to and valued
I have found being on this panel very enjoyable and rewarding. I really feel that I am valued and my views and ideas are listened to. This is very important for carers, as often the opposite is true and we don’t feel listened to by some services. The Carers Manchester staff are extremely friendly and welcoming. They do their utmost to make it as convenient for you to be involved as possible. For example, you don’t have to attend each meeting and you can fit the work around your caring role. You can pick and choose how much involvement you would like. Panel members have also been invited into Carers Manchester strategy meetings and are given the space and time to raise and discuss any points they want to make. I am really positive and hopeful about services for carers going forward.
I really look forward to the meetings and discussions. It has given me a sense of purpose, structure and achievement again, which I lost when losing my job last year. It is also good to have that connection again with the other carers on the panel so I don’t feel so isolated. Also having this work experience will benefit my job prospects, if and when I look for employment again.
So, I encourage any carer who is interested in the Lived Experience Panel to sign up! Your wealth of knowledge and experience is very valuable. Oh, and they pay you for your time too, which is an added bonus!
