Carer stories

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Below you will find various stories written by Carers of service users who access our services, as well as stories from our Parent/Carer Peer Support Workers. 

After the difficult year of 2020, the impact of COVID-19 and lockdowns has put our health and wellbeing to the test. Whether you worked throughout or were at home looking after those you care for, the lack of socialisation and connection has had impact on us all, including myself.

However, now that life is getting back on track and we can enjoy coffee with friends or that weekly trip out, it’s important that we all take care of ourselves, now more than ever.

For most of us, our 'wellbeing' has been a common theme we’ve heard again and again throughout the lockdowns; however what does 'wellbeing' really mean? The term is generally used to describe a holistic view of health, although the definition according to the Oxford-English dictionary is ‘the state of being comfortable, healthy or happy.’ The idea is that good levels of wellbeing can help us feel motivated, engaged and feel that life is more balanced. This helps us with resilience and our ability to bounce back from daily challenges.

Taking good care of ourselves helps us not only to perform to the best of our ability but also ensures that we are better able to support those we care for. In my role as parent/carer peer support worker, I have lived experience of being a carer to a loved one with mental health difficulties, so I know this first-hand. My role in LPFT now involves supporting parents and carers in our CAMHS service and a huge part of this is reminding carers that their wellbeing is important too.

I hear many stories from carers about their caring role, but the words from one carer recently really stuck with me, resonating with my own experiences and affirming the value of supporting parent/carers’ emotional wellbeing.

Whilst speaking about their caring role they also talked about what was important to them in their role. They discussed what they saw as the three most important aspects of self-care:

Being Heard - having the opportunity to talk and be heard, really heard, was a priority. For someone to say ‘I hear you, and I’m here for you’.

Connection - connecting, sharing with others within the boundaries of a safe space, empathising and validating.

Spirituality - being spiritually connected, not necessarily through religion but having connection to the universe and love and access to continuous love and support.

They spoke about what gave them strength during the more difficult experiences of their caring role, using the analogy of a ‘batman suit’ to describe the value of protecting and looking after yourself as a carer to help ensure yourself from becoming ill, and therefore unable to support that person/loved one.

After, I reflected on these words. I, as a parent/carer, too wanted to make everything better for my loved one at that difficult time. I remember feeling completely helpless and became consumed with it. I wasn’t eating or sleeping properly and I was waking up in the night feeling overwhelmed and sick with worry. It affected me hugely.

Becoming so overwhelmed, did that help them? Did my lack of self-care make the situation any easier? On reflection, no it didn’t. Maybe looking after my own wellbeing more and having someone to listen, really listen, would have really helped me at a time I really needed it. That is why I love what I do. Listening to other parents/carers in that same situation, showing them we don’t always get it right but learning from our experiences and working through our journey together, giving us all hope for the future.

Below you will find links to additional information and resources that you may find useful.

Check out the 5 steps to wellbeing on the NHS website

Lincolnshire Recovery College

Lincolnshire Carers

Lincolnshire Parent Carer Forum

– By Julie Graves, CAMHS Parent/Carer Peer Support Worker

I can’t tell you how long ago it was that I was asked if I wanted to join the Carers Council. When you’re a carer, the days seem to merge into one another and time seems to lose much of its meaning, but I do remember wondering what exactly the Carers Council was and whether there would be any real benefits to being a part of it.

In my experience, most committees or groups involve lots of talking with very little to show for all the hot air but I knew that was a generalisation and the opposite can also be true so I thought about it some more.

My husband was diagnosed with Young Onset Dementia in December 2017 and it wasn’t a pleasant experience. In the aftermath of the diagnosis there was no support and for a very long time we struggled through, picking up information as and when I discovered it. I decided that being involved in something like this might help other people avoid what happened to us and I also thought it might give me something to occupy my brain, which wouldn’t be a bad thing.

"I said ‘yes’ then and prepared for the first Zoom meeting with no expectations whatsoever but thought, if nothing else, I’d meet new people and find out new information. 

So what can I tell you about the council? Is it somewhere people go to talk but not achieve? Is it something that meets for the sake of meeting and ticking boxes? I’m happy to tell you it’s neither of those things.

We meet once a month and have the dates of those meetings up to and including June 2022 so we can plan and try to keep diaries free. Information is sent out at least a week before each meeting, an agenda is set and stuck to, guests are invited to talk to us about relevant services, our views are taken into account and, most importantly, any decisions taken at the meeting are acted on before the next time we get together. 

In the months I’ve been a member of the council we’ve produced leaflets of our own, we’ve had input into information given out by services, we’ve given our opinion on existing services and I really feel we’ve made a difference to the experience of service users and carers. I’ve also learned that I’m not the only carer in the world, that there are others living a very similar life to mine.

One of things that’s really stood out for me is the way the meetings themselves have changed in response to the needs of the carers involved. Until very recently we met from 3pm to 4.30pm once a month, but frequently there were only two or three carers taking part. Then came a request for an evening meeting so we tried it and discovered that far more carers could be involved if we held the meetings in an evening, so they were set for 6pm to 7.30pm each month. At the first of these there was a discussion around how difficult it was for us to be ready so early and the immediate response was to change the times. The plan now is to meet 6.30pm to 7.30pm. The meetings will be shorter but the council will be far more accessible and give many more of us the opportunity to make a difference.

- Written by a Carer involved in the Carers Council 

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