Helen’s story

Becoming a carer for parents is a quiet, often unspoken turning point — a moment when the parent–child relationship shifts in ways few are prepared for. Helen’s* story shares the emotional complexity of this role reversal, from love and responsibility to exhaustion, and the loneliness that can occur with being a carer. The story reveals both the rewards and the hidden struggles of caring, and the urgent need for better support.

It’s a strange transition that’s never really spoken about. We talk about childhood into teenage years and then adulthood but I think trying to define when you became someone’s carer is quite hard. It’s a kind of unspoken moment, it’s when you realise that roles have changed and your status and relationships have become different. I thought I could pinpoint the moment I became a carer as it happened after a catastrophic incident but when I think about it, I realise that when my parents moved to live closer to me, they were already becoming quite reliant on me for help and support.

For many people, I imagine, it’s a very gradual thing, a slow realisation that actually you’re the one who is looking after them now. Sometimes this new relationship is not an easy one, it’s a role reversal which brings with it lots of frustrations and challenges. On one hand they can be quite helpless, dependent on you and very grateful for your help. On the flip side, they can sometimes be quite difficult and sometimes unpleasant. There is a such a fine line to navigate, sometimes your help is well received but sometimes it isn’t and that feels like a smack in the face!

I think one of the challenges is getting the balancing act right. You are still their child, even if they have to ask for your help. They still have cognitive ability, but just not in the way they once did. In some respects they need a lot of care, not just physically, but emotionally, mentally, and practically. There’s a lot of a lot of care they acknowledge they do need, but there’s a lot of care they feel they don’t need – and the boundary can change so it is often hard to know where the line is drawn. You have to be terribly careful to tiptoe along without crossing the line, but it’s a line that’s very easy to cross and if you do, the upset you feel as a carer is intense because you feel wounded something you did with the best intention has come back to bite you.

There are various reasons why older people can behave in a way that can be unpleasant or hurtful; pain, frustration, infection or adverse reactions to medication can sometimes cause them to behave in a way you find upsetting. At the beginning of my caring journey I was given advice about dealing with this and told that sometimes you’re going to have to think of your parents as if they’re your clients and remind yourself not to take it personally. 

Recently, I was asked to talk to someone who had carried out a project about abuse of vulnerable and older people. One of the findings was that carers are often subjected to abuse, sometimes physically, but also verbally or mentally. It’s a very tricky relationship and within that tricky relationship there is most definitely capacity for an element of abuse and it is particularly hurtful because these are people that you love. 

My lifeline is the charity “Carers Isle of Wight”, a fantastic grassroots charity that support a wide variety of carers. I receive regular phone calls to see how I am doing and they are always available to offer support and advice if needed. They have networks and support groups plus a range of activities and a wealth of information which has been invaluable to me. It’s a comfort to know someone’s there for me because caring can be a lonely experience. Don’t get me wrong, I love my parents and I would do anything to try and make their lives easier, better and nicer, but sometimes it’s really, really hard.

I have found organisations like social services, adult services and GP services to be the places where I have received the least help. I would describe my experience of dealing with them as quite a battle! Even when I have finally got through to the right person in the right team in the right organisation I have often found the waiting lists to be very long and the help very limited. There are long delays in home assessments and it is frustrating to have to battle for support to keep my parents safe and independent in their own home. I have been infuriated by the difficulty of getting simple, low cost measures put in place that will ultimately help them to avoid falls and accidents and consequently relieve pressure on the NHS and care system. 

One of the most debilitating and difficult things is the issue of mobility because it impacts every aspect of a person’s life. It’s really shocking to see how quickly mobility is lost; balance goes, core strength goes and confidence goes. My Mum will say “Oh I don’t want to go there in case I fall”. It becomes a trap because you’ve got people in situations where they’re trapped by their own fear or they’re trapped because they’ve had a lengthy hospital admission and they’re now no longer able to cope at home.

We’re very good at talking about how the population is changing but there seems to be very little being done to address some of the challenges this will bring. One of the things about caring for my parents that’s really frightened me is that I’m only 20 years behind them, that’s not very long in the scheme of things and from what I have experienced the current situation is bleak. There needs to be recognition of the challenges we will be facing and resources thrown into adult social care to keep people out of crisis in the future. That’s what government needs to do because if they put in the resources in a prevention capacity to keep us out of the acute care environment it will free up services for everybody else and ease pressure on the NHS. 

Being a carer is a 24 hours a day seven days a week commitment, you’re never off duty because your phone can go any time with any crisis. You literally have to fling everything to one side and get to where you are needed as fast as you can. It’s an emergency response potential at any given moment of the of the day or night.

I think people would describe me as a kind person, I’ve always put other people before myself. I sometimes feel a bit sad and maybe sometimes a little resentful about spending so much of this part of my life looking after elderly parents but I do it because I love them. I do it because I don’t want my loved ones to be in hospitals or care homes. I want them to lead full and independent lives for the whole of their lives. It’s rewarding and nice to feel that some time in the future, I do not know when, I will be able to look back with pride and know that I did my best for them.

* Name has been changed to protect anonymity.