The merry-go-round you can’t get off: Life as a parent carer
A personal reflection by Heather Adamson, Carer Support Worker, drawing on both lived experience and the struggles shared by parent carers she has supported.
When your child experiences mental health challenges, it creates a pull like no other. You have nurtured, loved and supported your child to the best of your abilities, and when things change and it becomes apparent that they are on a different path from their peers, it effectively shatters any expectations you had for them to lead a ‘normal’ life.
You try to hold onto hope but find yourself on a merry-go-round that you can’t get off. Little sparks of light and ‘good days’ keep you going, but in the pit of your stomach you are waiting for the next downward spiral. With enduring mental illness, it can feel like a never-ending battle against overwhelm. You’re trying to seek help and trying to get others – family, friends and professionals – to see what you see: that your child is not behaving this way because they want to. They need help, compassion, love and support.
The hope that you hold for them to find and foster relationships, friendships, seek employment and create a fulfilling ‘life’ slowly gives way to a process akin to grief. Grief for what you wished and hoped for them, and seeing those of a similar age build a life for themselves, pulls you into a sadness like no other. It becomes increasingly difficult to relate to others and their families. They do not understand, nor would you want them to.
When people ask how your family is, you keep answers simple and hope that no further questions will come… maybe something like, “Oh, they’ve had a few difficult spells, but they are doing OK.” It hurts too much to try to explain it all, and, honestly, unless you have walked this path, it is so very difficult to comprehend. You are trying to shield your child from judgement and protect them as best as you can, painfully aware of how difficult their life is already.
Social media has created another fear. Will your child be laid bare in a ten-second video on social media for people to make assumptions about?
life as a lifelong parent carer
As a parent, you try to protect all of your children, but what happens when one of them is significantly unwell? I try to keep the worst of what is going on from my other children, which adds another layer of guilt and shame to the whole situation.
My biggest fear is what happens when I am no longer here. Who will look out for them? How will they cope? Who will have their very best interests at heart?
You begin to look towards a different set of celebrations, shifting your thinking away from ‘typical’ milestones. Cheering on the small wins quietly, daring to hope that this might be the start of a new chapter.
Heather Adamson
Carer Support Worker, Fife
Hindsight can become a torturous process.
It is often like walking a tightrope – trying to keep the balance of ‘being there’, advocating, supporting, loving – but conscious that your relationship is at the mercy of illness. You’re trying to keep it going, being allowed to be a part of their life so that you continue to be ‘let in’ to do all of the above.
Appointments can be particularly difficult. My child freezes in these situations. I try to hold back to see if they can answer questions and share what is going on for them. It never works out that way, though, and I end up filling in the blanks, fearing I am being judged as a controlling parent. I’m hoping and praying that the professional can see the stress this is causing my child and act accordingly.
hope, grief and the long view of caring
It is an awful, helpless feeling to sit and watch your child crumble, knowing that there is nothing you can do in that moment to take away their fear.
It is a very difficult thing to accept that I am now in a ‘caring role’. I am just mum and that is what mums do. However, I realise that my normal day-to-day does not look like most others. Accepting that perhaps I need some support was tough to take. I should be able to manage this.
Having a child who experiences mental illness has created a lot of fear for the future, but also given me the drive to keep going, keep pushing for all that they need and keep myself going for as long as possible.
support
If you are a parent caring for an adult child with mental health challenges, support is available.
Our Carer Support services can offer emotional support, practical advice, advocacy and help with navigating health and social care systems. The National Advice and Support Service can provide information on carers’ rights, benefits and signposting to support across Scotland.
At Change Mental Health, we know that unpaid carers play a crucial role in supporting people with mental illness in Scotland, often at significant personal cost. While there is data on carers overall, we currently have no clear data on the number of parents who are lifelong carers to their adult children – leaving an important group largely invisible.
This lack of visibility matters. Without it, the emotional, practical and long-term impact of lifelong caring risks being overlooked in policy, services and support planning.
If you are a lifelong parent carer, your story matters. By sharing your experiences, the impact of your caring role and what you need to be supported, you can help shape understanding, influence change and ensure lifelong carers are no longer invisible.
