"Who cares when a parent is disabled?" — Scope | Disability forum

"Who cares when a parent is disabled?"

mossycow Member Posts: 488 Pioneering

Kerami is a music teacher and a mum. Today, she talks to us about her experiences of having her daughter as a Young Carer, and how she accessed the support her family needed.

 I want to take this opportunity to highlight and thank those people in our communities who support our Young Carers. Our children (usually) and young people who love and live with those of us who need a little more help.  We need a little bit more physical help, maybe help communicating with others and we may need a little more moral and emotional support. 

 We may need more help than a little. 

 We may need a LOT more. And that's hard. 

 It's hard for us as parents knowing we put this extra need on to our children, it's hard for those around us to understand this complex relationship, and it's especially hard for those who are Young Carers. 

That’s why I want to give a BIG THANKS to the organisations who support Young Carers. These organisations can have different amounts of funding depending on where you live. There are sometimes campaigns on TV and most people have heard the term 'Young Carer' but, I for one, didn't really understand it until our daughter became one. 

smiling headshots of an adult female with an adult male on her left hand side and her younger daughter eating an apple on her right 

Our daughter is 10 and is happy for me to name her. Emily gradually became a young carer as I, her Mum, gradually became more disabled. When we had Emily I was less disabled and I expected to give her brothers and sisters, to take care of her physical needs and certainly didn't plan on being in need of her care....  

 Can you hear the guilt coming out as I type? This guilt, this profound guilt at needing the help of my own child was the first thing that delayed us from accessing support sooner. I have found it difficult to label her as such. I've watched many TV reports of young carers and never felt anything but admiration for other families... But when it became me, I guess it became very real. I worried so much that either Young Carers supporters would judge me as a bad mother, or worse, as not looking after Emily well enough.... every parent’s fear. I worried that if I invited the professionals supporting Young Carers into my messy chaotic house, they would contact social services. I know now that these were the anxious thoughts of a Mum struggling to come to terms with everything. I know now that those who help Young Carers do not judge families, but can become a source of support and strength. 

The first call with Young Carers was pretty much me spilling out all my fears and worries for Emily and I also didn't give my name until I felt I was able to trust them. Please also know I was getting used to lots of strong medications so this probably didn't help! But they understood this, and they understood well everything. They knew we had things out of our control, that some days I was on medication or ill and certainly not as able to keep a tidy house. But that that didn't affect our love and care of Emily. 

From their first visit they put us at ease. We chatted about our family situation and my disability, sometimes without Emily, often with her and sometimes without us so Emily could speak freely. Because despite all my fears, the reason I reached out was because I saw a campaign on TV. It talked about children doing physical things for their parents and I wondered if I was 'disabled enough' to deserve support. But then it talked about Young Carers needing EMOTIONAL SUPPORT and that really made me think... 

 I thought about the times Emily had woke hearing me sob uncontrollably at the loss I have suffered. The crying on the phone after hours of calls to benefit offices, her cuddling me when I lost my job and her waking in the night when an ambulance had been needed... She has us to talk to and her fab extended family and school. But she doesn't talk to them. She tells them she is fine and that Mummy is fine and everything is fine, fine, fine…

 Young Carers have taught Emily to talk about her feelings. Going on trips to fun places with staff has meant she has channels of private communication she can use to support her. She has ways to deal with her own emotions, and it has helped us deal with difficult times and celebrate better times. Also on these trips are other children who share their roles as young carers. They understand! I remember this time last year, Emily came home from a trip and said she told her fellow young carer that Mummy had a new wheelchair that was electric and this friend knew exactly HOW exciting this was for Emily and our family. She just understood. 

 Being with other young carers is as important as staff support to develop Emily's confidence and in helping her relax away from those who ask awkward questions. It also gives Emily a chance to relax away from her caring and she gets to go to places where we can't take her because of the wheelchair. This is also 'guaranteed Emily time' as often I am ill in the school holidays. It is a day off that Emily knows is not going to be spoilt by me being disabled which sounds awful but is a reality. 

 I am so proud of our little Young Carer. The first thing our Young Carer lady said to our family when she came to visit was that children who care are often those who grow up with confidence, independence, skills such as washing, cooking, empathy and she is right! Perhaps I would have encouraged Emily to do more around the house and help even if I were more able bodied? Who knows. But there are times when Dad's at work where we really look after each other. Like last week when (with supervision) she made us baked spuds, tuna and veg for tea as I was having a very sore day. 

So perhaps you are reading this and wondering if your family need support. I encourage you to Google 'young carers near me' or perhaps use the Carers Trust. Whether a child is a young carer or not isn't black and white. You can call and chat to someone about it, have someone to your house to meet you all, it's your choice as to how much or how little support you need at each point. Funding is stretched, and not all places in the UK have the same organisations and support in place, but wherever you live there will be something and whoever you are, you deserve support. 

 What do you think of Kerami’s story? Share your thoughts in the comments below!


  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    I do understand how much of a burden we can be on our children and have always told mine I would rather not be. That I would just like their company as much as possible. Unfortunately this has led to me hardly ever seeing them for anything.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • mossycow
    mossycow Member Posts: 488 Pioneering
    Are your children older @Topkitten (great name!)?

    I wonder what a it will be like when Emily is older and will seeing mum = doing stuff for her rather than enjoying being together. 

    Mind you... I'm reckoning on her also feeling like seeing mum = getting help herself too. 

    Must be hard not seeing them as much  happens so much now. 
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    My girls are 33 and 35 and my boy is 22.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,382 Disability Gamechanger
    I just want to say a huge thank you to you and @Sam_Scope for your open and frank posts about young carers. 

    There is a huge amount of ignorance on this topic and I get angry at some of the comments, which I don't intend to repeat here, I have read elsewhere when this topic comes up. Young carers I have come across are amazing people deserving all the support they can get, both in school and out of school. They are also among the best self disciplined young people I have met.

    What I would say to you though, is as a society we are quick to point the finger at parents when kids go bad, look at how wonderful your daughter is and accept while your child has to deal with issues and responsibilities other children don't have and you may not be able to do as much for your child as you want you are still a great mum and this is reflected in Emily.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • mossycow
    mossycow Member Posts: 488 Pioneering
    That's really lovely thanks.

    We had an awesome day yesterday. Emily on her bike and me on my power chair bombing it down into town. Had a lovely day just having fun together while Dad on a course. 

    Felt like real progress as wouldn't have managed this a year ago, Dad probably wouldn't have been able to do the course. 

    I needed a little help.... A few doors... Getting winter layers on and off... But otherwise felt good to treat her to lunch and laugh together. 

  • [Deleted User]
    [Deleted User] Posts: 127 Courageous
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  • mossycow
    mossycow Member Posts: 488 Pioneering
    Oh that's so hard. Can't believe how cruel kids can be but sounds like you have an amazing relationship that you can talk and support each other.

    Do you mind me asking /suggesting, about young carers support? And support from school? Because I was so determined to be independent and 'a good mum' I didn't want to ask for help as I worried they'd think I wasn't able to do my job and take her away... But when we finally did get help... It really really helped! 

     Because we found when Emily was having trouble at school with friends and was bullied by a chap saying very similar things (ypur mums going to die, she's just a fat lump I'm a chair etc) she delayed in telling us. School have been fantastic and she no longer had these problems. And her sessions with her Young Carers support worker has helped her to know what to do if stuff like that does happen. Also, having someone that isn't me tell her that everyone has health problems and that hospital is a place where helps people and that Mummy is really well etc... Has helped too.

    Is he 8 now then? How is he doing now? 

    I have  a friend who was hospital for months after a stroke and her little girl found it difficult to bond with her again afterwards. But! She is doing so much better now and things are getting back to (a new) normal.