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who carers for the carers

Mental Health – Who cares for the Carers?


Mental Health Carers Problems


When my daughter was diagnosed with Spina Bifida and Hydrocephalus, we were given lots and lots of leaflets to read, and told not to research the condition on the internet. Wise Words. Only now do I Google them, and laugh about how bad some of the information is about it. It would have scared me to death, a new mum with a child with ‘a condition’.

We were sign posted to charities, Disability Benefits (UK), Carers allowance (UK). Numbers to call in an emergency, as hydrocephalus can be a life threatening condition, though we don’t dwell too much on that part. Information overload. When applying for Disability Living Allowance and Disabled Facilities Grants (all in UK), I could not believe how many forms there were to fill in. I was told to fill it in as if she was having a bad day. Concentrate on the negatives. We had spent so long only concentrating on the positives, that this task became sole destroying. It made life seem so bleak.

Forms and Forms and Forms

I was never any good at filling in forms, I lose concentration so easily. Form after form after form. We were still learning how to do all of her personal care. Felt that we were dumped in at the deep end, expected to be good nurses and form filler-iners. I would never had been offered these jobs if I had actually applied for them. But when you are in this position, it’s either sink or swim. Luckily we swam, though this was not without it’s consequences. Not only were our backs suffering, (see my husband’s blog on Back Pain) but so was our mental health.

My husband, Dan, was working full time. I tried to work part time for a few years, but found it impossible to fit around all of my daughters care needs. Dan got 28 days of holiday a year. Emily had spent a lot of time in and out of hospital. Dan used up nearly all of his holiday for appointments, operations and overnight hospital stays. It was very difficult to have a proper holiday, as there were no days left. Lots of parents that we spoke to in hospital, had the same story.


We both tried very hard to get counselling. Unfortunately the government had made a lot of cuts in this area, and you had to be very lucky to get it. I was passed on to italk A counselling service done over the telephone. Before I could get this service, I had to fill in forms to assess my level of depression. Well that was depressing! Remember the reason that I was in this situation in the first place was because I had all these forms to fill in. I kept telling the counsellor over the phone, that this was my problem. I was told that she couldn’t help me until I had completed them.


After several years of this, I finally went back to my doctor, who was amazing, and I started taking antidepressants. I had tried to avoid taking them for so long, but it just got to the point that I had to take them. Once I started, I felt great. I was hoping that it would be for a short term, but I am still taking them years later, and can’t see that I will be coming off them any time soon.

Talking to a lot of my friends, who are also caring for their children, I was shocked to see just how many of them were taking the tablets. No wonder the drug companies are making a fortune. Because of the stigma attached to depression, I had no idea that so many of my friends also felt depressed, but we were all trying to hide it.

Is this fair?

Carers have such an amazing and important job to do. Mental Health is such a big issue. We are saving the NHS a fortune by caring for our children and staying in hospital with them to give them the personal care that they need. Why doesn’t anyone look out for us and help before the problems become to big to deal with?

If anyone else is going through this, look at my Support and Advice page for numbers of people who can help.


8 thoughts on “Mental Health – Who cares for the Carers?

  1. This is so well written Aimee and so on the button, I think most parents of SEN children are so hard on themselves. We have to accept there are never enough hours in the days and days in the week. Accepting we are not superhuman and for the most part we will never manage to ever comeplete lists and agendas in allotted time slots. We need to be kind to ourselves, make time for ourselves without feeling guilty and take time to speak with other Carers who understand. And finding ways to relieve stress which is par for the course is almost impossible, talking to people as much as possible is always the best solution, unfortunately this is by far the hardest as there will never be enough support for us.

    1. Thanks so much Lorraine, so nicely summed up. Yes definitely I have found sharing and talking to people helps. Just writing this blog and letting it all out, is so therapeutic.

  2. Oh yes, as the mother of 2 young people with CP, I can identify with all your stresses, esp the form filling!
    For me the stress came out in the form of a crisis in my cardiac condition. Fortunately they Dr’s were able to help me but I now take steps to improve my self care as I really can’t afford to be that ill again.

    1. Thank you for commenting. Stress just comes out and strikes you, when you least need it. I’m glad that you are on top of it now.

  3. Hi Aimee, great post. I’ve recently been receiving free counselling through the local Carers’ Centre which has been really helpful. I don’t know if that’s available everywhere, but if so, I would highly recommend it to your readers. It has helped me to feel less alone, and less overwhelmed.

    1. Thanks Mari, I never knew that was possible. I will definitely will look that up and pass that on. Great information there. Thank you

  4. Thanks for your post. This is me too.
    Our 7yo daughter has global delay, hypermobility and scoliosis, and along with all the forms for this that and the other, we are trying to get her out of mainstream school into a special school as she is struggling – it’s an ongoing admin nightmare.
    I always felt that we were just dumped with a “diagnosis” (albeit not really, but that’s another matter) and just left to get on with it and find our own way. I suffered with PND and had another bout of depression when she was five, and always feel that I am one more bad day away from needing to go back on the tablets.
    I’ve mentioned time and time again that we don’t feel supported as parents, but nothing ever comes from it. I have mentioned that I would like some form of counselling, but am met with the response of “oh, do you think that you need to join a support group?”. Remind me where I have any spare hours of the day to attend a support group, given that we have a daughter who needs constant supervision and I have a full time job?
    My husband has this month quit his job, to ensure that she has the before school and after school care that she needs, and to help her as much as he can, so money is now tight to add to the rest of the stress.
    I desperately love my daughter, but sometimes it is just too much to deal with, and no one else seems to realise it.

    1. Hi Mel, thanks for commenting. It’s sad that the same story is being repeated from families all over, and yet this side of caring isn’t addressed by the powers that be. Mari, sent a comment yesterday saying that she got free counselling through her local carers centre. I haven’t yet looked into this, but it sounds good. It doesn’t matter how much we do, it never seems enough. Though it means the whole world to our families, especially our children. Some times it is hard to cling onto that thought, especially when dealing with the rest of society. WE ARE ALL AMAZING…..REMEMBER THAT!

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