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.