With everything that has happened in the last few months regarding Jack’s transport issues, and the behaviour of the agencies involved in trying to sort the mess out, I felt it was time that I wrote about being a “Carer” as well as a mum, and what this means.
As I have explained over the last few posts, I am in a situation of trying to get either Continuing Healthcare, Social Services, or Transport Planning to provide an escort to help Jack to school. No one will claim responsibility for funding this venture in any shape way or form. As a result from the end of this term (2 weeks away), Jack will not have an escort to take him to school from september as school have exercised their right to withdraw the escort they were providing. It was never their responsibility, and they merely provided one to “help out” until someone did what they are paid to do and HELPED JACK!
I don’t see how this situation is going to be rectified now before september. All communication from the various agencies seemed to have ceased totally. Jack’s school are asking me if I have heard anything. And I occasionally ask them. The last news I heard was that the school doctor had accessed Jack again and was writing to Continuing Healthcare giving his opinion on their outcome of Jack’s fits being deemed as manageable and “responsive to current protocol”. But I have also heard that said doctor is completely snowed under with paperwork, and I do know that End of Life plans that I drew up with him last year have still not been circulated. The result is that if Jack were to become terminally ill, none of the plans I have put in place would be enforced. Jack’s life would end quite possibly in a side room on A&E, and not at home or at Rainbows as we wish.
Matthews school were contacted again this morning regarding a key fob so that I could use the school car park there (by Transport Planning this time), Jack would be safe and secure, and I would be able to do all school runs myself, and there would be no need for anyone to have to do their job as I would be doing it for them (she says in angry sarcasm). They once again have fobbed us off with the “possibility” that a fob could be provided from september IF they feel there is sufficient space in the car park. Now we have our WAV, this would be the most stress-less option all round. I would be able to do the school runs, taking Matty and Hannah first and then Jack, but without access to that car park, it cannot be done.
Now I know you already know all of this. I am repeating myself once again. But part of being a carer, is repeating yourself again and again and again. Over and over the same old shit, either to different professionals because there seems to be absolutely no continuity of care in any department, or because I am trying so hard to sort out the problems that are thrown my way, as Jacks carer, day after day, month after month, year in and year out.
Does the Government really think that we need all of this hassle? We look after Jack better than anyone could. We love him, we give him his medication, we monitor him 24 hours a day (with no help), we feed him, we time the seizures that cause him to stop breathing, we administer oxygen and diazepam rectally if need be to ease his suffering. We monitor what goes into his body (and what comes out). We change incontinence pads, we administer suppositories, we mop up vomit from when he refluxes his food and drink. We change his bed in the middle of the night if he has wet it – sometimes more than once. We comfort our other children, and try to reassure them if Jack has a seizure with them around – although they are very good about it. And we laugh and play like any other “normal family”
What reward do we get for all the extra things we do. Yes I claim Carers Allowance – a pittance for what we do. I don’t work, as the amount of time I spend dealing with Jack’s seizures etc, would mean I would have to have the most amazingly understanding boss!
The government keep making noises about introducing “new deals” for carers. Such as allowing us a personal budget to organise our loved ones respite stays….giving us freedom of choice they say! I also received a book through the post announcing that I would be able to go on a course to give me a break from caring! Yippee I thought. Then I read the brochure. I can’t remember the exact courses on offer, but there was something about potting plants, coping with stress, nothing that would boost my non-existent qualifications and enable me to be able to get at least some sort of non menial job when Jack is no longer here….not that I am envisioning any sort of life then anyway….I can’t imagine life without him. There was nothing in that brochure that boost my self-esteem, self respect, or to let me see myself as anything other that “just a carer”. Nobody seems to get it.
I once had a conversation with a person who asked me what I did for a living. From what I recall she was an assistant in an accountancy office. I told her I was a Carer.
“Oh, what you really mean is you’re a slacker” she cackled.
I have to admit I took offence, and in the months following I did have my revenge for what she said – nothing that needs to be discussed here and now, (and I do have to add I am in no way proud of myself) but I hope that she might be a little less smug than what she was back then.
I have been to my GP before, as at times being a carer does bear a heavy weight. All they do is offer antidepressants when really all I have ever needed is some form of support – emotionally really with a spot of practical thrown in. You announce that to the GP and they tell you to take the tablets…and then in a few months they will wean you off them and put you on a very long waiting list for “counselling”. In the three times that I have been in this position, I have never once been given the counselling. I have just basically been told to “keep taking the tablets” and in a few months we will see. I end up weaning myself off the tablets every single time, because I don’t like how they make me feel – I don’t feel myself when I am on them….almost numb emotionally…which is not what I want to be. I just want some support to help me in caring for my beautiful son…and indeed for the rest of my family. But unless I count learning how to pot plants as help, I guess I’m not going to get it.
