Feel cheated by the system

All about caring Young adult carers
1

My mind is going to explode.

18 months ago my little boy was born with a serious heart condition. He has been in and out of hospital his whole life, most recently having open heart surgery just 5 weeks ago. He is fed with a feeding tube and has 9 medications 4 times a day including 2 injections which myself or my partner administer.

Before he was born, I was working full time and earning a decent wage. I could put my daughter (whos nearly 3 so not of school age yet) into a nursery. I could buy new things I wanted. With my sons additional needs I had to give up work to look after him full time. My partner continues to work but as he always says ‘his money is his.’ Don’t get me wrong he pays the rent etc but day to day living me or my two children get nothing from him. If I want to take them somwhere its down to me to put fuel in the car, and to pay for things whilst we’re out. Because of this we don’t tend to go out. I feel trapped in four walls ALL the time, its just a whole host of medications and feeding tubes and its affecting my mental health.

Since quitting work, I recieve £66 per week carers allowance and £84 per week DLA. I also get child benefit. £734 in total a month. This is HALF of what I earnt whilst working, with two young children added on top. Firstly I put the gas and electric on the metre. I have pleaded with the energy company for a warm home discount for my son but they keep saying we arent eligiable.
I pay for every thing to do with my car. I pay £96 finance, I pay for fuel, I pay the tax.
I do every single grocery shop. My partner doesn’t pay a single £1 towards them. Because I find it difficult to get out of the house I then have to pay delivery for the food shop on top.
Aside from this I have my personal bills such as phone, tv license etc. I am left with next to nothing by the end. To top it off the DLA is technically not for me but for my son. I just happen to have to use it for bills unfortunately.

In my area we also get a thing called ‘flying start’ which is free childcare/education given to 2-3 year olds where they go to nursery 3 hours a day for free. Postcode lottery means we don’t get it. My daughter already misses out on so much from being in and out of hospital with us I feel like she needs nursery so I now find myself paying £80 a month for her nursery for just 2 days (whereas other children get to go for 5)

Myself and my partner have spent countless days arguing over money and how he gets to have a normal life whilst my life has totally been taken over and I’m now scrimping and struggling with my sons needs, so I went out and got a saturday job in my local softplay working 8 hours. Its minimum wage and I’m making £57 a week from that. Sounds great but by the time I’ve got fuel and done a grocery shop, its gone. There are teenagers aged 16 working there earning more money a month than I do and its very disheartening. I have a degree in English and have worked 14 years straight full time and have nothing to show.

My partner is not supportive. His attitude is your the mother, you are supposed to look after the children whilst I work. Of course I would look after my children, but I’m a mother, not a nurse and its not fair to put so much pressure on one human being. Every hour my son is due a medication or a feed. I don’t rest! I’m 29. I have friends who are still out clubbing, or going on amazing holidays. I don’t regret having children, they are my world, but the additional needs I never asked for (I feel guilty for saying it but its true.)

My son was born with a heart condition. I have to measure his saturations twice a week. If they are low we have to go to hospital. He is fed via a feeding tube as he can’t take anything orally. He has severe reflux which makes him sick a lot especially at night. The tube comes out often so I have to pass it myself. He has physio as he is behind on gross motor skills due to being bed bound in hospital. He has injections twice a day due to a blood clot he has. Reading this back makes me incredibly guilty as it seems like I am moaning about him, I love him more than words can say and as his Mum, of course I would do all of his care needs but it really is exhausting.

I have been to citizens advice twice to seek my options and there is no help other than what I already get. I have pleaded with my health visitor for some help/advice and she told me that she feels she’s out of her depth due to my sons condition as shes ‘not a nurse’ last time I saw her was 8 months ago. My son is on a whole host of medications and not once has a proffessional come out to the house to see how we are doing.

DWP sent me a letter saying my claim for DLA and carers allowance is due to end in 3 weeks time. I put in a renewel 2 months ago and when I rang they said I wouldn’t know if we have been awarded until the old one runs out. So now I’m panicking over that. If they decide to lower it or not award us I don’t know how bills will get paid.

My parents are getting fed up of me ringing them asking to borrow money to pay a bill or to put electric on. My lovely grandmother passed away last year and left me some money. I literally spent the majority of it trying to live by putting food on the table and fuel in the car. (It is essential to keep fuel in the car incase we have to go to hospital!) I’m secretly angry at my partner for standing back and letting me use her money just to live instead of forking out himself. Its not fair.

I have lost friends and family due to their lack of understanding. My son was in hospital for 4 weeks having open heart surgery and he didn’t have one single visitor. He was in hospital with an infection on Christmas day. He had no visitors. I feel so upset by this. Its my parents 40th wedding anniversary next week, my parents 60th the month after (both the same month) and my brother is getting married PLUS I am a required to go on a the hen party this year to spain. I can’t keep up with this means of living. My brother actually fell out with me and told me I was a horrible person because I mentioned I was upset with him not visiting my son. He told me I wasn’t welcome at his house any more because hes been busy planning his wedding and hes fed up of hearing about being in hospital all the time. Can you imagine how that made me feel?

Not only do I feel cheated and neglected by the system, and so called friends and family, but I also feel incredibly guilty on my son for being neglected too. I literally feel like I’m worthless.

Any words of wisdom or can anyone tell me if I’m elgiable to any other help? I don’t necessarily mean financial just help with the whole situation?

2

Your partner still has a lot of growing up to do.

3

Hi Stephanie, welcome to the forum.

My own son, now 40, was brain damaged at birth, but it was undiagnosed for a long time. I still remember how incredibly the early years were.
There is an organisation called “Contact a Family” for families with a special needs child.
I would have expected the Health Visitor to be more supportive too.

You should be getting some help and support from Social Services. Contact them asap and ask for a Needs Assessment for your son, and a Carers Assessment for you. Most of all, you need some “Me” time.

Also look up NHS Continuing Healthcare, I know some children are entitled due to the severity of need, but it can be a struggle to qualify.
Are you aware of the Family fund.

Your partner is being ridiculous. As the father of the child you should be sharing care, money, and everything else. It’s NOT YOUR FAULT, it’s not his either, so why is he punishing you like this?

4

CHC / NHS Continuing Healthcare ?

Main thread :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998

5

Your husband sounds like something out of Dickens. But you won’t change him. Ask him why he married you if not to support you and become a single family unit? What happened to for better for worse for richer for poorer?

Friends and family will drift away but you will find new ones that fit your new circumstances better. Friends made in adversity are usually truer friends. Like any change in circumstances the first couple of years will be hard and lonely as you find new friends but once you do they will probably be closer and longer lasting. I remember this from relocating. How much harder when you have two children to look after, especially when one needs extra care.

You are probably totally exhausted from all the extra work, hospital appointments et al. This is pulling you down and adding to your feeling of worthlessness. You are not worthless. You are the most important person in the world to your two children. Try to make some allowances for your family members, they are probably grief stricken too and finding being constantly supportive hard, even if they are genuinely wanting to help. They are probably also justifiably furious with your husband. Even if your husband is grieving too he still has an obligation to support his family financially. If you were divorced the CSA would force him to pay. I don’t know what happens while you are still married but I expect someone on here will know or find out for you.

Think about talking to your gp about how you are feeling. Best to nip it in the bud and get some support from him now.

Best wishes

6

I didn’t respond last night as I was so very angry at what I read. This sounds like the most unequal “partnership” ever. I don’t know of any other relationship where being the mother also includes earning every penny for the children. That is too much, and even more so with such a poorly child.
You are not, and should not be expected to be, Superwoman.
In your circumstances just getting by day to day is a big enough challenge that you cannot do alone 24/7.
If he doesn’t man up to his duties, leave him and persue him for child support.
What he is doing counts as mental and financial domestic abuse.
Your local domestic abuse service/charity may be able to support you.

(((Hugs)))

7

Domestic and financial abuse at the very least. Modern slavery, possibly.

8

Is there a special needs playgroup near you?

Parents of children without special needs just don’t understand what you are going through, but other parents with a special needs child understand completely.