Hello,
I’m a new member. I’m Katie aged 35 (36 in August eek). I am a mum of two girls aged 5 and 19 months.
On the Halloween of 2023, my husband was out on his motorbike when he took ill and suffered multiple seizures. He had to be induced in a coma at the roadside and his oxygen levels were hard to stabilise. He remained in the coma for 24 hours where he was understandably confused. He had to have an operation to place a shunt after it was discovered he had a too much fluid. He spent 10 days in hospital in total.
Eighteen months on he has had a total of 14 focal seizures and one tonic clonic seizure last May. He is on anti-seizure meds which he takes twice a day. He is very forgetful, has Issues with his balance and sometimes can’t get his words out. His level of awareness has also diminished since the accident.
He was born with Hydrocephalus -also known as Water on the Brain and had to have a shunt fitted as a baby. It later stopped working but doctors thought there was little need to replace it. Years went on, he had seizures which medical professionals put down to alcohol but he stopped drinking and they were still happening. Yet, professionals still protested against replacing the shunt. He spent years going back and forth to the doctors about possible shunt malfunctions, had scans which revealed there was a high amount of pressure and still said this was fine. No need to replace it.
I do not hold the NHS responsible but the government. It is their job to make sure that the NHS is funded properly, and it is abundantly clear that it isn’t. I am angry, sad, devastated, burnt out and overwhelmed. I don’t know what to do.
Hi Katie, welcome to the forum.
My life changed in an instant when I was hit head on by a boy racer. My husband had died 3 months earlier, fortunately I was driving his Range Rover, not my Escort. The Range Rover was written off, so were my knees. I ended up with knee replacements, but I lost my vitality forever.
As a young mum, with 2 little ones, it’s extra tough.
Is your husband claiming all the benefits he’s entitled to?
Is anyone helping with the children to give you some time to yourself?
Is your husband’s bike insurer being helpful?
Hello,
I am sorry to read about how your life has changed. I am also sorry you lost your husband three months earlier. That must have been tough.
Yes, he’s receiving all he’s entitled to. My mother in law helps on the weekends with my eldest but she refuses to have our youngest too as she claims she’s clingy and cries all the time, but I don’t see it myself. She spends most of her weekends away with her partner in the Summer. Most of my family are abusive and toxic. I have teenage siblings but they are busy with their education. I have looked into a babysitter or childminder but I am not sure what help we would need and how often and the times etc.
My husband’s insurance wasn’t a problem, so that’s one less thing to worry about.
My eldest starts school again this week thank goodness. How old are your children?
I’m 73 now, sons 48 and 46, grandson 12 years old, now as tall as me! My eldest split up with his partner and lives with me, I have a cottage in the New Forest with a large garden. He looks after the garden etc. otherwise I’d have to sell it, which would lead to a lot of homeless old machinery. A steam roller and traction engine live here too!
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@Phoenixwings35 you must be exhausted, have you carers to come in an support you? Adult Social Services should be able to offer some advice, or Citizen’s Advice is really helpful.
Can’t believe your mother-in-law but families are all different. A regular child-minder would be good to help you get a break from all the pressure.
Sending hugs
@bowlingbun That sounds lovely!
@Tiredanne No, we don’t have anyone coming in to support us. He doesn’t want the help, keeps telling me he’s not an invalid and that he’s nowhere near as bad as I think he is 
. Men eh? He’s a stubborn so and so. I tried to have the conversation about maybe calling Adult Social Services to see if they could provide help but it just lead to the same old rhetoric from him.
Yes, mother in law is unbelievable. It’s ok to say.
No luck in finding a childminder as of yet. All local ones have no space.
Sending hugs back.
Ask Social Services about childminding, as you are a carer.
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