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!
1 Like
@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.
1 Like
Hi
I haven’t been here for a while but I saw ‘hydrocephalus’ and thought I’d join in. After years of suffering with what they said was vestibular dysfunction, my husband finally had an MRI scan (previously deny as he has a pacemaker— this team just turned it off! Could have spared so much suffering!). Anyway, it showed normal pressure hydrocephalus and he’s waiting for another scan and finally treatment. He says he feels worse and worse every day and can’t take the pills that help his nausea until after the scan. Long story. What I said before is that he prevents me from doing things that keep me sane. Sort of. I am not coping well with this situation. I’m often in tears. We’ve just lost out beloved cat, and that hasn’t helped. I wasn’t cut out to be a carer. I’m lonely and very unhappy. And selfish I guess. He says he can’t go for daily walks in the woods any more, and to cut a long story short, I need companionship. I hope I can find it here. Thanks so much. When is the next Care for a Cuppa session? Does anyone know anything about hydrocephalus?
1 Like
Sorry, I know nothing about hydrocephalus, but a lot about being let down by the medical profession! For years I was “a bad mother”, my youngest son was very hyperactive but my eldest perfectly behaved. It took doctors outside the NHS to conclude he must have been brain damaged at birth!
What support would help you most at the moment?
@AnimalLover good morning Happy Easter, I’m sorry to I don’t know a lot about the medical condition you asked. I have just briefly looked it up. And just like bowlinghun have been let down by the medical profession. I would say alot of people on here feel like you at times lonely and unhappy and I’m sorry you feel like that .do you have any hobbies , or could you start any hobbies. A lot of people on here do crafts, knitting, cross stitch, painting, diamond art, colouring, jigsaws. To name a few and gardening. Could you do something like that to pass the time. There’s also a website called Libby. All you need is your library card number to register, and there are hundreds of magazines on there all categories and they are updated every week and you can also read back dated ones and it’s all free. You could do that an hour or so a day to pass the time. There is also audio books to listen to and books to read to. If that would help. If he cannot go for the daily walks in the woods everyday can’t you still go. The care for a cuppa I don’t know. This is the forum. You could also try the carersuk website to , all information on there. If you type in that in there search bar I would think it would come up. I hope that some of this helps.
Welcome back @AnimalLover
Goodness, how different MRI teams are! I hope he gets the next scan asap so he can restart the meds for the nausea and the treatment can start. Will he then resume his walks?
I hope you can gradually start growing a social life for yourself. Even if it’s a short half hour walk without him to start with, building up to several hours so you can meet a friend/ join a group or class etc. If you always walk at the same time it’ll become part of the household routine and you’ll probably meet the same people each day.
I’m very sorry to read about your cat. It’s very hard losing a pet. What was your cat’s name?
Info re Care for a Cuppa is here:
1 Like
Good morning! I hope I’m replying to all. I DO have activities — I’m active in my U3A; I edit our magazine, play the violin, etc. He doesn’t like it and now I’m gearing up to tell him that Easter is over. Good for me; bad for him. My main emotion is fear. It’s just the two of us — no kids, no siblings and now no cat. Fear of the future, immediate and long- term. I think the support I need is friendship and permission to vent and express myself.
My cat’s name was Suki. She’s a great loss for both of us.
2 Likes
Routine is a good idea. I don’t know why I’m so scared of telling him that I’m going somewhere but there we are. He is of course scared of the forthcoming brain operation, which is scheduled for the end of August (!
)
Here is a picture of Suki
2 Likes
Just friendship, BB, and a chance to vent. Thanks.
1 Like
Thanks. I’ll try the website.
1 Like
I’m not surprised you are both worried about the operation, I’d be more surprised if you were not. The waiting is the worst part, and i find accepting my lifelong limitations also difficult, but without surgery I’d have been dead long ago.. I get very frustrated when I can’t do things I’d done all my life until I was ill.
Is there anything you can still manage to enjoy together?
Sadly, not an option for me as I was widowed a long time ago.
I’m sorry to hear that. I’m going to try to persuade him to walk today. 
Sorry it’s been a while since I’ve been on. I haven’t felt like talking much. I’ve just been living in my head mostly which I know is not good but it happens when I’m overwhelmed which I seem to be now most days.
@bowlingbun I was sorry to read about your accident. Nearly a year on Wednesday are no further forward with finding childcare. I suggested it to him about getting in touch with social services but he is frightened in case they intervene with the kids. I think it’s because they’ve been involved in his life and now ultimately thinks it’s bad. We’re still trying to find ones suitable though through childcare websites.
@AnimalLover What a beautiful cat Suki was. I love cats. I like dogs too, but there’s just something about cats that bring me comfort. Is there anything about Hydrocephalus you’d like to know specifically? My husband has had it since he was a baby (sorry, I’m probably repeating myself here) and had a shunt fitted at birth but by the time he was seven it had stopped working and professionals were adamant he was fine without one when it is stated that Hydrocephalus is a condition that needs constant monitoring and replacement shunts as it’s though they last six years, but I know people who have went longer without needing one which is excellent. I hope your husband gets the answers he needs through the MRI. Since my husband’s accident I think he’s had more scans than he has had in his entire life with the condition. Shocking, really! But even then he has to push for them.
Nearly a year on and we are no further forward. His focal seizures are still happening every so often out of the blue. He’s waiting for a Pathway appointment which I’m not sure what it’s about. He asked for a second opinion as he wasn’t happy with the answers his neuro team were giving him. I know he’s struggling still to come to terms with how things have changed. I don’t know how to help him. I’ve suggested talking therapy but he just shrugs and says what’s the point? What’s done is done? So I’m at a complete loss. All he does is look at his phone or watch TV nowadays, and it’s sad as he used to be so active. He’s seeing a Psychologist for his memory who ruled out dementia as he was answering questions ok but when it came down to the test he struggled quite a bit and got quite frustrated that he couldn’t answer them. She thought it was to do with the environment and that he was masking. I don’t agree with that, as that’s what he’s like at home too. I think I’ve cried more these last few months than I have when he had his accident. It just feels as I’m drowning in everyday tasks, trying to keep positive and making sure the kids are looked after. That’s all I can manage at the moment.
I’m sorry I couldn’t be more positive.
@Phoenixwings35 hello, you have got a lot on it must be very overwhelming for you. About the child care have you spoke to the citizens advice bureau they are always helpful they may know places in your area. About social services. Could you go on your local councils website and see if there is anything about child minders/child care on there, they may be something I don’t know. Have you tried google and typed your area and then child minders see what comes up for where you live. I know you will probably have already done these things.i was just trying to think for you.i hope that you have had not to bad a day. Im sorry about your husbands accident.
