feeling very alone with poorly husband :(

[pipsqueakz]

Hi all, I don't really know what to say but the title says it all. My husband suffers with a condition called gastroparesis very debilitating disease paralysis of the stomach. He's very I'll ATM and on diazapam to almost sedate him at home. Its very upsetting to see him this way. I suppose I need some hand holding support. I font know sorry to go on. I know its not just me in this kind of situation but feel if I cry I won't be able to stop :(

[AndIFeedEmGunpowder]

How horrible for you both. I'm so sorry you feel alone. It must be really frightening.

Don't have any experience of this but am here and holding your hand.

[pipsqueakz]

Thank you. I'm very worried about him. The kids are so worried too. Very frustrating unpredictable time atm.

[AndIFeedEmGunpowder]

Is your DH getting treatment apart from the diazepam? Are your kids little or grown-up? It sounds like you are being really brave. x

[happyreindeer]

So sorry you are going though this. very unmumsnet {hugs}

[YoniMatopoeia]

How horrid and worrying for you.

Is he getting other treatment?

[pipsqueakz]

Not really he is under a consultant who is 130moles away who doesnt know what yo do with him. Which gives us even less confidence. He's on around 35 tablets a day for his condition had a gastrostomy. Cannot work due to his illness neither can I as am his primary carer... well only carer. We have three young dcs. Am really flat atm god dealt us a bad card it feels.

[AndIFeedEmGunpowder]

It all sounds ghastly. I hope things turn a corner for you soon x

[sudointellectual]

[hugs]

You may already know all these resources, but just in case: carers trust will have a centre near you and Crossroads may cover your area check here.

You are legally entitled to a Carer's Assessment from Adult Social Services and don't underestimate the help you could get through this route. Don't avoid them because you don't want the social involved they're nothing to do with the child services and there's no transferable stigma. They do things like help you with care cover so you can go and have some time alone. Anyway, if you call them and say you need an assessment they will send someone out eventually--. You can get a carer's assessment even if your DH has been assessed and denied social care.

It might be useless but sometimes they really come through with the thing that stops you breaking.

Make sure your GP has you registered as a carer in your notes and at the surgery - they will help you out with things like delivering premade dossette boxes for your DH. Make sure you are getting Carer's Allowance or if you're not eligible then get the Carer's Credit to secure your stamp.

These are all sort of hard nosed and practical considerations, I'm sorry. But just in case you didn't know these things I would hate for you to miss out. (If you do know all this then sorry - I know it can get very annoying being "signposted" to stuff you've already done.)

[hugs!] It's hard.

[pipsqueakz]

Thanks AndI its not pleasant but muddled through so far. Can't get any worse surely!
Thanks happy reindeer
I will take your ideas sudointellectual thanks I wasn't sure where to go for help. I'm in the dark about support etc. Thank you all for your time x

[twentyten]

You poor thngs.Brilliant advice from sudo-please take it.there is support out there.Good luck.

[pipsqueakz]

I hope so haven't had much luck so far. Its horrible seeing him suffer if I could give him my stomach I would do it at an instant. Its such a rare complex disease. I wouldn't wish it on my worst enemy! Not a lot of medical ppl know much about it and those that do are miles away and you have to fit a certain criteria to be referred its all numbers budgets and tick box systems. Its so frustrating there needs to be more awareness.

[sudointellectual]

I just noticed you had posted again. I wanted to say that it is very difficult getting on the right track with rare diseases, but provision and pathways in the health service to get you there do exist! After all, each rare disease is in itself rare, but it's not rare to HAVE a rare disease. 1 in 17 people have a rare disease at some point in their life. But you're not wrong that it's harder than with more common care pathways.

I suggest, if you can, get in touch with www.raredisease.org.uk/ who may be able to give you some tips on navigating the system. Rare disease services as a group are commissioned by "NHS Specialised Services", and your GP can get advice and guidance from them on what more can be done to support and treat your husband. Really the support should be coming from your GP, who should be signposting you all to support services and advocating for you in the wider system. If he/she is not doing that, seriously consider changing doctors. (Our lives were transformed when we changed to a GP who actually did her job. There's just no comparison.)

Also, you sound like you should qualify for help with travel costs. Your GP should have the HC5 form. It never covers everything but it will help a lot. NHS Travel Costs

[pipsqueakz]

Thank you I will take a look at the link when have five minutes