Desperate

[laineyash]

at my lowest point now, my lovely Hubby is in hospital with a chest infection, kidney infection, UTI and fluid all over his tummy and lower legs, he's been on intravenous AB's and seems a little better, we were put in a corridor in A&E for 5 hours on a trolley until the ambulance crews helped us to get him a cubicle so he could be changed (bladder incontinent) all told, we were in A&E for 19 hours before a bed was found for him on the Acute Medical Unit, we have been trying to find him a long term care home placement as I'm now totally exhausted and trying to deal with my cancer, even the carers who come in 4 times a day are struggling with him as he's now totally off his feet, I suppose what I'm trying to ask is what stage is he at but not getting any answers from the medical people xx

[Yanno]

Hello Laine. I'm so sorry but I don't have any answers for you I'm just putting a hand out to you in support hoping that someone will be able to give you some answers to your questions. Of course, every journey with MSA is different and so I suspect there will be no clear response for you. Have you spoken to your local hospice and to your MSA Trust specialist nurse? Thinking of you, Ian

[laineyash in reply to Yanno]

I will speak to the MSA nurse Yanno as I can't seem to get the proper support we now need on this awful journey thank you for your reply xx

[Hidden]

I'm so sorry. It sounds really hardgoing. The hospitals near us have cancer support centres where people can go for someone to listen and take the strain. I'm hoping your one might and you could take a short break from helping your hubby to chat to them. There is an overview of MSA stages in the documents for GPs on the MSA Trust website. But from reading this forum it does really seem difficult to predict how long someone has, if that's part of your worry. I will go and light a candle for you now.

Love Kx

[laineyash in reply to Hidden]

thank you Kay, we have a Maggie's cancer centre local to us and I've only managed to go in there once and it did help a little, I will try and find the documents you mentioned as the hospital and GP don't seem to understand the severity of his condition and the pressure it puts on me trying to look after him at home, thank you xx

[Madauntie]

I'm sosorry for you Laine I have no answers but can empathise with you. Hugs to you and your hubby. God Bless Iris x

[Kiwimagic]

How awful for you both.

Is there no hospice close by?

Have you got a Macmillan nurse assigned to you both?

Have you got a district nurse?

I’m sending you a virtual hug and will keep you in my prayers x

[laineyash in reply to Kiwimagic]

No District Nurse Kiwi, we have a hospice close by but I've been told it's virtually impossible to get him in there, I have a MacMillan nurse I can ring, just can't seem to get the right support for us both xx

[Paul_and_Sue_Wood]

Laine,

Sorry to hear of your challenges.

Like everyone says no one knows when the end will come and all we can do for anyone is be there and healthy ourselves.

Concentrate on yourself for a while if you can and maybe chat to cancer nurse specialists for yourself, or Macmillan?

I hope you can get all the support for your husband that you can, but I don't think you can do any more other than be there.

Good luck and we are hear for you.

Paul

[tingates]

Elaine, hello. I am so sorry to hear about how things are. You really do need the support of the hospice. I have said this several times before and unfortunately need to say it again. Speak to your GP and your MSA nurse and community nurses and hopefully community matron. It is time to throw all toys out of your pram all at once. Those guarding thd gates of hospices often only understand them in the context of pain. Insist that your husband sees a palliative care consultant, ie at the hospice. I doubt a hospital is the right place for your husband to be. If you can get him in a bed in a hospice, that will open all the doors to further care, including how much further intervention is appropriate. They will also be able to help getting residential nursing care or 24 hour care at home. Put aside a morning, call as many people as you can and do not worry if you.' Loose it'

Very Best Wishes and good luck.

Amanda

[Startreckersdaughter]

So sorry to hear this news my dad is also in hospital he went in to have a pubic catheter put in but had relation to Anaesthetic now he has a bad infection on the lung. it was a hard decision to put my dad in a nursing home but I was better all round for him and me and my mum there are some lovely homes out there it’s worth looking at a few . No one ever tells u what stage they are at and it’s hard but u do have to think of yourself as u can’t help him if u are off your feet to home u find him a good one like my dads and the pressure starts to lift a bit for u