Hi often look at the post but haven’t really posted yet.
3 weeks into lock down my husband had a massive decline. Think we are now definitely in late/ end stages.
I really want what’s best for him I never knew a journey could be so hard.
Feels like everyone around us has written him off.
I imagined I would keep going till the end with Nursing care towards the end but people around me think I’m crazy. Is it possible?? Does nursing care exist? Has anyone done this? The words palliative care haven’t been said yet but it feels like they’re avoiding it I obviously want to do whats best for him but feel like IGP etc just expects me to shove him in a nursing home (job done) which would break both our heart’s!!
We have choices nowadays about end of life and there should be extra support available for you and your husband.
You should have the choice nowadays, home or hospice and the extra support should be provided.
Your doctor doesn’t sound at all helpful and not sympathetic to your issues.
I don’t know if your husband has been in hospital but most hospitals have a chaplaincy service, a chaplin on call, you can go in have a chat, you don’t have to be religious or anything but they will be experienced and be able to advice and help you out.
Or if its cancer Macmillan nurses, my cancer unit have a big wall of leaflets, end of life help and support.
Someone should be able to help you out, The Hospital PALS team-Patient Liason, worth a ring they might be able advise.
So try these above, many other members of the forum have been through it and can help and advice.
Bless you Sue, my heart goes out to you ,I’m caring for my very disabled husband he had a massive stroke last year and what your going through is constantly on my mind my biggest fear, keep strong love, this forum’s brilliant, plenty of good advice and lovely people, also the carers helpline are amazing
Sue, look at HS Continuing Healthcare Framework and go through the checklist, and look at the Fact Track section. Yes, it can provide care at home. Look at the Poynton (Pointon?) case which was subject of a Panorama programme some years ago.
Oh Sue my heart is breaking for you and your husband! it’s not right that people have to scrabble around for information, help and advice at such a sad time. Take care.x
Thank you for all your replies!!
The worst has happened he ended up at A&E then point blank refused to allow me to go with him whilst they transferred him to another hospital by the time i was allowed to see him they had already give up on him laid him flat on a bed and allowed him to choke on his own vomit the hospital told me he had Asphyration pneumonia Which shocked me because I thought he’d been sent there for a suspected bleed because he bowels were impacted The hospital had took one look at him and decided without any test or discussion that the would leave him to choke flat on his back and let him die like a lump of lard alone I refused to move and eventually they gave me a side room and I sat and nursed him all night in the morning his swallowing was a lot better 5 days on he’s sat up in bed talking laughing and eating apparently never even had pneumonia just constipation how is this even ethical moral or legal??? Now I have the heart brake of knowing their actions will have an impact on the quality of life going forward when will we be listened to why are dementia patients just written off these people are loved have sons daughter brothers nieces etc…