Palliative care only for my husband

First stop is your GP. They have a lot of influence and can get things done. Second is contact macmillan. You should be getting home care offered, unfortunately its often the case that you have to chase it up but they can put all sorts of help in place for you if you need it. . If he has a life limiting illness he is also entitled to PIP. Macmillan will sort this for you. Partners are often overlooked and its a shame that we have to reach out for the help, but reach out you must. Once they know you need support they will be so helpful. xxx

Thanks for your kind words. Luckily Pip is in place. His gp surgery have been truly appaling beyond belief which doesnt help but will persevere. Got to keep trying. Todays not a good day, but ho hum.

HI

a belated warm welcome to the online community. So sorry to hear about all that you are going through.

My husband (53) is under palliative care for a stage 4 brain tumour so I can empathise with a lot of what you have said.

As Crystalwitch has already said, please reach out to your GP and your husband's GP (assuming they are different) and perhaps even ask for a referral to your local hospice. I can only speak from experience of our GP and local hospice but they have been so supportive over the past 4 months. The GP linked us in with the community nurses who call once a week to check things are ok. They would visit if we needed it but my husband doesn't want that at present. The local hospice offer community care and their advanced nurse practitioner calls once a week and visits every few weeks.  I hope you can get a support network in place.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.

love n hugs

Wee Me xx

Totally agree with what you are saying about the hospice, they are so wonderful. My partner died 8 weeks ago and the hospice are still giving me amazing after care, they offer me bereavement therapy and complimentary therapies too. x

I can only say thank you for taking the time to reach out. It sounds as if you are facing very big challenges as a couple too.

Things are sadly becoming worse. Trying to liaise with hospice, really confusing mixed messages from his consultant, palliative care nurse etc. He was sent a copy of a letter this week from consultant to gp. It frightened me to the core with the picture it painted.

ive got a genetic disease. It has no treatment or cure and its progressive. Just pain relief for me. I feel so selfish but when hes no longer here i will be alone in a 2nd floor inaccessible flat. He leaves no money or security. This wk ive also found out i need urgent attention for some gynae issues im having.

Have no support from family or friends, nothing. All just a bit much, way too much. My hearing loss overwhelms me.

Thanks for your kinds words, they were heartfelt and resounded greatly.

Thank you x