Carers UK Forum

I’m new to this group. My husband is receiving end of life care at home in Gloucester. He has a junctional oesophageal/stomach tumour. He was diagnosed in November 2020. He’s had chemo and radiotherapy but the benefits of those treatments were short lived. He is going downhill rapidly now and has carers 3 times a day and occasionally at night from a local hospice at home service.

Sadly I recently had to give our dog up for adoption as I couldn’t devote enough time and energy to him. I miss him a lot but he has been adopted and as far as I know has settled down to his new family well.

Consequently I am feeling very trapped in my house only managing to pop out very occasionally when the carers are here in the morning but only for about a 20 minute walk in the fresh air.

We have been married 52 years and I’m afraid my husband is gradually withdrawing from us all and his mind is elsewhere most of the time. He sleeps a lot. He is managing to use the commode still but it is becoming increasingly tiring for him as he can’t and doesn’t want to eat. I am spending increasing amounts of time alone downstairs and I am very lonely.

Is your husband receiving NHS Continuing Healthcare - all the care he needs free of charge?
Is there a local hospice who can support you?

Yes, he is receiving care from a local hospice who come in 3 times a day and I sometimes get a career from 10 pm until 7 am. To be honest he’s quiet mostly during the night and I think it’s hard for him if he wakes up when they go in to check on him so often. The masks are rather off putting I think. We just waited over 2 weeks for an extension to his hospital bed and pump and sadly during that time he’s developed a bed sore! Just seems to add insult to injury somehow. I’m sure I’ll be glad of the night time carer soon though as things aren’t going to get easier are they?

Hi Judith,
Welcome to the forum!

I'm so sorry to hear of your situation and feeling so lonely. Please know you're not alone, we are sure that many on here will understand exactly how you feel and offer support.

Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you'd like to and there's no pressure to share anything you don't want to.

You can find information on how to register to our online meetups at the following pages:
Care for a Cuppa: https://www.carersuk.org/help-and-advic ... ne-meetups
Share and Learn: https://www.carersuk.org/help-and-advic ... e-sessions

Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email advice@carersuk.org

They also provide information and guidance to unpaid carers. This covers a range of subjects including:

Benefits and financial support
Carers' assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions


Best wishes

Lucy.

Thank you Lucy, I shall certainly consider what you’ve told me. I have a question about Carer’s Assessment - what exactly is it? Nobody except on this forum has mentioned it to me previously. I gather you get one through the Local Authority? My husband’s care is paid for by the NHS I think as he has terminal cancer.

Judith