En of Life care & available support

Haze9229 4 years ago

1 reply

Hi everyone!

I'm looking for some advice on support available towards end of life. I have been caring for my Dad since he was diagnosed with terminal Small Cell Lung Cancer in December 2018. I live in Australia and was in the UK for a family visit when he received his diagnosis, so I stayed with him. He expressed his interest in coming to Australia with me and my partner to enjoy some family time and the warmer weather, so we flew out mid-January and he will be returning in a couple of weeks to see his oncologist.

Although he is fully coherent, still mobile, eating and drinking, he has started to deteriorate recently. Mainly, unable to eat evening meal, sleeping more, pain in his head, nausea and vomiting and very unsteady on his feet. We are assuming this is due to the cancer spreading to his brain and affecting his nervous system. He is 15 months into his 12-18 month prognosis.

Now that he is unsteady on his feet, he is concerned that his rented home is now unsuitable accommodation as the bedroom and bathroom are upstairs. As I do not live in the UK, I cannot offer him alternative accommodation in my home and we don't know what other options are available to us and the costs of these.

Any help or information would be greatly appreciated. I'm very anxious about him returning home, but due to visa restrictions, he cannot stay here indefinitely.

Thanks in anticipation,

Hazel

Clare 4 years ago

Hi Hazel,

Welcome to the community. We’re sorry to hear about your dad’s diagnosis and that he has started to deteriorate recently. It’s understandable that you are both concerned about how he will manage when he returns home. While we cannot advise we hope that we have some information that will be of help to you. 

You mention that when he returns in a couple of weeks he will be seeing his oncologist. Are you able to have a conversation with them or his oncology specialist nurse, if he has one, about your dad's concerns before he flies back?

When someone is beginning to struggle at home as well as speaking to health care professionals such as their consultant and GP, they may also want to look at contacting their local social services. The type of social care they can provide depends on someone needs. It might include things like getting help from professional carers in your home, getting equipment for your home, or being cared for in a care home. You may find our pages on how to get social care and nursing care helpful –

www.mariecurie.org.uk/help/support/terminal-illness/care-needs/social-care

www.mariecurie.org.uk/help/support/terminal-illness/care-needs/nursing-and-personal-care

While it could be unlikely they would be able to put a package of care in place before your dad returns home they will hopefully be able to give you advice and discuss how and when they can assess your dad’s care needs. If you are not certain which local authority to contact, you can search using your dad’s postcode here – www.gov.uk/apply-needs-assessment-social-services

With your dad’s concerns about the suitability of his home, if he rents from the council or a housing association then you both may want to speak about his options with them. If he is renting privately then you may wish to seek advice from his local council’s housing department.

If you would like to talk about any of this further, we are available here on the online community, via online chat  - www.mariecurie.org.uk/help/support/marie-curie-support-line/using-online-chat or over the phone on 0800 090 2309. We hope others here on the community will share their ideas and experiences with you.

Take care,

Clare – Support Line Team