End of life care and support

FormerMember over 5 years ago

2 replies
37 subscribers
1599 views

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

MelanieL over 5 years ago

Dear Hazel,

I am so sorry to hear about this very difficult situation. And I can understand how worried this must be for you.

My first instinct would be: Can you not go home with him for a while? But I am sure you have your own life and work in Australia and can't just leave for a while. But wouldn't that be so wonderful?

What I would recommend is that you get in touch with End Of Life Doula UK or Living Well Dying Well. Those two organisations provide End Of Life Doulas. An End Of Life Doula is a person who will accompany your dad on this journey, and who will connect him with the relevant public health nurses who may come to visit regularly or once a day or however often needed, they know how to get a carer should that become necessary, they are able to make an advanced care plan for zour dead and a living will and will.

They are really the best to turn to I think because they know these situations so well.

I myself am from Ireland but I am training as a Doula at the moment and I have to say that I am amazed at the concept and it feels like for somebody like your dad, with so many questions, it sounds like the perfect thing to do.

What did the oncologist offer in terms of treatment options? Are there any more treatment options available, even palliative Chemo? Are you his next of kin? If so, then perhaps you could speak with his oncologist as well to make sure you understand exactly what his plan is or if he has any.

What are your dad's wishes? Does he want to return home? Or would he prefer staying with you in Australia? And if so, I wonder is there anything you could do to arrange this? Is there a way you could state that he is too sick to travel - even though this may stricktly speaking not true - and keep your dad with you? What does he want?

Sorry lots to think about in my post...

I hope some of it helps.

Love, Mel.

I don't like the term "moving on" because it sounds to me like we are leaving our loved ones and the life we had with them behind. I like the term "moving forward" as it implies that, while life goes on, our loved ones are still with us in our hearts and minds.

LoobyLou49 over 5 years ago

Hi , Your first port of call must be your dad's GP and his specialist nurse. I'd advise calling them right away. Ask your dad's GP to refer him to his local hospice; you can't contact them until he has been referred, but once he has they can provide support in the home, from hospital beds to nursing, and/or he could go into the hospice for round the clock end of life care. Don't delay or he might be too ill to travel, it already sounds as though he is closer to needing medical help than might have been suggested.

Secondly, call the helpline, 0808 808 0000 for a chat with one of our experts who can help with further advice.

Thinking of you,

LoobyLou
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End of life care and support