To try and get my Dad back to the UK so he can die here

[Ataloss23]

I am looking for a bit of support with this, as I don't really know where to start!

My Dad lives in the USA, born in Scotland but moved over in 2019 when he married his wife who he met whilst traveling over there.

18 months ago he was diagnosed with stage 4 pancreatic cancer. He tolerated treatment well, and we have been lucky to get more time with him.

He decided he wanted to move back to Scotland, so he could live out his days here. He sought advice from lawyers and they began the immigration process for his wife, which has been long winded. She has paid all of her fees, including NHS fees and had her embassy interview 9 weeks ago. We have been told it takes up to 12 weeks to get a response.

His treatment over the past few months hasn't gone as well as it has been, and he has taken a real decline this week. I've ended up flying over to America to be with him as we don't know how much time he has left. We are discussing hospice options, and he has said that he would much rather find a way to get back to Scotland, because he still wants to die back home. So I am trying to do everything I can to get him home, but would really appreciate some guidance.

His Dr here has said that he may be able to discharge him for flying, if he feels he would be able to manage the whole flight and we can manage his pain. My concern is how quickly could we access services in the UK? We live quite rurally, so not the same issues for getting access to GP as people in larger populated areas experience. I'm more concerned about how we would access District Nurses, pain relief, stuff like that rather than home support/hospice/care home, as we will be providing his care at home and should manage it all between us.

And regarding the Immigration process - his wife is unable to travel to the UK while immigration clearance is ongoing. Is there a way to expedite this to get him home this week does anyone think? As much as he wants to be here to die, he doesn't want to be here without her. I have plans to phone Immigration in the morning from over here to see what we can do, as I feel this is the biggest challenge we are going to face.

I know this isn't a very common situation, but does anyone have anything similar that they could share with me, or have any professional insight regarding accessing District Nurses or Immigration?

I'm also trying to suss out what services we will need to get him home - private ambulance from the hospital to my house, a hospital bed (can I even get one of these in the house if I don't have access to OTs? Pain management in the community etc. Is there anything else I haven' considered that I need to look into?

I know we are probably chasing something that isn't possible, but I want to make sure I'm doing everything I can to meet his wishes.

Any thoughts or advice would be great please!

Apparently the doctor said he was fit to fly- that could change rapidly though. No update from OP yet. She must be in turmoil with all these conflicting posts.

Yes but she has already applied for a different visa and you can't come on a tourist visa while this application is under way

Please dont tell me what my truth is

Mother was admitted on a Tuesday, spent the next 2 nights in A&E - luckily she got a bed and not a trolley , then transferred to Antrim on the Thursday . She took a heart attack on the Saturday and transferred then to a mixed medical ward where she was monitored for 4 days. That was when I was given the diagnoses and I asked about what care was available. Home they said, and at that stage she was still mobile and self toileting . The fourth day on that unit was the last time she was able to get out of bed - with 2 nurses. Back on gynae she started to deteriorate and had a catheter / driver/ and oxygen

Social services rang me that Friday to tell me they were looking for a care package - 2 carers twice a day, air bed , oxygen , commode etc and asked if we had a downstairs room large enough of which I did and we did indeed start moving furniture about and that weekend she was given the walker by the physio department and we were sent home with the toilet raiser

Come the Tuesday, it was obvious to a blind man that mum wasnt fit to be moved. SS rang me on the Wednesday to say they hadn't been able to find a care package and were looking for a nursing home . Friday morning I was called to come asap, she was wanting me. Mum never opened her eyes again.

So they had to move her to a side room, the screams of that woman will haunt me. Do not tell me that a driver works controlling the pain, it does if regulary monitored and adjusted. Macmillan team came in, said they had a bed and would I agree to her being moved because although she might not survive the short trolly push to it, if she did they could look after her better there. Again, the screams of her being transferred.

Mum spent a lot of that day in pain , it was probably midnight before they got a good cocktail in place. She was mostly peaceful during the Saturday, probably going 4 hours before getting agitated . The nurses always gave her a wee top up before they attempted personal care to keep her as peaceful as possible

She passed at 3am Sunday . I was with her the whole time

I am forever grateful for the care she and I received.

Dont you sit and say that isnt how it works, because that is the reality of the NHS in NI - its beyond being on its knees

Saddest thing is mum who was mobile and driving right up till the day before admission had been trying for a week to get to see a GP, the earliest appointment was 3 weeks. She posted on her FB page , saying "Three weeks? Ill be dead by then " She was

That's my understanding aswell. You have to have been a resident here.
It seems somewhat cruel given how ill he is. Sorry for your plight here OP.

I’ve said this and others berated me for it!

Oh that's a pain

It is one of the significant ways we differ to the states. Americans know that medical care is something you have to pay (a lot) for or you don’t get.

Most people can’t even get an urgent GP appointment within 24 hours!

Actually, “burnout GP”, I have a lot of admiration for the NHS staff generally. They gave mostly provided my family with some excellent care in difficult circumstances. But I’m not so blinkered to think it’s perfect, especially at the moment. If you honestly believe someone will be able to access palliative care with all that entails at basically no notice then you’re misleading people.

We did. Next day. And OP is giving notice, see her last post.

How did you get on?

Just an update

We are still in the US. We soon realised he was no longer able to weight bear, it became apparent that we would not be able to get him home.

He has been brought back to his home in America, which has been an eye opener to say the least. They do not use syringe drivers here, so I am managing his pain with sublingual meds myself as and when required. Although we were discharged to home with no meds, but told they would be delivered shortly after we got home, although it was around 8 hours later which was horrendous. His oncology care in the US prior to this was brilliant and I couldn't fault it. The hospice nurses are truly incredible, but system is so broken.

He has deteriorated significantly today, and we will likely have him for a couple of days at most. We are just keeping him as comfortable as possible.

Thank you for all your kind words. I know it was overly ambitious, but I know that I tried everything I could to get him home. If I hadn't tried, I would never have been able to forgive myself. He came to terms with being in America yesterday morning before coming home, so I have comfort in knowing that he is aware we tried.

I'm so sorry, Ataloss.

Thinking of you Ataloss

Sending love from across the pond.

Sorry to hear that OP. He knows you tried your best for him. It’s good you are with him.

My sympathy too, @Ataloss23. It's really tough but, as you say, at least you know you tried your hardest to give him what he wants.

Could you maybe recreate a bit of Scotland for him? I'm thinking of sounds really, Scots voices, poems read by Scots, Scottish music... whatever you can think of. I know one of my aunts died gently while listening to a favourite piece of music and I always thought how lovely it could be to drift off like that.

Love to you.

That is a lovely idea

I'm so sorry. I hope that the next few days are as calm as possible for you all. You did everything that you could.

I’m so sorry @Ataloss23, You are a blessing in your dad’s life and knowing that you’re with him will give him such comfort and solace. I will keep you and your family in my thoughts and prayers for the days and months ahead.

Please accept a huge hug from an anonymous person on mumsnet. I hope your dear dad is peaceful and pain free in the time you have together. You did all you could.

Thinking of you.

kathryn mannix in her wonderful book on death and dying (with the end in mind) describes how often people who are dying talk about going home or going on a journey. Please don’t be surprised if this happens and your dad starts to think he is on his way home, in a way, he is, just comfort him. You are doing a brilliant job and your care shines through your words.

I am so sorry. Oncology services here are often world class but yes home health is a weak point and historically hospice has been under-utilised. It looks like a syringe driver is an infusion pump? We certainly have those.

Wishing you and your Dad love and comfort.

I'm so sorry OP. I hope you're able to control any pain he has and it's a peaceful last couple of days for you all.

I hope I'm not overstepping here and maybe it's not practical if Dad is so ill, but would you be able to play him some Scottish music while sitting with him? I know in my Mum's last days she smiled a lot even though she couldn't speak, when we played her the songs she and my late Dad loved when they were younger.

I know what it's like at this time, so I hope he has a peaceful journey and my thoughts are with you.