I haven’t been on this forum for a few years, when we were accessing help for my f-i-l, now I’m trying to find information for my dad. I am in Nz, and dad lives on his own in North London. He has been very independent and managed extremely well (he’s 98) until he had a stroke a year ago. He fought back at it and returned home and stayed independent. However it left him with dysphagia and 3 weeks ago he was admitted to hospital with fluid in his lungs, and treatment is not clearing it up…he has oxygen and a feeding tube and is bedbound. He has now stopped all treatment, including the feeding tube, and has decided on palliative care in a nursing home.
To get to the point, I think he would probably be better in a hospice (don’t know if a NH would accept him anyway)…if this is so, my niece wants him to go to one near her (Notts) so she can visit him but I’m not sure if you can go ‘out of area’, and also how long it would take to arrange, and the stress on him of travelling up there. If anyone has any experience or can tell me where else to look for information I’d be so grateful. It has been a nightmare trying to talk to anyone on his ward due to time zones and the phone just ringing and ringing, even my niece who is in the UK has had a lot of difficulty.
Thank you for reading this, I know from the past what a lovely bunch of friendly caring people you are
Hi Charlie, welcome to the forum. The best bet is email the carers helpline and they can point you in the right direction also, if your niece speak to her local doctors surgery, they normally have leaflets about different hospice or care home but also ask her to contact the British red Cross as they can help as well or if your dad is in hospital have her. To speak to the Pals or the doctors as they normally have some sort of service or information to hand.
All the best.
thank you Michael, I’ll get onto that…I feel so useless being stuck out here, but I’m a carer out here too. At least I can do the research
https://www.hospiceuk.org/
@charlie
As @Michael_1910123 the helpline is best for direct Q&A with experts.
FYI above the hospice UK directory with information
thank you Victoria, I do appreciate the help
Hospice care is usually free, however sometimes when beds are in demand priority goes to long term local residents because local residents raise the money for them. Sometimes I believe beds may be partly funded by NHS Continuing Healthcare but there might be complications or “boundary disputes” in certain circumstances. Some hospices have different criteria. Some cover any life limiting illness, others don’t. Bed shortages may mean that they only take people right at the end of their lives. Make absolutely certain that any plan isn’t going to fall apart at the last minute because of any unforeseen reason. My dad’s care at our local Oakhaven Hospice was wonderful.
@charlie a additional words before I sleep
Hospital to hospice can be an ambulance ride - less stress
It’s worth finding out if there is a Maggies centre nearby - they are cancer focused BUT they have their finger on the pulse of ALL hospice care for obvious reasons. They are always super-helpful, empathetic and if you call, within their open hours someone will help: https://www.maggies.org/
I concur with @bowlingbun’s points…
Dare I ask - forgive me for the bluntness but feel I need to say - your Dad sounds extremely ill, and like an uncle I arranged care for in London, near to potentially ‘end of life’ a stage where people say medically that they want to manage pain, make the person comfortable, avoid aggravations and focus on quality of each day.
It’s worth noting that I was told that if someone is determined to be in those last days, they’ll try to be placed in a hospice but not before because of bed shortages, AND because if the person is strong enough they’d prefer to manage the person at home with the community hospice at home care - otherwise they could have 'revolving door of 1 patient going in and out as palliative (like my Dad was) can be years…the best End of life timeframe someone gave me was perhaps days but not longer than a couple of weeks at best.
Pembridge were amazing with my uncle - the hospice may not be open - it wasn’t open Q1 last year BUT the team of specialist nurses, and the consultant were amazing…
https://clch.nhs.uk/services/palliative-care
I organised things in concert with my aunt and pembridge (the team are only in their borough not in the next one over!)
I called Maggies asked for the ‘lowdown’ for that borough they lived in, asked them to explain the ‘usual process’, hospice versus at home (my uncle didn’t want hospice at all), and how to activate things.
Perhaps you can do the same and ask for support in his borough before activating a trip to Notts??!!??
No advice but hugs. You are in my prayers too.
Bowling bun, Victoria and Thara…thank you so much for your replies. I feel very helpless halfway across the world and don’t want to pile too much on my niece, who is being an absolute star trying to organise things for her grandad and keeping me in the loop.
The discharge people at the hospital are going to arrange for dad to go to a nursing home near my niece (hopefully they can find one with space) and have said he will not have to pay, so I assume they’re doing it under the fast track CHC. They also said his transport will be arranged, tho I hate the idea of him having to do 2 hrs+ in an ambulance.
I am now quite confused as to if he is near ‘end of life’ or if I have been fearing it because of his lack of feeding and treatment…a nursing home sounds a bit more long-term than I’d thought. I’ve asked my niece to be blunt with the hospital when she next speaks to them and ask what his prognosis is and how long they think he has…but the biggest problem is being able to talk to anyone, even phoning from the UK!
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@charlie there would or usually is and admittance process, like when someone is admitted in to hospital, there’s handover notes and a general check As a relative your niece could ask for ‘what actions, medications and priority notes are being transferred to the nursing home’, understanding the ‘actions’ gives more idea of his status. No one will want to say ‘he only has x time left because it’s impossible to say.’
If I use my relatives as a ‘benchmark’ for you -
- how much they’re able to eat, if at all
- how responsive or not they are vs nodding and half asleep
- if they need strong pain medication regularly or in larger amounts
and as @bowlingbun said in a post once you can google the term symptoms for end of life and get an idea too.
prognosis is hard to nail in any situation. If it’s not too painful for your niece or relatives, …giving permission to your Dad to pass, if he’s too tired and in too much pain, is also something to think about. I reassured Dad many times that we’d be ok and I’d look after Mum.
TBH @charlie everything sounds like your niece has everything in hand and the staff are listening. At this stage nothing is good and everything is difficult. 2 hrs in an ambulance is not great but it’s equipped.
making your dad as comfortable as poss is actionable versus labelling or trying to define the amount of time he has left…
hope that helps - i may’ve derailed things with my comment about hospice and end of life in my previous message, sorry!
Hi Victoria - thank you for your thoughtful reply…I do agree with you about telling him it is ok to let go now if that is right for him…I have sent a letter for someone to read to him (haven’t been able to talk to him at all). If I had more information about his condition, if he’s eating at all etc etc I’d be able to look at end of life symptoms (thank you Bowling Bun for the idea) but all I know is what visitors have said to me about ‘he’s really tired/requested treatment to stop so no tubes’, and that’s only a weekly report so I can’t tell if he’s getting better or worse. I’m very close to Dad and it’s awful not knowing what’s wrong, let alone being able to help, and I feel so bad about it all falling to my niece.
It does sound as if the hospital are trying to do their best for dad, I have no complaints there, and I know there’s nothing I can do, but just wish I had a better understanding of everything. Must be the control freak in me 
but I had to advocate long distance for my father in law a few years ago, in a similar situation, so it’s a bit of deja vu!
Thank you for taking the trouble to be so informative and helpful, I knew it was a good idea to revisit the forum 
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For a year my mum was in a nursing home. I’d visit one day, come home and say mum was very near the end, the next visit she would be more like her old self, it was very confusing. For you, so far away, relying on information from others, it must be so much worse. When mum moved to the nursing home, the care manager assured me that they could deal with whatever happened until she died, apart from uncontrollable bleeding. They had immediate access to morphine, prescribed by the doctor. Nursing homes must have a registered nurse on duty at all times. Having travelled in an ambulance for an hour, it was a very rough ride, just going to a hospital appointment. After a mile transfer, mum was in so much pain she needed morphine on arrival at the nursing home. A two hour journey might be very difficult for dad. Such a difficult situation. Does dad have a “key” nurse who liaises with you on what is happening?
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the only person who talks to me about dad is my niece, and she’s found it difficult to find someone who can talk to her as she can only get down to see him at the weekend when there is only ‘Saturday staff’ who don’t really know him. She said today that she has a phone number for the discharge nurse, so hopefully she will be able to ask her some questions and relay back to me. I am pretty worried about that journey, but not really understanding Dad’s condition, I can only hope they think he’s up to it. I’m trying not to overwhelm my niece with questions as I’m sure she tries to keep me in the loop, but it’s hard not knowing about someone you love. Thanks Bowling Bun, it’s a relief to be able to talk to other people who have, sadly, been through the same thing.
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@charlie Oh Gosh a sudden thought - can your niece use an iPad or her phone and facetime or videocall your dad and you together!??
Even if your Dad looks bad and even if you can’t talk to medics or people this may help you AND your Dad and your niece!
Hi Victoria - that’s what I’m hoping I can do once dad is in a home, and hopefully will be nearer for my niece to visit. At the moment I don’t always know when she’s visitiing and I’m not very chatty at 3am (I’m 13 hrs ahead of you guys). And part of my problem is international lines…sound like we’re speaking underwater! So once he’s settled hopefully we can arrange something like that in conjunction with the home…maybe they’ll have a landline I can phone him on 
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Hi Charles
I’m so sorry you’re having to go through this awful situation, so difficult when you are far away and unable to contact anyone. I have just left the NHS after 27 years and the frustration was deep that relatives couldn’t get through on the phone. I would get in contact with the pastoral team, ours would pass on messages from relatives, started during Covid, and had iPads to use, they often have more time which is to support and care for patients and staff regardless of faith. I would also contact the local adult social care team at the local council who help find nursing/care homes and ask for their support explaining the logistics of your issue. The other suggestion would be to contact PALS, it is not just for complaints, they would also be able to liaise with the ward and arrange for someone to call you at a suitable time, they would only need to confirm with Dad that he is happy for them to speak to you. Sending you lots of warm wishes and thoughts
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Sorry Charlie! My son is Charles/Charlie
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thank you for your reply Chrissie, you’ve given me some avenues to explore. And no problem about the name…Charlie was my beloved dog whom I lost 3 months ago, and I called him Charles when he was in trouble 
so it’s nice to hear it again
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Ah no problem and yes my son is called every variation of Charles, Charlie, Chaz, Chazzer depending on his mood, he is 23 so maybe I should stop now 
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Well things have moved on…Dad is still currently in hospital, but I’ve just heard he’s being moved to a nursing home in Notts, not too far from my niece, on Friday. His lovely neighbour who has known him forever said she visited him yesterday and was pleasantly surprised as he looked a lot better, tho still extremely thin as he can only have pureed food, and seems to be only happy to eat custard. I have, at the back of my mind, the’last rally’, but hope he is improving a little and will cope with the long journey. Hopefully I will be able to arrange with the Home a strategy for phoning dad, so I’ll be in touch with them after they’ve had a chance to settle him…
i’m sure I’ll be asking for more information/advice from the generous people on this forum, but in the meantime, thank you so much for your support so far