Im still in hospital & have been for the last 2 weeks with my Interstitial Lung Disease & Pulmomary Disease god knows when I am discharged in the " normal way"
When I say " normal" its going to be a Hospice or a .hospital ( a choice i have said No No -) back at home & i said im sure thats what all 3 of us want. My specialist said that a lot of critetian has to be met
I never ever thought id hear the words where am i living next & certin criteria has to be met
To live at my mums is whether we can get some machine that holds 15 litres of oxygen that me mum & dad could use without too much training. I thought maybe that we could use the full 10 litres on one of them & 5 litres out the 10 & see if thats feasible because i know how to use them without training & Baywater ( who the NHS use ) for their medical stuff
I am doing well on 15 litres
We put that to my specialist - she may have other ideas to put to them- theres more of a chance of them saying yes than if we phoned up. Despite my opinions of carerers We ll have to have 2 sets of carers one set for me & one set for mum & dad as thryre both nearly 80
If they say no ( which im ver very sure beyond reasonable medical doubt) -I have to be realiztic here & not get any hopes up only for them to be dashed
My only choice then will be to live in a hospice to see out my dying days My specialist either she can get me a place i cant remember but what she did say was i would have to wait for a place & i think the time frame she gave was 2 weeks - but that wouldve changed now - it. It could be a case of no places at all The nearest is in Rochdale. If it definitely has to be a hospice then another local one will have to be sourced by my specialist.
If she refuses then i ll put her under pressure to temporarily let me stay with my folks plus carers & see if baywater will join the concentrators
Im putting my foot down & make it clear ii am not living in the hospital since shes admitted theres nothing more the hospital can do & admitted there was no point in me being there. I might put it to
her then what about her finding me another place thats similar to a hotel but dirt cheap (& i dont mean charity places - sorry to say that but i know someone who lives in one or similar came round one day unexpectedly & he had a black eye which he was given while there & theres a lot of violence stealing for drugs
So im going to see what she ll do
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Sara_2611
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Ps if u manage to go home with parents,ask hospital or gp to set up palliative care.it often involves the hospice at home + could be very helpful for you.xxxc
Hi Sara, I’m sorry to hear about your problem, my husband has this disease, he’s just come out of hospital after 10 nights, his oxygen dropped quite badly and I called 999, it was quite a drama at the time as I was also very poorly. My heart goes out to you. I hope you get it sorted. Sending you a big hug. 🥰
Hi Sara. I can't imagine what you must be going through not knowing where you will be going next. Your oxygen needs are high but I do know people on similar litres and are at home. I really hope you can go home to be with your parents. I am thinking of you during this unsettling time. Please do keep us updated if you have the energy to. I truly wish you the very best.
Sara your fighting spirit has obviously got you this far and I truly hope you get to go where you want to go for your last days. What a situation to be in but wherever you are we will all be here for you. Stay strong . I'm sending calming thoughts through the air waves. Good luck.
My heart goes out to you Sara, I do hope that you get the result you want, other than that a. nursing home as others have suggested could be the way forward. Sending love and hugs at this difficult time x
I feel for you and send you best wishes and a bit of good fortune..... try and put your foot down and get home with carers if you can. You stand a much better chance of being ok if you have some peace of mind being in family home near to those you love. Very very best of luck Sara xxx
Dear Sara, you’re going through a rough time I’m glad you still have your parents and a supportive worker. As you know although your situation seems dour at the moment, it will improve once you are settled in your new abode. Don’t let the system grind you down. Hold onto your ideals and I truly hope you get your needs for filled. After all you’ve been through it would be a rotten shame in the time you have left, not to be in a place of comfort that gives you some level of joy and happiness. You have shown yourself to be stronger than you imagined by speaking out. It’s about time someone tells those on the outside what services are really like and it’s a lottery to get that “so called “! “Care in the community “
Good morning Sara, im so sorry you're having to go through this. Goodness me what a difficult time you're having and an awful dilemma. I sincerely hope there's good news today and that you can go home on palliative care. Hospices are always lovely with patients of all ages and the staff are very well trained to care for your needs in the kindest possible way. That would be my choice if they say no to going home. 'Nursing' homes dont always have nurses on duty 24/7 and a carer at night. My husband went to a rated 'good' one in West London age 64 (bone cancer), it was supposed to be for his last three weeks however, he was there for 14 months. It was fine when he was mobile to get to the lounges & dining room.
I hope you'll let us know how you get on, meanwhile I'm thinking of you. Peege
Aw, thank you Turnipgirl, that's kind of you. Long story. Robert died 10.12.2010, so we're all mended now, just sad at times that he missed his 1st grandchild by five weeks (plus the following five over the years since). 🙏
Many years ago when I was 17 I worked in a nursing home on a weekend and there would be a mix of trained nurses and care assistants on a shift and they would have staff working both upstairs or downstairs as it was a big place!
Hi Sara, I am angry on your behalf because you have been let down by the system that should be putting you and your needs front and centre. I have ILD, too. I was diagnosed in 2016. I had a spell in ICU in 2017. Apart from the odd chest infections, I have managed to keep out of them. I am under Papworth and I thank my lucky stars that I am - the care is first class. I take the usual drugs - Mycophenolate, OFEV (to slow progression). It is ironic that my ILD was caused by a drug reaction and now I have to take a load of drugs to slow it down! When I am sitting, my breathing is perfect (as it will ever be for someone who has asthma since birth). But, I am on ambulatory oxygen 4L. I am with BOC. I also get a home visit review every 6 months from the Community Respiratory Nursing Team. Sara, talk to your consultant again and ask her if they have had a MDT meeting. MDT - multi-disciplinary team meetings involve the consultants, physio, respiratory nurses, ot and anyone else involved in your care. If not, why not.
There is another reason I contacted you - after reading your situation and the lack of support, there is a wonderful charity called Remap. They make adaptations for people who can't access it mainstream. They have engineers and other wonderful people working to make those in a similar situation to yours, lives a lot better. Here is the link,
hi Sara, Bayswater oxygen supply my husband with two concentrators at home, he is on 12 litres we put them both on 6, seems to be coping as well as he can, he also has intestinal lung disease, fingers crossed you get home soon .
What an awful situation to be in and I hope and pray they will be able to accommodate your wishes upon discharge. You should have the right to be involved in the decision making. Best wishes and good luck.
Dear Sara, what a difficult situation for you and your family. Although a doctor will need to refer you to a hsopice it might be worth speaking to your local one as some of them have outreach staff or may be able to help you. I do realise though that hospices vary in what they can offer.
I hope that it all slots into place for you and your mum and dad. x
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