Looking for some advice for dealing with a terminally ill relative with IPF

Hi good people! As I grow older I seem to be joining more and more HealthUnlocked Communities but normally as someone who has a condition.

I have joined the BLF Community for something different though - how to help a relative with IPF, desperately ill in hospital. My 75 year old recently widowed sister who lives in France, was told yesterday that she has not long to live because she is not responding to any treatment. I leave the UK to travel to France tomorrow to spend some time with her. At the moment I don't know whether she has days or weeks - but we know it's not months. So, this is really not a lung specific post - more of a care question. Sorry if I'm off-message but this is as good a place to start as any.

I have spoken to her on the phone but don't really know what to expect. She is in a specialist lung unit in a room on her own. Because her mental faculties are failing as well, her ability to communicate in French is very limited and I'm very concerned for her mental welfare on top of the physical side of what she's going through because she must be very scared.

Unless you work in this area, ordinary life in Western civilisations gives you little training for dealing with terminal/palliative care and I have never been confronted with having to deal with someone who knows the end is near and certainly not a close member of the family.

Is there anybody who's going/gone through this either as a carer or sufferer who could give me some advice as to how to work my way through this?

34 Replies

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  • I haven't gone through this personally but just want to say it's wonderful you are going to be with your sister and she will love to know you are there. You are not off message either as your post is completely relevant.

    I do hope you will spend some quality time with your sister and l do wish you well and your sister peace. Take care. Xxxx

  • Sassy - thanks so much for your post. I'm all she's gotleft now... I'll do the best I can.

  • Tractorman.My heart grieves for you,i have just been through this process with my dear wife Cecilia who passed away in January with an IPF exacerbation.she went from basically normal/managed condition to fatal within 4 days.I can only suggest the firstly you try to get the hospital staff to manage her breathing as best they can with O2 therapy be it forced ventilation or otherwise so that she is as comfortable as possible and not fighting for breathe and also to ask that they administer either Morphine or similar medication at the appropriate level to sedate her so that she is not in a high state of distress.

    Secondly if she is comfortable and can be moved into an open ward with some degree of privacy but can still have the ability to see life around her would be preferable to isolation alone.Your love and proximity are the most important thing at the moment and you must be prepared to be strong and comfort her as she exits this world,believe me it is a harrowing experience and i am cracking up as i write this but please try to be strong for her.

    i am sorry this will not be much relief for you as you venture on this journey but just try to take it step by step as every scenario is completely different.May your God bless you,unfortunatly i am an atheist so i only had my inner strength to turn to

  • Very sorry for your loss skischool. Your post was tons of help thanks. I'd say bless you -but Ta Lots! instead.

  • i am very concerned at the abrupt manner in which the hospital staff have dealt with your sister,perhaps they have had problems linguistically in preparing your sister for the future,i can not over stress how important it is to comfort her and to a certain extent underplay their prognosis.Also to make sure my suggested routine is adhered to especially when you may need to leave her as hospital staff universally are not always very good at end of life management particularly with patients who struggle to communicate.Cecilia was bilingual but due to a previous stroke could not communicate her immediate needs.Bon chance mon ami.

  • Interesting - I have concerns along those lines as well. The best you can say is that the message coming from the medical team has been inconsistent. I will reserve judgement until I get there however as I'm not sure my sister is understanding everything she is being told. My French is also actually very basic so it will be the blind leading the blind! Thanks for your post skis cool.

  • I have PMed you a link that may help with your own worries.

  • Thanks 2greys, much appreciated! 🖒

  • Hello Tractorman

    My heart goes out to you and to your sister. I have a different lung condition but great advice from skischool from the sad experience with his dear Wife.

    I hope the fact that you have managed to get out to France to be with your Sister will give her and yourself some comfort.

    You are not off message at all and I am glad you reached out. Everyone here at BLF is very generous of spirit.

    Will be thinking of you both. Please keep in touch with us either whilst in France or when you get home.

    Will be thinking of you both.

    With love

    cx

  • Beautiful post - thanks. I promise to keep this post updated because I have had so much love from total strangers. I am humbled. Thank you all...

  • Hi I am so sorry to hear about your beloved sister. I can only add to be there for her as much as you can. Talk about old times and good memories as I am sure she will appreciate that. I doubt whether she will be able to say much but just keep on talking to her.

    Even if she is very tired I am sure having you there in silence will be very comforting to her.

    Don't forget to take care of yourself too though. Post on here as often as you want to and we will always listen. My thoughts are with you both.

  • lilaclil,

    " Post on here as often as you want to and we will always listen."

    Thanks but that seems a bit selfish. There are too many people on this site who are suffering directly rather than 2nd hand.

    I have to say, I've been on "BottomUnlocked" :-) for about seven months - four Communities - although this has been the most emotional - and the amount of help, advice and general love I've received is truly amazing.

    Please accept my thanks and appreciation. The next few days will be difficult.

  • lilaclil speaks for us all. Come back as often as you wish.

  • It doesn't matter. You are the one in crisis right now and we are all here for you. On here we give to those that need, and when it's our turn to need others are here for us. Not selfish at all. :)

  • I have so say that in a strange way I am somewhat envious! Okay, I don't mean to be in any way insensitive but every person I have lost has been sudden - from suicide to massive heart attack (and everything in between).

    The opportunity to sit, relax and reminisce, to talk, build memories for your future, spend time mentally and physically preparing, being selfish noting every sound, smell, phrase and visual to hold in the dark times.

    Don't dread the future and what it holds ... rather enjoy the present, savour the now and treasure the time.

    The end will come for all of us it's about what you do before then that matters ... to both of you.

    Live, love and enjoy the moment.

    I mean no disrespect - I hope I made that clear ... build memories!

  • "I mean no disrespect...."

    And none taken - what a different & positive attitude - thank you. She and I have such good memories. Not sure I can cry for three days though LOL!!!

    Jeez, what a response...

    Thanks everyone. I am dreading the next few days; this WILL help.

  • My mum died 4 years ago on Monday and I am dreading it. I was told hearing is the last sense to go so my sisters and I concentrated on talking to her and trying to give her some peace and comfort.

    I like to think she heard us. xx

  • y-not Wonderfully poetic and wistful vision of life you have.it might not quite be the time for building memories or reminiscing when your partner or loved one is fighting for their last breaths before they leave this world.But it is not for me to judge.We all have different outlooks on life.

  • You are both right actually - it will be a question of timing. At the moment I think she is still capable of talking and is lucid enough to be able to join me in some recollections of better times but I know that sooner or later it will become much more difficult to do anything but just be there for her. I have to come home on Wednesday though. Part of me hopes that I won't be there at the end and the other, braver, part wants me to be there for her.

  • Thank you - after writing it I debated deleting it in case someone misinterpreted the meaning - I'm so pleased they received it as it was sent.

  • Tractorman...There are no set rules on how to deal with someone who is close to passing.How lucky you both are that you will be able to spend some time with her...enjoy every minute you are able to be with her, even if it is just holding hands.

  • Well said. Thanks for your post piping...

  • G'day Tractorman...saddened that you need this site...but as others have said "you have come to the right place"...many here have endured what you now find yourself facing...saying goodbye to a loved one...I cannot agree more with the comments ...If possible have her moved into a ward where there are others (if possible) and preferably near a window, even to be able to hear voices is far better than the silence....Do you have any old letters from her or any other family members...these can be stimulating for your loved one...just sitting there and reading them to her can perhaps give her peace...IPF is a beast of a disease as anyone who is suffering with it can testify, but no one has a use by date stamped on their forehead....The medical staff may be administering meds which can cause variants in response and consciousness but from what I have experienced...a familiar voice...music or names of family members can bring about awareness....I wish you God speed on your journey...may you have the courage to face and deal with the situation you are now in.....Please use this forum for any reason...there is always some kind soul here who may be able to help.........

  • I am carrying letters from my wife and also we have heard the news that tomorrow my sister will become a Grandmother for the first time. Something else to live for....

    And now my friends, I have a train to catch.

  • There is nothing constructive I can add to the above but want to send hugs and good wishes to you both for the difficult days ahead x

  • Thank you Dedalus, much appreciated 👍

  • Hi Tractorman you have had some great replies to which I can't add, but just wanted to wish you well. Xx

  • Thanks Sheila ...

  • I have Ipf and should have died 5years ago approx.One year ago I was put on 9perfenidone pills per day.It seems they are slowing down the progression as my readings have not dropped much since .Tested two days ago.Not sure if this is of help but need to spread a bit of good news from my viewpoint.Good luck with your case.

  • Hi Billybob. Good to hear that and it gives hope. Out here they call it Nintedanib - it costs abut £40k a year in the UK which is why its not prescribed there (this is according to Wikipedia - I know nothing!) . My sis doesn't want to take it as she thinks it gives her hallucinations - any side effects for you?

  • Hi tractorman.I was told my esbriet(perfenidone) costs £25.000 a year here.The only side effect I had was slight loss of appetite.Not real problem.

    I just had 1st annual assessment.Result was good.Readings were same as at start ,one year ago.Sorry about your sister's side effect.Is it definitely caused by this treatment? Surely it's best to take it if it slows down the ipf and gives extended life? Regards,Billybob.

  • I am caring for my brother who has been fighting throat cancer since 2015 , I am grieving for him and he is still here and it's by far, the hardest thing I've ever been through, if I could have took his tumour, voice box removal and 36 very aggressive doses of radiation to his head and upper body not to mention the crippling depression he has, it would have been so much easier to do so don't you ever feel wrong for "just " being a person who cares, it's not easy but it's so vital and makes all the difference to a sick person, god bless you xxx

  • So sorry to hear about your brother. Our situation seems to be reversed except my sister is not as compromised as your brother is. Good luck and I wish you continuing strength in what must be a heartbreaking scenario. I have updated my news in the next post.

  • An update for all you kind folk who have posted support for me:-

    Although obviously in a bad way, I'm relieved to report back that my sister doesn't seem about to checkout imminently nor should I think in the next couple of weeks. In fact, was it not for the type of oxygen support she requires, they would send her home as that's where she would like to spend her final days. Sadly I think that's not to be.

    We have talked frankly and pragmatically about the situation as only two people who are in denial can do!:-). The nature of her conditon has only one possible outcome - it's really about managing the time between now & then.

    For those of you who suggested an open ward - there are none in the Pneumology part of the hospital! Her oxygen m/c is pretty anti-social so perhaps its just as well. She's getting plenty of visitors so lack of contact isnt an issue so far. Today I return to the UK but so glad to have seen her and vice versa. I hope I will get another opportunity but that's with a higher authority.

    Thanks to everyone who's shown an interest - it's really appreciated and I'm sure that the journey ahead will see me calling here again.

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