Hi my mum has had ipf for over 3 years now she is on o2 24/7 and as a family we can see her declining. Her gp has issued her with a DNACPR at the recommendations of Macmillan nurse. At the moment I feel my heart is breaking and don't know what to do. She has all her funeral plans in place as well.
How do other families cope with this?
Many thanks.
Hello yodalass, that’s so difficult for any family to cope with I feel. Sadly for many that’s how things are.
Pete had severe sepsis and someone spoke to him about DNR should it become necessary. Pete agreed but was shocked and I was upset because I wasn’t even with him. Luckily he pulled through.
Has your dear mum agreed to that? It’s heartbreaking but I hope you can get through as a family and all pull together.
My heart goes out to you all. Xxxx
Hi yeah she agreed with the nurses and gp.. Christmas day I found really hard but my mum is going to Wales for new year with my step dad..they have had her oxygen delivered to the hotel so I know she will be looked after there and us as a family will be able to relax for a few days which we need at the moment.
Thank you for reading this it's first time I've been able to talk about it anywhere.
Hi I'm so sorry to hear about your mom, I'm sure you are looking after here really well, and giving her all the love and support she needs. I know how hard this must be for all of you but please try to be strong for your mam. Please take care and feel free to post any time. Someone is always here to listen. 😊 Bernadette xx
Hi I am so sorry to hear this. Usually DNR's are only done with the consent of the family and we felt it was the right thing for both our parents as they wouldn't have wanted to go on longer.
All you can do is be there for your beloved mum and try and build up some lovely memories to try and sustain you when she is no longer with you. Don't forget to take care of your own health too as this is often forgotten.
Wishing you all the best and thinking of you. x
Well it’s hard for them I’m sure I know I am always being asked and I keep refusing to sign but obviously your mum has deteriorated quickly and the nurses know what they are do😚😌
My heart goes out to you. I had a weep after reading your post. As it's not that long ago I was in the same position as you with my beloved husband. This is what my doctor told me. A dnr is to prevent further suffering as resuscitation in elderly weakened people who have not long left to live invariably results in broken ribs, which is painful and worse if internal organs are damaged by the broken ribs. Nobody wants to die in pain or without dignity, so that is the reason for asking for permission for the dnr. After telling us this we agreed to the dnr. We didnt need it. 1 week later he slipped into a coma and passed in the early hours, pain free!! It is the realisation that hit me, thst my husband was actually going to die soon. It hadn't sunk in before we were asked about the dnr.. hope that helps. Better to be pain free, when dying is inevitable. The nurses do know. As for your mum, as she has sorted out her.funeral already, sounds like she has accepted the fact she may not have long, and she maybe weary now of the struggle life has become. The trouble is we are not comfortable about talking about death to our family because we don't want.to upset them. Pity really. Kindness of wishes to you and your mum. Love pat xxx
It’s a very difficult situation for you, and I do sympathise.
Can you contact the Macmillan helpline after the holidays...the number is on their website. They can listen and understand .
Take care.
Hi,
I lost my Mum in Jan 2017 to IPF and she was asked the 'DNR' question about 10 days before I lost her. At that point, there was no indication that she was nearing the end of her life (even though she was in hospital), but I guess it's a question they must ask if a patient has a serious medical condition. This website helped me to understand alot about lung conditions, especially IPF and offered me so much support that I will be eternally grateful for.
I know exactly what you're going through, having been there myself, so please don't hesitate to contact me if you need to talk or have any questions.
I am thinking of you, your Mum and your family at this sad time.
Lots of Love
Julie xxxx
Hi yodalass .
I think it is important not to avoid these conversations with your mum. Or with your other loved ones. Talking about the end of life is difficult, but it does ease a lot of worry for you and her. Please do keep us updated if you'd like to. Talking will help immensely. Take good care of yourself too. Sending hugs and love.
Cas xx 🌹
Its a very sad time for you yodalass, my mum sent for dnr forms herself before she got cancer, she didnt want to survive if she had a stroke. I talked to my mum about all of this and think they accept it better than we do. I wrote down all the things I wanted to say to mum before she went so that I didnt say after, I wish I had told her this or said that. Keep your chin up and try to be strong for both her and yourself. Wishing you well xx
You are both in my thoughts and prayers.
Hello yodalass, your post has touched a nerve with me too. My husband has IPF and was declining fast when our Consultant had 'the conversation' with us. She is a no nonsense lady which we've always appreciated but it was tough to hear "you need to put your affairs in order". My husband agreed that the did not want to be resuscitated if he was admitted for exacerbation, and had a heart attack as it was almost impossible, if ventilated, that he would ever come off it. He went to to our lovely GP, who talked him through the process and we put information for paramedics in our house and he carried it with him too. We were told active management of his disease, or an emergency, would not stop. Once the decision was made, it became easier to talk about it and make choices. It was ready for use when necessary and we could get on with whatever life was left.
I don't know if you have the option of the transplant route but we have been blessed for sure as he received a new lung last week and is doing well at present in recovery.
Looking after ones self in these situations is so difficult when you want to be strong but feel so beleaguered but I cannot encourage you enough to get a break when you can, take exercise if you can and absorb all the supportive energy you can from friends and family.
I wish you and your family the best for the future.
Can you put DNR on your records without telling your family?
Hello Yodalass.
I too have IPF and it has suddenly got worse. Does not help that I saw the consultant in November and have just seen his letter to GP sounds like he was talking about someone else as he was talking about being clinically stable, but might need to consider oxygen at some time - he put me on that last summer!
Anyhow, I totally agree with the comments made about DNR and advance funeral plans. Also, putting in place a power of attorney and making sure every thing in the will is a good step - I know it is a horrible subject to bring up, but my mind is much more at rest since I did it. A power of attorney used to be a doddle to put in place, but now our dear government has stuck there oar in and increased the red tape. Luckily our family are accountants so we were able to understand it.
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