IPF

Hi I am new to the group my father has IPF now for over 4 years and was doing well but recently has started to deteriorate rapidly he is sleeping much more during the day and the doctors have started palliative care for him. I know he is near the end of life but I am struggling to understand how I can help him in the last few months. would love to hear from anyone who has been through this or is going through this who can offer me some advice on how to help him or what I can do to make these last few months as happy as possible for our family.  thanks in advance for any help

6 Replies

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  • Hi DavidSnow, I am sorry to hear about your father and have no first hand experience of IPF but I am sure someone will be on soon who does.

    I just wanted to say that being there for your dear father will be great for him, just knowing that his family are close by will be of comfort too.

    Sending you good wishes and strength to get through this. xxx

  • Hi DavidSnow, I'm sorry to hear the sad news that your Dad's health is deteriorating. I have no experience of IPF personally but know many on the site do. 

    As with any condition, I would recommend you talk to your Dad about the happy times in your lives, be there if he needs you, take him out, if  possible, to places he would like to visit. 

    Just being there & showing you care is all he needs

    Thinking of you & hope you manage through this difficult time 💐

  • Hello DavidSnow,

    It is a very sad time for you seeing your father deteriorate - just try and be there for him as a family as much as possible, so he won't feel lost and alone.  I feel pretty useless at offering any advice for I really don't know anything about IPF, or how far along the road you father is travelling.  Is he well enough to have you all just sit with him and go through old photographs or even a move to another room for a change of scenery. You don't say if you think he could make it outside with help on a warm day. I do wish you well...it's important to keep up your own strength.

    xx

  • Hi ,sorry to hear about your father , am a sufferer of IPF two and a half years , but was only given 6 - 18 month  - so happy so far , All I need is true feeling of love - when I am struggling for breath , my wife of 50 years gently hold my hand and it slowly brings me back ,  John 

  • Hi john

    thanks for your post. it is such a horrible disease. I wish you all the very best for the future and big love to your wife for caring for you in such a great way stay strong

    david

  • When my Father was dying it seemed to make him really happy to listen to lots of the music he liked. He didn't have IPF.  My Mother said he loved listening to the music. They held each other and pretended to dance while he was lying on the bed. I am sure the other suggestions of memories and special times spent together are very important too. I also spoke to my Father about dying. I told him he must not forget to make contact with me when he reaches the other side - I will be waiting to hear from you. Some things may not be appropriate depending on your Father's interests or beliefs. Try and get him outside for some fresh air if the weather is suitable.

    I am so sorry that you will be losing him. I never got to see my Father for years before he passed away but we did speak on the phone almost every day. Don't forget to tell him all the things you want to say to him. Some men think it's being soft to say "I love you Dad". It is not soft at all. It may take you strength but you will never regret telling him how special he is, has been, and how much you love him. Also say sorry for things that have gone wrong between you.  It can be helpful if there have been some really bad times but try not to focus on them. Just if there is a need to say sorry now is the time. Get that over then concentrate on all the lovely memories and times. I had made a special CD for my parents of all their special music. This was the CD which was playing when he actually passed and although it was, of course, all extremely sad it did sound very beautiful and peaceful. I was too ill to travel down but my Sister telephoned me just before he passed so I spoke to him just minutes before and told him I love you, Dad. It made me feel as if I was partly there with him being on the phone with them all when he passed.

    Love and Hugs to you from

    Twinkling Star.

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