View Full Version : Awkward questions

3rd February 2015, 13:44
I am now 100% reliant on my BiPap machine. I can come off it for a minute max.
1st question. If there is anyone else in the same situation as me how do you cope?

2nd question. I am seriously thinking of going into the hospice to have the machine switched off soon. I know this will be hard but has anyone been there when they switch the machine off. Everything has been explained to me by the hospice team, but I am still scared because my brain is still ok.

I have two machines in the house and I'm afraid to go out of the house now. I used to take a machine out with me but now if the machine beaks down or something I'm afraid I will die gasping to breath.
I keep hoping I will die in my sleep.
I keep waking up in the morning and then start crying.
Sorry if this post has upset anyone.


3rd February 2015, 14:27
Hello David, I feel for you so much. What to say? I see my husband struggling to breath but because it has happened gradually over months, he dosen't seem to notice, eveyone else does. I asked at the Hospice this morning and they did say to me that if he continues to refuse Bipap then he can be made comfortable. Can I suggest that you ring your Hospice and have another chat with them again and discuss your fears. I understand your wanting to pass away in your sleep, that is what I am praying and hoping will happen to Jim when things get worse, but I can only say that on here or at the Hospice because people don't understand. If it helps you, post often and tell us all you wish to tell we are here for you David. Hugs and thoughts Spring xx

3rd February 2015, 14:46
I have had a peg and also have a nippy machine. To be honest and have not felt the same since the peg was put in and struggle to wear the mask because of saliva build up. I am told I was brave to have the peg done, but now I wonder. Yes these things extend your life, but if it is not quality life what is the point. I really feel for David and what he is going through and often feel the same. The hospice is the best place David if you can get in because they are so kind and caring and would look after you very well. Thinking of you my friend.

Nettie B
3rd February 2015, 15:04
So many people with such sadness and such big decisions to make. This site can be heartbreaking and I can't help feeling "Why is all this suffering necessary?"
I agree with Jane, David. You need some facts about what might happen if you don't continue with the Nippy. Then you might be better placed to make your decision and not be so frightened. I hope and pray that someone who really knows can be totally honest with you.
Some nights I hear that Trevor's breathing is very shallow. Instinct tells me to just touch him to stir him so his breathing improves. I often wonder if he really wants me to do this and yet despite whatever he might say I know his instinct to continue is still there.
What a lot of quanderies we all have don't we?
God bless you and your wife. May whatever you decide be possible and the right thing for you.XX

3rd February 2015, 15:43
My wife and I have just had a talk about it. She agrees I have no quality of life. Obviously she want me to stick around for as long as possible but it hurts her to see me get weaker every day so she agrees that the best thing for me is to arrange to come of the machine.
That's what I want but I am a coward and don't know how I'm going to pick the phone up start the process.

3rd February 2015, 16:00
My heart goes out to you both David. That’s a decision nobody ever wants to face xx

3rd February 2015, 16:08
Speak to the hospice David, they will fully understand and help you.

3rd February 2015, 16:31
Dear David;

You were talking about this in November and I'm so please that you didn't do this close to Christmas as your family would then associate both together.

You are helpful here with good information and posts.

I can understand you waking crying, I feel quite sad sometimes. Silly question but are your sure that you will be gasping for air with the machine switched off.

Regards Terry

3rd February 2015, 16:48
My wife and I have just had a talk about it. She agrees I have no quality of life. Obviously she want me to stick around for as long as possible but it hurts her to see me get weaker every day so she agrees that the best thing for me is to arrange to come of the machine.
That's what I want but I am a coward and don't know how I'm going to pick the phone up start the process.


Really feel for you as it is the most agonising thing to do.
I was diagnosed in Jan 2014, with a years prognosis due to respiratory decline and I discussed with my wife and family the heartbreaking decision to refuse all invasive and non invasive treatment. This decision was made from a quality, dignity and sadness perspective . There is no bravery at times like these just the wish for peace and to protect those you love from extreme sadness.
Since making the decision my hospice has been brilliant making sure that my decision was sound and capable of standing testing . Your Hospice will help and comfort you, I'm sure.
We are all thinking of you and understand your torment in these very difficult times


3rd February 2015, 16:53
It is so awful to be in your position David, I really feel for you.

I know Jean wasn't on a ventilator but when she switched to end of life care she was sedated to help slow her breathing and I can say she had absolutely no discomfort as far as I could tell only slight stiffness in her joints. She was given morphine by syringe driver which was kept constant.

Jeans passing was so peaceful. She went to sleep Boxing Day evening when I left and next morning was sleeping when I arrived. She never woke up and her breathing just became quieter and slower during the morning. In fact Jean had passed and we hadn't even noticed, I was still holding her hand and talking to her when district nurse came to do her morphine and they said she had already gone.

I pray that this will be like this for you, it's what you all deserve.

Wish I could do something to help.

Alison xx

3rd February 2015, 18:04
This is such a delicate, difficult post and it is so good that you trust us all to share your feelings with us. I agree. Talk to the hospice and see what they have to say. Each and everyone is feeling your pain, David. You are all in our thoughts and prayers. Love Joycie x

3rd February 2015, 18:43
I feel for you in a big way David. Contacting the hospice would be my move. Fingers crossed you get what you want.

3rd February 2015, 23:33
A week before mum died she asked the MacMillan nurse to be put to sleep as she didn't want to go on any longer. I'm sure each morning was dreaded for her too. The most they could give was sedation and it was put through a syringe driver. She slept a lot almost immediately but did wake off and on. More importantly she was calmer and not in pain. I'm sorry you have to even consider making such a decision. The Hospice or Macmillan nurses know their stuff and I pray they are able to reassure you.

4th February 2015, 01:40
David my heart goes out to you. You say your a coward? I can't think of a braver decision to make. I wish you inner peace, and inner strength. I hope your days are surrounded with your loved ones and filled with love, and comfort.


4th February 2015, 01:54
David, I don't know you yet I'm sure you are not a coward. I want joe to be here always for me and our boys yet Im certain that is selfish. I feel your pain and distress, may you find the peCe of mind to make the best decision for you and all those who love you.

4th February 2015, 02:21
Hello David,
I love your post because of the calmness that came out of it. You know the answers as to what step you will take next. I admire your courage . When the time is right surround yourself with your loved ones. The hospice staffs are qualified to make the transition as painless and as comfortable as possible. It is very necessary to be thinking about this important event now, although i can't help feeling some sadness.
Thank you for introducing a topic that we will all at some point have to bring on the table.
Best wishes

4th February 2015, 04:12
Thank you for bringing this topic up. We all have to think about it. My breathing is getting worse as well. My husband and I have had many talks about this. I am glad you chose to bring the topic up and let us support you.


4th February 2015, 05:10
Ciara mia you brought up an issue that David has said. Loves ones so often can’t and refuse to let go even when it’s the wishes of their loved one that is suffering. Hospitals and hospices here have whole committees to help loved ones let go during an extremely difficult decision process, as I’m sure they must there as well.

I hope you surround yourself as well with all the right support for all of you. So much grace and dignity in your words David. God Bless.


4th February 2015, 18:28
Although I am not a religious man my wife is Catholic. One of my friends is a lady vicar and she popped in to see us today. We all had a good chat and when she said a prayer my wife broke down and cried her eyes out. She has never cried like this before although she is fully aware of the situation. She admitted she was a bit in denial hoping I would last a bit longer. She now accepts that she doesn't want to see me suffer anymore.
I really don't know what is best for my loved one, waking up one morning and finding me dead or having a couple of weeks to prepare for it. It's my birthday on 17th of this month and I might try and arrange to go that day in the hospice.
It's a horrible thought though that I will be able to walk into the hospice and get carried out.
Thank you for all your replies, it means a lot to me

4th February 2015, 20:03
Hi David, I have been thinking about you today as I'm sure a lot of other people have. So am pleased you have posted to us all. Your emotions must be all over the place, especially after seeing your wife so upset. We are all here for you and will be here for your wife also if she needs us. Keep posting as long as,you feel up to it. Many Hugs to you both and God Bless. X

5th February 2015, 02:00
Been thinking of you as well David. Your on path everyone of us will eventually have to take. Your doing it with such amazing grace, I feel honored and humble that you shared this. Continued love and comfort goes out to you.


Night walker
5th February 2015, 08:06
Hello David,

My thoughts are also with you. I thank you for your courage to speak out on this and for being so open and honest about your feelings. Best wishes to you and your family with whatever you decide to do and we are all here for you with open arms, hearts and minds.
Your photos are very beautiful and I hope they are in all of your dreams.

Sylv x

5th February 2015, 11:32
Hi David
I have read your thread and admired your honesty and bravery
I watch my Sharyn struggling and her quality of life is nil!
She thinks she is a burden and has asked me to help her end this misery.
I am human and cannot kill the one person I love, but I also understand her angst
The decision is yours and yours alone, so long as you are on the forum Sharyn and I will be here for you
Dave and his smiling Sharyn x

5th February 2015, 14:29
This thread of yours, David has been heartrending. I have read and reread the replies from so many of us and it is so wonderful to know that so many people care so much about you and the decisions you are facing. None of us are a world away from facing the inevitable, are we? You are in my thoughts and prayers so often these days. Much love Joycie xx

5th February 2015, 19:32
I agree with Joycie. I have never been so speechless after reading a post, yet so determined to reply. You are so very, very brave and dignified. Your words are humbling. What a difficult position to be in and what a dignified and courageous person you are, and the strength radiates from your profile picture. I do believe, from what I have read, that a peaceful end is very possible, you needn't be gasping for breath. Clearly I have nothing of note to add but wanted to thank you for your post and I agree with the others that you are truly a brave person and you are in my thoughts: I pray that you and your family have peace. Much love David.

Jenny xxx

6th February 2015, 10:54

You are a truly special person with a highly compassionate way of attending to the very sensitive issues of the end of life. In posting your thoughts you have made us think deeply providing the re-assurance that we are not alone and thank you.
For me your posts have been the most memorable since joining the club they are frank, caring and dignified.
Our thoughts remain with you and your wife for the peace you so very much deserve.


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