Hospice and coming off ventilator

[Heather R]

The Thursday before last I saw the consultant from my local hospice,, and asked to be admitted to the hospice to come off my ventilator. She said she would put me on the waiting list , and my daughter and I got the impression that I was likely to be admitted sometime during last week. However I was not, and the chaplain visited yesterday. He said that there was staff shortage because of sickness, and also some unease amongst nurses about helping me to come off my ventilator.
I am not totally dependent on the ventilator but find it increasingly difficult to do anything without it. I am feeling pretty weak and tired.
I have read about staff finding it ethically questionable, but had somehow not expected it at this hospice. The chaplain said there was going to be a meeting on Monday about it, and that it was a question of education. , I just wondered if the Mnda would help. It’s made me feel unwelcome at the hospice at least.
Thank you

[SAMMY88]

I'm so sorry you find yourself in this predicament. Hugs and kisses to you Heather 😘 xxx

Hopefully someone with some experience can help you , its not right to leave you like this after making that heart wrenching discussion xx

[Heather R]

SAMMY88 thanks xx

[Heather R]

I don’t at all feel guilty about what I am doing, except possibly for not being able to relish life more. Ethically I would feel more concerned that I am using far more of the earth’s resources than is my fair share,or my due for a sustainable planet, and I have already lived 75 years . Without my ventilator and peg, I would have been dead a while ago. X

[Bowler]

Heather, it sounds as if you are totally at peace with your decision. You are one brave lady who deserves to maintain the ultimate control, God knows this horrendous disease takes away so much.

Much love

[Ellie]

Heather R That's disappointing to hear, Heather, I'm sure that it was a much considered decision so to be unsupported by the hospice is, as I said, disappointing.

There usually does come a time in severe respiratory failure when NIV use is futile - perhaps you are at that stage?? I wonder if your respiratory team could offer guidance.

If your Palliative Care Nurses are hospice based/affiliated, it also begs the question of what support would be provided in your home should you want to do the same at home.

Anyhoo, I am sending much love and support to you at this very difficult time, and hope MND Connect can help you. xx

[MMG]

Heather R Sending you much love and hugs regarding your very brave decision. I hope that the hospice support you with this. It is not the time for your wishes not to be considered. I don't know what to say under the circumstances but I hope you go the way you want and for it to be peaceful, surrounded by those that you love xxxxxxxx

[Tabbycat]

Heather R sending my support also. Ellie has managed to express my thoughts better than I could (thanks Ellie).

[Claireflo]

Heather R Sorry to hear of the difficulties you are facing having made your decision. I hope you get the support you deserve and wish you and your family peace and strength x

[Piglet]

Heather R as said above sorry your having to go through this from the hospice,but I feel that it is good they are having a meeting to ensure that everything is ethical and in your best interest. I wish you all the best wishes. Xx

[Hope]

Heather R I am so sorry you are in this situation. I was told at diagnosis that I had ‘choices’ re ventilation. It is the one thing that keeps me assured while I endure this awful disease. Sending love to you and hope your wishes are fulfilled. xx

[Zante]

Heather R. It's very difficult to try and find the right thing to say but I didn't want to not reply to your post.

I also find it hard to understand why a hospice wouldn't automatically respect a patients wishes given the inevitable outcome of mnd. Having choices is one of a handful of things left.

I wanted to say that I am thinking of you and hope that u can get the answers to your questions with regards to stopping niv as soon as possible if this is what you are ready for and choose to do. I admire your thoughts and wishes .

Best wishes from us all here. Xx

[Rosemary6NT]

Oh [email protected] that's so hard to hear. I was due to spend a week in my local hospice but left after two days as it was not set up for people with our needs. I have decided to manage my own death at home with the assistance of the hospice at home team. I am only a few months behind you on this. I wish the best possible journey and much love

[AngieCanuck]

Oh Heather, how disappointed I am with the hospice. You clearly spent a lot of consideration making such a heart wrenching decision, only to be told that people were uncomfortable. I wish they would put themselves in your shoes. Aren’t hospice nurses supposed to be comfortable with end of life? The hospices here in Canada are only available at end of life, and offer no respite care. I am sending you love and comfort and I know that I will miss you but we will meet one day in Heaven

[shelly21]

Heather my palliative care team discussed this with me and said community would come in and sort meds via drivers etc. I also I'm not at you stage but I wanted to know my options.

I do hope you get somewhere. Keep being brave x