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Mich
1st January 2013, 21:49
Hi All

I would be so grateful for some advice on the end stages of MND.

My dad was diagnosed two years ago and progression over the last 6 months has been the quick, and the last month rapid. We are now at the point where all medications have been taken out, preparing for end of life, and now the only medications are through a syringe driver containing a sedative (Medazolam) and morphine. He is being cared for at home.

My dad is eating a minimal amount, spoonfuls of rice and a cup or two of tea a day. He is on the BIPAP 95% of the time. He has over the past few weeks been extremely agitated, and the sedative was introduced to help with this. However, he is constantly restless, even with increases in the sedative which is now up to a dose of 50 mls.

My dad is really suffering, it's awful for him and heartbreaking for the family to watch. Am I wrong to think that at this stage, with the inevitable on our doorstep, that he should be made to feel more restful and comfortable? Despite my calls to the hospice, who have authorised increases in the dose, when I have questioned the effectiveness of the sedative, they seem to think my dad is just strong willed. Maybe so, but I don't think he should be dying in such an uncomfortable state.

Any advice of any kind, or anyone else's experience of these late stages, I would be extremely grateful.

Mich

pete
1st January 2013, 22:53
Hello Mich,

So sorry to hear your Dads suffering , Life with MND isn't easy in anyway, so to expect better from the end stages of life , seems to be as unique as the disease is in all of us. There have been folk on the forum who have said it was peaceful at the end and others not so ,You would hope that everyone ended life as peaceful as possible, from my own experience of late , it really is down to the doctor and nurses who attend , it should be the same for everyone at that time when we need help it is available , I can only wish your Dad finds peace, as do you all.

Regards
Pete

Graham
2nd January 2013, 02:16
this is why we need the option of assisted suicide. give us dignity.

Robert
5th January 2013, 14:44
Update to right to die http://www.guardian.co.uk/uk/2013/jan/03/tony-nicklinson-family-right-appeal

Lolly
5th January 2013, 19:30
If you put him in the hospice, they'd take him off the bipap and he would fade quietly as the morphine depresses the respiratory System.

berdbrain
5th January 2013, 23:28
can they do that at home too Lolly? lots of people do not want to go into hospital or hospice.
X

Lolly
6th January 2013, 12:30
No I dont think so.

JONESY
6th January 2013, 12:35
Yes it can be done at home. When a person is close to death all unnecessary drugs can be stopped and drugs given to keep them comfortable.

Chris

pete
6th January 2013, 14:37
Hi Lolly,

At the risk of being insensitive , can I ask at what time was your mom given the peg and did they bother to ask ? Sorry but I think I would like to Know, will understand if do not wish to answer

Regards
Pete

Lolly
6th January 2013, 17:49
Mum was given a peg on Tuesday morning. By Wednesday mid morning she was in extreme pain which worsened all night they did NOT control the pain well until Thursday afternoon when we were told she was dying. she died in my arms with my dad at the bedside also. She just faded..... She ws 70


They say the worst experience in the world is loosing someone you love. It isn't. Watching then die is the worst.

pete
6th January 2013, 19:34
Lolly,

Thank you , It begs the Question as to why they put your mum through all that, and for what!. The old saying about Doctors mistakes, rings very True , And totally agree with your last comment , I have lost Quite few Folk over the Years,and you never forget !. It was 43years and I still see my mom passing away as it where yesterday

Pete

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