We have reached end of life. Emergency meds are being used and Jon now has pneumonia. Day 3 of meds, day 2 of pneumonia and date 2 of hyoscine via a drip from the awful box!
Last night was relatively easy from the 3 previous nights.
I’m not sure what’s hardest, will today be the last or will tonight be the last????
Nebuliser, and suction in full use but mostly refusing the cough assist.
He’s a prisoner of his own body! He has so much to say but can’t control the tremor to work the iPad. How the man has not gone insane I really don’t know.
It’s our 1st wedding anniversary on 27th and I pray we make it
Family are starting their visits today which just makes me feel physically sick.
Sorry 😔
Written by
Kaye31
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My thoughts are with you. I lost my beloved Jackie at the beginning of April to MSA and pneumonia and so I know so well what you are going through. It would have been our 31st wedding anniversary two days ago.
Stay strong for yourself, hold hands and ignore everything else.
how are you doing..? After all the help and support you have given to others over the years I hope you can feel the support we are sending to you.
..and that it helps that we understand.
David's daughters are high performance autists and do not do empathy. i can understand that they wanted a private funeral...they live abroad and cant cope with strangers but to instruct the undertaker to keep it totally secret from his friends and his partner is unforgiveable. We only know it has taken place because the solicitor was prepared to admit that he had paid the bill.
my husband died 10 years ago and the things that comorted me most was knowing that i had been with him to th end, holding his hand and telling him how loved he was (they say hearing is the last sense to go) and the profound sense of relief that he was no longer suffering. If you talk gently to him you will not get a reply but you may get a slight twitch of a finger that tells you he is still aware that you are there helping him.
I'm so sorry Kay, and know how hard it is. My best friend passed with pneumonia in January , I'm still trying to find my feet after years of caring for her. Be kind to yourself and if you need to vent then vent.
So sorry to hear this, my heart goes out to you. Try to stay with him as much as you can, hold his hand and tell him how much you love him. It will bring you comfort to know that you were with him in his final hours and that he knew you were there, when he had to finally let go. That is irreplaceable.
so sorry that you have been cope with this soon in your relationship it isn’t fair! Take care of yourself and stay strong! Life goes on for you which is as hard for you as it is for Ian to let go , take care of yourself! Lots if love and thoughts Jane
I understand what you are going through, I lost Graham at the end of March. Just be with him, talk and hold his hand, let him know you are there. Just typing this is making me cry. My thoughts are with you x
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Anticipatory meds
Mum newly diagnosed with MSA-P and we are all struggling
In need of some support
Help!!
A retirement we couldn’t have imagined. 
