End has come

[GreenJo]

Hi - with a heavy heart tell you that TC died on Sunday 3rd March. We managed to keep him at home, as he wanted, and it was peaceful at the end. I know that it's difficult to know when the end will come so I will document how it was for us.TC deteriorated quite dramatically after Christmas. His stomach became very distended and his chest was full of fluid. The hospice nurse started a hyoscine driver for his secretions and we reduced his PEG feed by over 50%. He then stabilised for a few weeks. Fluid and secretions got worse again and Hospice nurse advised stopping PEG feeding totally. Again this was in full consultation with family and TC. By this stage he could only agree by eye blinks. Over the course of his last week he slept more and more. His skin began to change and have a waxy appearance and his expression also changed. On his final day his breathing was very bad, the district nurse came out and gave him a top up of hyoscine. His breathing was very laboured for a time but then became peaceful again. He was in no pain. We were all with him when he died.

He fought a long hard fight but he still had enjoyment in his life. He was a larger than life character and his legacy will live on.

[Gill-C]

I am so saddened to hear this news but, as an MSA sufferer, really wanted to tell you how much I appreciate your documentation of the ending process. It helps immensely. Thank you for your bravery at this time and, if you can bear it, do keep with the forum as you have so much knowledge to contribute. I am thinking of you and your family at this time. Gill x

[Whitefeather1]

I'm so sorry to hear your sad news and know how you're feeling. Take time for you now. Sending love . Caroline

[Derkie54]

Hello,

What sad news, our thoughts are with you at this time.

Thank you for explaining the latter stages.

Take care and look after yourself.

Regards

Derek

[esj20]

my thoughts are with you and your family

X

[Lassie1331]

Sorry for your loss. I can’t praise you enough for upholding his wishes to stay at home till the end. My husband has MSA and although has had symptoms for 8 years it’s only 3 years since a definite diagnosis. He has wanted his life to end since. We’re coping well so far as he can still weight bare and eats fairly well. I think if he became ill he would refuse to go to hospital. So far he’s had continuous UTIs and a chest infection. Also has said he will not accept peg feeding.

I appreciate your info about end of life as it is reassuring to know it can be peaceful.

[Monkeyfeet1]

I’m so very sorry for your loss xx