I have been posting since my husband was diagnosed with MSA in 2021. He passed away peacefully yesterday. There was no sudden event, no obvious infection, just a steady decline that finally put him to sleep. He did not experience much pain during the years after diagnosis. He just weakened bit by bit until he could no longer manage the strength to sit up.
We were fortunate to have a primary care doctor and a movement disorder specialist who both agreed that Hospice would be helpful seven months ago. For those who are struggling with that decision, for us, it was an enormous help. We no longer struggled with going to the ER every time there was a UTI or blood pressure issues that caused fainting or delirium. Hospice helped us accept that there was no effective treatment or cure so the goal was comfort. He died at home, with family by his side, just as he wanted.
I've been posting under the names (Ruffner/Anovis) and I thank you all for the support that you have given me the last three years. This forum was more helpful to me than all other resources combined. I wish you well during your painful journey.
Ruffner/Anovis
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Anovis
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Hello, and so, so sorry for your loss. I know well the pain you are now going through and yet the relief that your husband is no longer suffering.
I don’t think there are the words to comfort you, other than knowing how much love and support you gave to your husband.
Thank you so much for your kind words about this forum. Those of us who have been here from the start always wanted it to be a place where those affected by MSA could share experiences, ideas, feelings, encouragement and grief with those in a similar position.
You now need to give yourself some time and if you feel able, hopefully you will still contribute from time to time.
I am really grateful to you for taking the time to share with the forum so soon. Your husband’s passing sounds in many ways the peaceful closure that those of us struggling with this undignified illness hope for at the end.
Thank you too for the wise words of advice about hospice care. I must confess to being both frightened of and reassured by the prospect and hearing about the help it gave you both and the fact that your husband could still come home at the end helped a great deal.
My thoughts are with you in your loss and do look after yourself now. Gill x
So sorry to read your post but I am glad that there was peace too xx That’s all we can hope for xx I hope & pray for peacefulness for my Dad after all he has been through xx ❤️
So sorry to hear that., but really glad he was able to be at home with loved ones around. He is at peace now and I hope you too find peace in time as you grieve. xxx
I'm so sorry to hear of your husband's passing. I can't say a lot more than has been said but I do agree with you that a hospice isn't something to be scared of, all they want to do is make your passing as smooth as possible. I'm kind of half way through this nightmare but come that time when I need specialised help I wouldn't think twice about having help from a hospice. We have a great little hospice in Dunoon, it's like a little community. God bless you and your husband.
my wife passed away in june t o M S A . she was diagnosed in 2021. So i understand your pain its a horrible decease and broke my heart to see her gradually lose her abilities. i send you love and my condolences for your loss. Andrew
Thank you all for caring enough to send condolences to someone you have never met. I plan to stick around for a while if for no other reason than to get a laugh from the weekly chuckles.
Sophie, Yes, watching your spouse lose everything, bit by bit, with no treatment and no hope is so difficult. One of my husband's last words were "please help me, I can't do this on my own." I can't get that out of my mind and hope that I was able to give me some comfort by staying by his side. Thank you and everyone else on this forum who provided advice and support during these difficult three years.
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