It is with regret that I have to tell that Ian died earlier today. Quite unexpected following a choking attack yesterday at dinner. He was enjoying a yoghurt, something made us both laugh, food regurgitated and he lost consciousness almost immediately.
We are very lucky to have Rennie Grove hospice at Home around here and when I called them they virtually took over.
In a way I am relieved, no more slow deterioration, was up in his wheelchair every day, reading the paper and then his Kindle, eating well and enjoying the family. I realise it could have been so much worse.
My love goes out to all MSA folks and their carers. No more odd dreams now!
Jenny
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Courgettegrower
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Dear Jenny, I am so sorry to hear this very sad news. As you say, Ian is now at peace and free of MSA. It sounds like you had a lovely relationship and those memories will help to sustain you through the weeks ahead.
It was so great that you had the support of hospice at home. The hospice services are so helpful and knowledgable in my experience. They also provide their care with compassion and understanding.
I hope you will let us know how you are doing from time to time. Sending love and strength to you and all of those with MSA and their family, carers and friends.
What a dreadful shock for you, I just couldn’t take it in when I first read this. I’m so, so sorry. I know you’ve been through such a lot recently as you say it could have been so much worse.
Now is the time to take a deep breath and give some time for yourself albeit I know how difficult that’s going to be at first.
Hang on to those happy memories and remember there’s so many of us here and in the 4Counties support group who would want you to stay in touch.
I am so sorry to hear this. It is so much of a shock when you will have been holding yourself up for the long haul, hoping that you will have the stamina to keep going however long the journey. You have done a great job, been Ian’s best advocate and loved and supported him.
I hope that you will be able to grieve in whatever way is the most healthy for you, I am sure that the hospice will have support for you if you want it.
My Geoff’s death was sudden, sitting up in his reclining chair one Saturday morning, however he was farther along the disability journey than Ian, but I know that feeling of being grateful that there was no more deterioration to go through. Remember him now as the man before MSA.
I'm so sorry to hear this, it is lovely to hear that the hospice were able to support you, they really are there when we need them. As others have said take the support for you in the coming days and weeks. We're all here if you need us.
Hi, I’m so sorry to hear about your loss. Although it’s a little more cheerful to hear that you were both laughing when you lost ian. I don’t know either of you unfortunately but I hope you are ok. I can’t begin to imagine how you feel. I hope we can all end this journey when the time comes as cheerful as you both must of been before the abrupt end. I hope he’s resting now and no awaiting the inevitable. I’m hope you are holding your memories of your time together close to get you through what must be such a difficult time. God bless 🙏🏻
JennySo sorry to hear about your loss. At least you don't have to watch anymore deterioration but it must be a huge shock. Be kind to yourself and remember the good times. Sending love and hugs, Helen XXX 😘🤗😘🤗
So very sorry to hear about Ian. It sounds like it was mercifully swift for him but that can make it tougher for you. Do whatever is right for you. Grieving a partner is devastating and takes a very long time - only those who have been there will have any sense of what you're going through. But you are not alone and you will find comfort comes from the most surprising people and places. xx
I am so sorry to hear that another good man has gone. It is wonderful that he was laughing up until the end. Try to hang onto the good times and all the laughter you must have shared.Thinking of you.
So sorry to hear of Ian's passing. Having just had the 1st anniversary of my husband's death, which was sudden but not unexpected... I cling to all of the memories we shared and continue to miss him everyday. But as you said I am relieved that he is no longer suffering.Hold on to your memories and take time for yourself. Your grief is your journey and is unique to you.
My husband passed away in October. Very suddenly unexpected. Only one year after diagnosis of Msa c . I was talking to him a hour before . Waiting for nurses to check his pressure sores . As he could not walk st all . I read on here people in there 5/7th year and beyond. My self and our two young sons . Are lost and heartbroken. Dont understand. Why he was taken so soon . Has anyone else experience d this ?
My understanding is that when the diagnosis is given they don’t usually give any guidelines as to how far along the MSA is. Reading up on MSA. It looks like we could be in the later stages, but hoping we aren’t. I think MSA is so unpredictable.
Oh no! My thoughts and prayers are with you and your family. You were able to spend lots of quality time with Ian. There'll be lots of wonderful memories of healthier times. Big hugs xx
Thanks to everyone for their replies, they are very comforting. Ian wanted to donate brain tissue for research and this has been done today. Jill Lyons, Msa trust nurse set this in motion for us and we are very grateful to her. A little good to come out of this tough time.
We do have lovely memories and reminiscing has already begun.
Jenny - sorry to hear that. I was at this place 11 months ago and I fully understand where you are now. <<<hugs>>> take care and take things at your own speed. No right or wrong way.
Sending you love at this very sad time. Having lost my Nan a few weeks ago I completely understand what your going through. Me and my family still can’t get our heads around the fact we will never see her again, even though we know she’s in a better place xx
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