Hello everyone, I have been on this journey with my wife now since 2016. She is, or would have been 60 on the 22nd of this month. I’m writing this note now while I am still able to. She is lying in her bed gasping for her next breath while I hold her hand waiting for that final moment. She is on high doses of drugs in her automatic pump so she has no pain. I can barely make out her words asking to die, I just want it to be over, please look after the dogs. Regretfully despite all efforts and help from everyone and specialist staff she has lost her gallant fight against this terrible disease. MSA has managed to destroy both of our life’s. We are certainly not the first and I can guarantee we won’t be the last. If only this country had assisted dying.
I know I would not be able to write this tomorrow so I’m making the effort while she is still hanging on. Thank you everyone for your past help and kind instruction. You have all made this terrible journey just that little bit easier for us for which you truly have my most sincere thanks. I would just like to add special thanks to the MSA trust whom have seen an absolute brick. To everyone out there with this dreadful disease I wholly recommend you make contact with the trust.
Time to sign off now, take care and look after each other.
Written by
Oliverwindsor
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Hello Oliver. Words are useless at times like now. All I can say is I’m thinking of you and so understand your thoughts. The moment you are living through, as I write this, is the one we all dread but know may be around the corner.
I wish you peace and may the memories of times gone by keep you strong.
My thoughts are with you and your family at this time. I’m glad that your wife had you with her at the end and that it was pain free. It sounds as if her death perhaps had some of the dignity that we MSA sufferers inevitably lose in life.
I heartily endorse your thoughts on assisted dying. It might not have come as soon as your wife would have wished, but she is free now and you must find a way to care for and prioritise yourself. Be strong. Gill
I am so very sorry for you and your wife. It is a terrible disease and the annihilation it wreaks is unforgivable . It is awful that it can be good that her time has passed but if she has been freed from the pain and distress MSA brings, how can it not be. I hope you can now find some peace and comfort.
The crime associated with assisted dying is we don't have it. When nurses visit and cry over the state of your loved one, or apologise after death because they weren't allowed to do more, our laws are wrong.
My heart goes out to you at this sad time but you live in the certainty that your wife is at peace now and dwell only on your happy memories of her.I lost my husband on 24th of February 2024 after nearly six years of the first signs of the heartache to come.
He wanted to be at home and I managed to achieve that for him.
Can't say we had much help though, specialist Dr Shaw couldn't even pick up the phone to ask how David was after I informed his secretary that he became bed bound and hardly eating on the 4th January 2024.
We didn't have to use the just incase meds and thankfully David passed peacefully in his sleep. District nurses were the most helpful to us as he had multiple catheter problems but all in all I have been very much left with no faith in the NHS.
I only hope in the future that much more information is sought out by the medical professionals who actually deal with people who suffer this terrible disease.
Again my heartfelt condolences to you and your family.
Yes I agree I didn’t have the best experience with the NHS it is broken wish I could have known more about what he was going through the last year as just slept and hardly ate for periods up to 4/5 days x
Dear Oliver. I hope you are doing ok this morning, my heart goes out to you. I too lost my husband 12 weeks ago and the feeling is intense after being a constant carer for so many years. You will have mixed emotions of grief and relief. Grief that you ache so much to just hold your wife in your arms again one more time, and relief that she is at last free of this dreadful disease and the pain and hurt it causes.
I am just starting to remember the bad times, as I put them all out my mind when my husband died, as I just wanted to remember the good times. I think that helped, as the bad memories do not seem as intense as I try to balance them with lovely memories.
I realise it is all so very fresh with you, but you must look out for yourself. There will be a huge hole in your heart and life, after devoting all your time to your beloved wife. But you must take comfort in the knowledge that she had you by her side throughout the long journey and you went above and beyond to help her. Nobody can want for anything more. You are her hero.
Although it doesn't feel like it now, you will get through this. Just take one day at a time. Take care
Think of you Oliver. My wife died 6 weeks ago, also aged 60. I take great comfort in knowing that my wife's struggle with MSA is over, and as the weeks pass I find I am remembering the good times more & more. She will always be in your heart.
There are no words but please take comfort in the fact it it such a complex disease that we all struggled to understand till you both meet again take care x
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The saddest of times
Since when does MSA have a silent A in its title?
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