These are the last semi-coherent words Ian spoke to the GP a couple of days before he passed away in his sleep in the early hours of Friday morning.
He had developed aspiration pneumonia a month earlier and the hospital doctor expected him to deteriorate, but, in true Ian style, he made "a remarkably rapid recovery" and was discharged 11 days later! He enjoyed a slight recuperation, but was clearly having problems swallowing, so we lived on soup and yogurts. He had made the decision to not have a PEG, but in fact it was never something discussed with the specialists in length because on Thursday morning I woke to find his paralysis was complete, His eyes were fixed, his lids couldn't open despite trying, he couldn't move his mouth or his tongue and there was no response in his hands.
The ambulance crew came out and put him on a drip because all of his vital signs were normal. The doctor with them said that he could remain in this state for possibly weeks because he was stable. This was the Thursday afternoon. However, he was shown great mercy, and after a few moments of light breathing in the early hours of the next morning he took one deep breath and passed over.
What can I say? He died as valiantly as he had lived. He had run his course and knew it!
I cannot thank you all enough in this community for the amazing support you have been to me over the last years. The information and advice has been a rock to us both and I feel I have made true friends. I remember the reunion in London several years ago when I was cheered for being the one who had travelled the farthest (southern Spain)! And your honest and kind words to me have been a true light in a dark place.
I'll still visit the site, but I think I may need a break for a while.
May God bless you all.
Juliet
Written by
JCRy
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Juliet I am so sorry your lovely Ian has passed away, my sincere condolences. As you say he was shown great mercy and released to a better place and whole again. May God bless you and give you strength for the days ahead.
I can understand you taking a break from the forum but I look forward to hearing from you again when you are ready.
It was a pleasure to have met you in London and I count you as a dear friend. Take care.
So sorry Juliet. I think your words are so true. I also felt Chris knew he had " run his course ".It was lovely to see you in London. I remember your vitality and know you will survive but I also know it is hard and you must allow yourself to acknowledge the despair. Hope to meet again some day. Love from Jean xxx
So sorry to read your post. You have both been so brave. This is one of the cruellest conditions. Please take solace in that Ian is no longer suffering.
Be kind to yourself, mourning is itself a strange unpredictable condition, as I am finding.
So sorry for your loss,it's an awful Illness & you can take some comfort your husband is now free from it & it's so hard to watch your loved one deteriorate. Take care. x
Dear Juliet, I am so sorry that Ian’s journey is over. May he rest in peace, finally free from this evil disease. Time to practice your hard learnt skills of caring on yourself. Do only the things you have to do, make only the decisions you need to, most can wait until tomorrow or next month. Grief is very tiring, first though, you have to recover from the physical side of caring, before even trying to make sense of what has happened. I am with you all the way, my Mum died on Sunday, desperately trying to take my own advice, so I know how hard it is to get carried away with trying to do everything at once.Sending big hug and much love
I am so sorry to hear about Ian, it sounds as though he went on his own terms, which is a good thing.Look after yourself, it takes a while for things to come back together but they will. Its time for you, going forwards.
So sorry for your loss . I’m only newish to this site so didn’t know your fabulous husband . You seem to be a remarkable couple . Take care and God bless you both x
I am so sorry for your loss. Ian sounds like a helluva guy and you must be heartbroken to have lost him. Be content to know that he did not spend a long and agonizing time in the end stage. My bride is 4 years post-diagnosis. 7 to 8 years since symptoms started. The disease is taking a terrible toll on her and she is in near constant pain. Her pain...it is the one thing I cannot abide. I find myself so conflicted; I don't want her to suffer and I don't want to lose her. This really is a horrible disease.
You have been a great support to your husband. Now be the same for yourself. Be good to yourself. YOU HAVE EARNED IT.
Dear Juliet, I am sorry that I have not replied sooner but life has been a bit busy with a 16 year old dog that I have adopted as her owner died and she had to have an op so I did not get to look at emails. I was so very sorry to hear about Ian but glad to hear that he had a peaceful end and that the time was right for him. He certainly was a fighter.Now it is going to be looking after yourself. Are any of your family able to be with you? Will you stay in Spain or return to the UK? I too remember that lovely meet up in London and sitting with you having a good old natter. I hope that one day we will be able to do that again. In the meantime a great big virtual hug and lots of love. You have my email so if you want to contact me at any time I am here to listen.
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You are never prepared for it 😢
Our PSP Journey is Over
Dealing with the loss of my father
