Well, after 14 days without any sustenance, Jonathan passed away quietly at home on Sunday afternoon. The doctor was amazed that he held on as long as he did, as were we all. I'm proud of the fact that we kept him at home, as I promised him, until the very end. His last 2 weeks were very peaceful. Everyone had a chance to come and spend time with him to say goodbye. My Mom, his son and I were with him every day. Someone was always in the room with him, and we got a lot of time to hold his hand, talk about everything, cuddle up to him and sometimes just have a little nap beside him.
I have no regrets. We cared for him as well as we could, and I loved him completely. It's not a tragedy that he died; the tragedy is that he got sick in the first place. We never stopped living life, even though it became more limited. He gave me so much over the years, and taught us all how to be strong and kind and dignified under awful circumstances.
It may sound strange, but he had a good death. There was no infection, no pain, no struggle. Just a slow shutting down once his body had had enough. Having gone through this with him, I don't fear death. In fact, I would count myself lucky to pass one day like he did, at home, surrounded by loved ones. The waiting at the end was tough, but in retrospect now, no worse than living with this disease every day for so long.
Thank you to all of you for just being there. I never posted much, but read all the posts. I laughed and cried with all of you. Besides the fantastic advice, it helped so much knowing we were all going through this together.
I'll pop into the forum now and then, as I'd like to help anyone still coping with PSP as much as I can.
Love you all!
Sharon xxx
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Hi Sharon,. I am really sorry to hear that Jonathan has passed away. May he rest in peace finally free from this evil disease.
From my own experience and what others have said, PSP's final act to our loved ones is a kind one. You describe Jonathan's death, just the same as Steve's was, peaceful, dignified and most important pain free. We too, got to say our goodbyes, spend time cuddling and yes, even sleeping with him. I felt I was his wife again, for those few precious days. This has given me enormous comfort, I hope it will you as well.
Now is your time. Let's others do as much as they can for you. No descions have to be made today, or even tomorrow. Grief is a very personal thing, the proper way to do it, is YOUR way, whatever that may be and in your own time.
Remember we are still here for you. Unfortunately there are a lot on the site, who know exactly how you are feeling at the moment. Use us, either publicly or privately. Just sharing our feelings and emotions, makes it not quite so scary or abnormal.
Treasure that numb bubble, that I suspect you are in at the moment, it doesn't last that long.
Hi Sharon, I totally understand the good death you mentioned as it mirrored the passing of my darling. I think it does make it easier to cope afterwards knowing you all did everything you could to make this awful condition as bearable as possible and giving him his wish to die at home with his friends and family able to say goodbye.
The next few weeks will be strange with the things that have to be done but I am sure you will all soon discover that life after PSP is for living and making the most of every day.
Jonathan is at peace and I pray your mom and all the family will also know peace and joy in the coming weeks.
As death should be. We all come into this world and will all depart and my hope for all is that transition should be as beautiful and full of grace as your husband's. He has been coping for so long with PSP, it is now time for him to be at peace. My sincere condolences to you.
I am so sorry to hear that Jonathan has passed away. It sounds as though he had a lovely death however. Nobody can ask for more than that?
Please stay in the group as so many need help and guidance. I read all the posts although I don't reply to all.
We have kind of arranged Garry's funeral. It will be on the 20th March at 2pm followed by cremation at 3.20pm. It is such a long wait. However the main things has been done.
Have totally forgotten for the 2nd day to go to the Cemetery to pick a plot. I want his ashes buried and then one day I will join him. So might have to get hold of my son again tomorrow! Such a lot to do it's mind blowing.
Sharon so sorry for your loss, it is so nice to know that so many of loved ones on this site passed away without pain and with the people they loved, I hope when George's time comes we can have the same passing as so many have had. Big hugs to you all Yvonne xxxxx
We are arranging Jonathan's service for this Sunday although the cremation will take place afterwards. It does put a little pressure on us to have everything done, but I feel that we need some closure sooner rather than later.
I hope you have people helping and supporting you. You'll get through it. I feel like my brain's in a bit of a fog, so good thing I have people keeping me going right now or I might end up going out in my Pyjamas!
Where do you live? I ask because I am amazed your funeral is taking place so quickly. It is not from choice that Garry's funeral won't be until 20th March. I am used to funerals taking place very quickly but there is something wrong when you have to wait almost a month? I have heard if someone in Scotland having to wait 6 weeks.
Glad you are able to have your funeral so soon though.
I don't know what I am doing or even talking about half the time! A very weird feeling?
Marie, I live in South Africa. It's pretty much the norm here to do things this quickly. The paperwork is still being processed but that will not affect our service.
It sounds strange to me that you need to wait so long where you are. Do you need to wait for documentation or is it a case of waiting for a time to be booked?
There doesn't appear to be the capacity here in the UK. Plus everyone has a piece of paper you have to get to pass onto the next person! Or so it seems to me. I was raised in Ireland and my brother and I have arranged two funerals there. Everything was so easy. My Mother and my Aunt were buried in 2 days! The Undertaker just does everything. Here it is meant to be that way but not what I am finding.
The priest we were using has been told by the priest at the church we were using, he is not happy! We don't know the second priest. It has now caused so many problems as the Crematorium is near the first church as is the hotel we have booked! We have told lots of people where the funeral will be but now I don't know where it will be held. Meanwhile priest number one has gone AWOL and so has the Undertaker! So have my two kids! Seems they want the day off. Talk about a mess?
Oh Marie, I don't know whether to laugh or cry for you! The last thing you need now is to have to deal with everyone else's issues, when I'm sure you are dealing with so much yourself. Do you have someone who can 'run interference' for you? I have an older sister who loves being bossy and in charge, so I've written down what I want to get done and have let her loose on everyone.
The undertaker is taking care of all the paperwork for us, so probably a lot like you've experienced in Ireland. I can't believe it is so difficult to arrange in the UK! Jonathan is (was?) English, and I am planning on taking his ashes back to the UK later this year. I hope it's not going to be really difficult to arrange.
I so understand your venue worries. I had a venue, but the number of people coming has just kept climbing, and I have had to find another venue! Luckily my bossy sister had a good idea, and I have managed to book a really lovely chapel and venue for tea, which I know Jonathan would like. Fingers crossed we don't have another venue problem!
I so feel for you and what you are going through. Just do what you can, and try to delegate as much as possible. And vent, that always helps.
Thank you. Church number one back on track. Priest number one is away but back tomorrow night! So hopefully over the weekend can sort prayers and hymns out. Beginning to see the woods now. Unless I fall over a great big log?!
What a lovely touching post Sharon and you should be pleased and proud that jonathan was able to spend his final days at home surrounded by people who loved and cared about him. Now is the time to think about you, I sure getting through the next few days and weeks will be difficult but J and you are free of this terrible disease, one that does its very best to rob you of all that is precious.
I just reread your post. What a wonderful perspective you have. Bruce too was surrounded by his family we talked to him and each other about life in the past and what my kids will be doing soon. Dad (my husband Bruce) got to hear everything and everyone said their good byes with a song as we sang soem of his old ones that he led at church 'with' him. To me it was the best funeral or wake ever, getting to be present and hear all the nice things soemone had to say about you! thats how I want to go.....no it's not but like you said knowing that everyone is celebrating and not in too much shock when I go.....that's not so bad.....
I am having a hard time now that he is gone....I need to get a job and I feel very empty and depleted.....
Your post has made me reread the chain and, my goodness, what memories it has stirred. 2 months later, I can easily transport myself back into our bedroom for those final days.
Things have surprisingly reverted back to 'another' normal again. I worked throughout J's long illness and care, so I think that has helped to keep me busy and thinking of things besides PSP. However, I have rediscovered a bit of a social life. Nothing big, but being able to meet someone for coffee or join my family for weekly Park Runs, which I wasn't able to do before. The biggest surprise is how much free time I suddenly have! I didn't realise over the years how much J's care had become all consuming.
So life continues. I feel normal and fine, and sometimes PSP feels like a distant dream. But I miss my wonderful husband very much, and I find myself remembering him more as he was when he was well. Sometimes I can talk about him and other times the thought of him brings tears to my eyes and a squeeze in my chest. But I know it's because I love him still, and that makes me glad.
I hope you find work, or something to occupy your time and your mind. Do you have any prospects or ideas on that side? We have a wonderful business here called Employ My Mom, which finds part time work for women who have been out of the workforce for a time. At last, someone recognises how much we have to, and can, do!
Hope you are ok otherwise, please let me know how you're getting in.
I love your agency where you live, Employ My Mom....I'll have to look into if it's only local or a national idea....certainly go national....lots of moms out there , both old and new, who need a job. ebbing and flowing myself on the idea of working......I spent the first 10 years of our marriage staying at home with the kids...14 years teaching and the last 4 staying home with B....which leaves out 3 years....of our marriage I think that must've been the subbing, aiding, and library-ing I did
I also love that you are getting on rather smoothly; I wish for your new normal to be a happy , continuous new journey with good memories and love not lost, only sent on....
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Goodbye
Goodbye
Lovely husband gone but not forgotten 
Gratefulness for the love and support this group has for each other. 
I love you Dad
