11 days and counting

[Sawa]

It's been 11 days now since J went onto morphine and last had anything to eat or drink. He's at home, where he wanted to be, and being kept comfortable, but the waiting is terrible. In the beginning we were happy that we had some time with him to say goodbye. His son flew back from the US, and had a few days with him when he was still responsive. But that was 6 days ago, and now it's just really hard to watch. He is unbelievably thin, and his body is starting to break down. I had a sense of peace and serenity in the beginning that his struggle was nearly over and that we were abiding by his wishes. But that peace has evaporated under the stress of the last few days. I'm sure that the lack of sleep is contributing to the turmoil in my head and heart.

Every day the doctor is amazed that he is still with us. We've all told him that he can go and rest, and yet he just hangs in there. What an unbelievably strong man.

I wonder how much longer he can last, and how much longer I can keep watching and waiting. Has anyone else endured this kind of time? Please send us strength and peace for J.

[easterncedar]

Dear Sawa, I don't know what to say. it can be cruel, what a body can withstand. I send you love and hopes for peace. Ec

[Sawa in reply to easterncedar]

Thank you EC, your wishes gratefully received

[Patriciapmr]

Dear Sawa,

It was very similar for my Keith too, he hadn't eaten for 14 days or had any fluid for 7 days, the doctor told me you can last a long time without food and that without fluid he would probably live for another 2 days.

My heart goes out to you as I understand exactly what you're going through, Keith was on morphine and he was really thin, it's heartbreaking I know but I feel I have to tell you this, it doesn't matter how you think you are prepared for his loss, when it actually happens it hits you like a sledge hammer, the grief is overwhelming and is still with me 3 weeks later!

All I can say is treasure every moment, I hardly left Keith's side for the final days and now I'm happy I did,

I'm thinking of you, stay strong....

Love and supportive hugs....Pat xx

[easterncedar in reply to Patriciapmr]

Bless you, Pat. I send you hugs, too.

[Patriciapmr]

Sorry I meant to say that Keith's passing was very peaceful and painfree thank goodness....xx

[Sawa in reply to Patriciapmr]

Thank you Pat. I so appreciate your message. Nothing could have prepared me for this. Like you, I have been with him as much as I can be over this time. I'm so tired and need to sleep but worried that I need to stay awake and with him in case anything happens. One hour at a time, one day at a time.

[abirke in reply to Sawa]

I know , I am so exhausted....

[Heady]

Hi Sawa, Steve was lucky. He was only in this stage for about four days. But I still echo what Pat has said. I know it's hard, but treasure every single moment. Sleep cuddled up to him, do anything you need to, to get through the day. Steve died over the Christmas period, so we celebrated around him. Opened presents, drank champagne, had a few laughs. He finally passed on the 28th, at complete peace and in no pain. It was a very special time. Try not to get stressed out, this is the most natural thing in the world. It has given me enormous comfort, seeing Steve pass so peacefully. It will you as well, if you let it.

Sending very large hug and much love.

Lots of love

Anne

[Sawa in reply to Heady]

Thank you Anne. I know it's a blessing that we have him at home and that, of all the ways this PSP journey could have ended, this is probably as good an outcome as we could have wished. It's just wearing doing this for this long. I know, like every other thing PSP has thrown at us, we'll get through this. But wow, this takes a whole different kind of stamina.

I think of you often. I hope you're well and finding some peace and closure?

Hugs

Sharon

[Kevin_1]

Oh, Sawa

Its that waiting and watching the suffering day after day. It's tiring and its hard.

We do wish you strength form here.

Warmly

Liz and Kevin

[abirke]

I am sorry for your losing your man. There were several times when I thought I'd lose my husband but alas he is at home hardly breathing and mostly sleepin...he too is on morphine. and other end of life drugs...No matter how prepared we are we are never ready....I pray that you find solace in his way to pass on. God bless you and the work you've done for your husband.

AVB

[Sawa in reply to abirke]

So sorry you are having to go through this too. I do find peace that he is at home and we are abiding by his wishes, but my goodness, what this takes to go through is hard to describe. I know I'll look back one day and be proud of what we've done for him now, and for all these years. We should all be proud, medals for bravery deserved all around!

[Tillyhugs]

Oh bless you and your family. I know what you feel like my mum had a brain tumour and was unconscious for 12 days before she passed away.

Sending you love and prayers

[Sawa in reply to Tillyhugs]

Thank you Tilly hugs

[Marie_14]

Sawa

My husband died on Wednesday morning. I know exactly what you are going through. It is pure hell. However if he is not drinking then he hasn't got long. God bless you both.

The tiredness is awful. I can't sleep ever since. I sleep for two hours then wake up! No doubt I will sleep all day one of these days but can't yet!

So just know he is on the last few steps of this journey now. Tell him you love him and hold his hand. You will always remember that.

Marie x