Hi, thank you all so much for your kind words. They have meant so much to me. I can't sleep, so I thought I would tell you how I am feeling, if you don't mind.
I know I, along with the rest of you, have been so frightened about what the end would look like. How I would cope making the awful final decisions.
I have never been in such a surreal world, it's so calm, busy with lots of people coming in and out, but I am not doing a thing. My daughter is taking care of all the medical staff. Our sons in law's have been cooking. We have managed to celebrate Christmas, not the way we planned, but we have done it. The tree lights have been put on every morning., we did presents, in our bedroom, with Steve. There has been lots of laughter, our two daughters, reminiscing their teenage years and singing him the naughty rugby songs he taught them. Steve has been drifting in and out, sleeping most of the time. He is not in any pain, having a regular shot of a calming drug, just to keep him comfortable and floating.
Of course it's heartbreaking and lots of tears are being shed. Finally, I am doing what I should have being doing all the time. Lying next to him, cuddling him, telling him I love him. Yes, I am frightened, but only for my future life. Not for the next few days. NannaB told me, for her, these were the most stress free days of the PSP journey. She is right. Once that decision not to start interfering with nature and let the body dictate, is made and accepting the situation, everything else falls into place. Honestly, making that choice, no that's wrong, there was no choice, no decision to be made. Steve's body did that for us.
It is hard, lying next to him, listening to his breathing, which at the moment is still quite strong. Not knowing when his last one will be. I'm sure it will become harder as the days go on. The sudden quietness, grips my stomach. The main thing, he is at peace and in no pain. We have plenty of drugs to make sure he stays this way, if needed.
I know I have been one of the first to criticise the medical profession, but it seems they do know how to look after a patient at the end of their lives. I did guess, a couple of days ago, this was getting close, when they were saying things like, "bless you" and taking an interest, finally of Steve's welfare. Now they have been brilliant. Yes, lots has gone wrong, drugs delivered to the wrong place, or not at all, but it doesn't seem to have mattered. There is only one thing that over rides everything, Steve's well being and keeping him at peace. Thankfully, we are now all on the same page.
This stage? For Steve and me, It's calm, very peaceful, none of the stress, I have been going through, for the past six years at least. In some crazy way, being now, at Christmas, is fine. All my family are around. Steve's daughter is home from the States, for Christmas. Nobody as work problems and there has been things to do.
Some might not approve of me drinking champagne this lunch time, but why not? I have had the most amazing time, being married to Steve. I want to celebrate that, whilst he is still around to know.
I know my next post will not be full of calm and peace, I just wanted you all to know, that for Steve at the moment, it is.
Lots of love
Heady/Anne
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Heady
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Lovely Anne, I am so pleased you are experiencing this oasis of calm. You are so right in everything you say. Blessings to you both and have another glass of champagne tomorrow if you feel like it. 🎄💞 x
Anne, With tears in my eyes I read your beautiful words. I can't get ready to hear your final words. It hurts to much, Glad it is calm and peaceful and no pain. I can't get Don to even give me a hug, which would mean the world to me. Just hold Steve in your loving arms and hug him for me and yourself.
Heady....pleased you're not awake & have been in touch - I've been thinking about you today. I'm so pleased that you have had a peaceful Christmas with your family despite the dreadful heartbreak. sending love & strength & more peace to you xxx
I have been thinking of you through the day. Thanks for taking the time to tell us how you are doing. Champagne, cuddling, family and medical support. I'm glad to know you have all these things. Love from over here, ec
I drank good wine and have been crying for you and for us. But it was a good Christmas. Please keep posting, you always seem to say what we all want to say and you do it so eloquently.
Thank you so much for sharing your insight. I am so glad you have help and family around.
For myself, I feel I have been grieving this whole time since my husband's diagnosis. Little by little as I realize what we are losing and won't be able to do together.
I hope for some of your peace when our time comes.
So very glad you had some loving time with Steve today. You deserve the champagne!
Such a beautifully written post at such a sad time, bought tears to my eyes. I'm glad for you and your family that it is peaceful, that is not how I imagined it would be. I don't know what else I can say, just I'm thinking of you and we are all on the same road. Xx
You are a wonderful wife, friend. Enjoy your last bit of time. I'm sure as many on this site will agree you have done your best . May it be a peaceful passing .
Thank you for taking the time to post . I'm pretty sure that I was not the only one thinking of you and Steve.
Take care of yourself and I would like to think that our love ones go out on there terms.
My guy is running a 101.5 don't know what that is in metric he;s never had a fever. and I am exhausted.
But to you I extend whatever stength and celebration o f love I have for you and Steve.
Drs know better the process of death than they do of healing rarities such as PSP. not a judgement just a truism. I extend calm and peace to you.....and please know that this may be a longer process than you expect. Goodnight
Hi there abirke.... I have just read your post and I am a wee bit worried about your other half - hopefully his temperature is more normal now???!! If not, I would be contacting the medical people to come and review him asap. The last thing you need is to have him come down with a chest infection etc.
Take care and know that we are all thinking of you during this difficult time.
Thank you for your concern Bindileech. Yes his temp is back to normal. We got home from our kids hosting Christmas (greatest christmas gift ever) and he said that's when he started feeling yucky....I found this out after about 4 hours when I put him to bed and he was burning up (shame on me for not touching him sooner ....I was pooped out on couch!)
I don't know why his temp did that but all is fine now...whew!
Anne I too have been thinking of you over the Christmas, also of Tim and Tokki. Also of course everybody else here.
Drink all the champagne you can! Why shouldn't you celebrate your happy marriage! i hope the face that you've still 'done' Christmas will be a comfort too you, and the fact that your fine about it, well is there ever a good time?
Thank you for sharing your experiences, which cannot have been easy, but your words have given me a huge amount of comfort. I am sure I am not alone in wondering what will the end of PSP look like for our family and I have found your words reassuring.
I hope (not sure that is the best word ) that Steve will slip away quietly and you will have all your family around you both.
Oh Anne, my thoughts and prayers are with you all. May that feeling of peace and calm stay, so when you finally say goodbye, you will be left with these memories.
For me, the worst times in the last 6 years are already fading memories and this Christmas we have been able to laugh and reminisce about the good times.
Make the most of the close contact Anne, another memory to cherish......and enjoy the champagne, I have, although I did feel a bit "naughty" clinking glasses with my son before mid day yesterday.
Hi Anne. Wonderful, these are the moments you will remember always and the hard times spent with PSP will gradually fade from your memory. Lots of love Maddy Xx
Heady I've been thinking about you and Steve constantly since your last post so am pleased to wake up and read this today!
I'm pleased that Steve is not in pain and everything is currently stress free. You darling just take things easy and spend as much precious time as you can now with Steve.
I'm sending you buckets of strength and loads and loads of love.
Heady as nannab you are an inspiration and have helped me enormously over the past 14 months, without your continual input I'd have been in heaps of trouble, so thanking you doesn't really seem enough! But I do thank you from this bottom of my heart!
Hi Anne, glad your family are round you and Steve at this time. It was always a tradition to toast the passing of a life - so champagne away. Celebrate the season with him, the rugby songs will be a memory to hold the family doing the chores while you hold him again so blessed. Hold him while you can.
Heady, my thoughts are with you both, sitting reading this with tears in my eyes. You have been such a huge help to everyone on this list- I hope you know now that we are all with you in spirit.
Dear Anne, you have done it again! Tears flowing here. I was always a bit of a cry baby though! Your words have given me a lot of peace as I have been so worried about you. You have been through so much and there were times I thought you were going to give up and just fall to pieces. Nobody could blame you if you had. I honestly don't know how you have coped. They say we all get strength at times of death and that seems to be true.
I am so glad that now you can cuddle up to Steve and let him know you love him. Hearing is the last sense to go unless he is already deaf? Touch is comforting to us all. He will know you are there for him as ever, as he faces his final journey. I am so glad your family are there for you. As for the Champagne you deserve it, if there's anymore have one for me! If things were different I bet Steve would have joined you too.
I am so glad things are calm for Steve he has suffered more than enough so deserves this time with you. I am even more glad that you are able to see past PSP and realise how much you love him and if he could speak to you he would tell you the same thing. How could he not love you?
God Bless you Anne and tell him you love him at every chance.
Thinking of you both, and praying for you and Steve as we all are.
Heady, I'm so glad that you've had so many people caring for Steve that you've been able to relax and just be with him and celebrate Christmas. Much love, hugs and prayers for you all.
I haven't posted or read any posts for a while, just been getting on with things, realising more and more that nothing is ever going to be the same again. I have had a lot of lows lately, I am usually positive and haven't let things get me down too much until now....this Christmas.
I have a quiet time at the moment, so thought I would check in, and I saw your post dear Heady and now, tonight, I will kiss and hug my husband and tell him I love him when I put him to bed and try not to cry.....
Anne you are so lovely and I applaud you for your strength, I wish I could get through this with the love and caring that you always seem to have. You have been such a support to me and everyone on this forum from day one and I thank you for that!
I'm thinking of you constantly and I know that what you are experiencing now is not too far away from what I will have to endure soon, keep up your strength dear friend, you have been an inspiration to us all and I truly feel for you....
Dear Anne, thank you so much for sharing with us exactly what you are going through. I'm glad you have your family around you and Steve and pray you will all find strength for the days ahead. Continue to lie with your lovely husband, giving lots of cuddles and telling him you love him and how much he means to you, he may not respond but he will hear you and that's the important thing. Keeping you both in my prayers. Lots of love Nanny857xx
Heady sorry got a lot of family here, just seen your post, very sad time, especially at Christmas, but PSP cares about no one, sending you a big hug, so sad your post, I was thinking about what you said laying with Steve, and thought it was so sad, looked at George today and felt so sad. Xxxxxx
Thank you, Anne for your lovely post. It helps to be able to see well ahead.
I'm so glad you can savour having your loved ones around and you are having time to relish the life you had with Steve.
At present I am having trouble remembering how Chris really is. You brought me up with a start. I asked him if he needed anything else. He usually doesn't reply but he said, " only a kiss ".
Beautiful beautiful post. You are fortunate if I can say that to have this quiet time with him knowing what is ahead. Treasure these moments. Many prayers. Love Sue
This is finally a beautiful moment for you all. No one really knows what the end will be like, I am glad that for you it was filled with your family and at a time that you can all be together.
Having a glass of champagne to celebrate your life together sounds like the most perfect thing to do, after all you had a life filled with love.
What a loving tribute to your life with your wonderful Steve. I can only imagine the lump that wells in your throat at times of wondering. There is a time and place for us all to travel this path, some sooner than others. I realize you are at a peaceful spot with this and I pray that as the days go by that this calming peace wraps around you as you feel the love and support of family and friends. Heady/Anne take care of you, enjoy your champagne and celebrate as you said, the life that you and Steve have been so blessed to spend together. Thinking of you, praying also.
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