Hi, Steve.s funeral is tomorrow, well exactly today, it's well past my bed time!
The last few days have been manic, hardly a moment to myself.
I hope we have done Steve proud, with service we have prepared. I'd like to think so, bit late now, if not!
I have to say, this is total shit! I don't know how to feel. I am still so relieved it's all over for Steve and dare I say it, for me too. People keep asking, how am I? How can I say, better than for quite a few years?
I have been grieving since this started,how ever many years ago that was. Surely, there only so many tears that can flow.
I loved my husband, he was literally my other half, he made me whole. Somehow, I have to allow him to be cremated in 14 hours time. HOW????????
Heady!
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Heady
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It's going to be ok Heady, You are still doing a fantastic job taking care of Steve. He is free, you are free. No one will judge you unkindly for feeling this way. You have as great a day as this day can be .... I f you want to cry do it; if you want to feel relieved; feel it . Just don't feel guilty!
I've just woken up at 5am today and read your post, I'm sure without doubt you are feeling what all of us will do when the time comes. Anne you have always done your absolute best for Steve and are still doing, your feelings now are perfectly natural, please don't ever think they are wrong!
I'm thinking of you, especially today, my dear friend, keep strong for Steve and for yourself....
Dear Heady - you're happy this whole shitty PSP thing is over, for Steve, for you, for everyone around you - and good riddance too. And you can feel so very relieved about that. But Steve... PSP took him away from you so slowly, so mercilessly, it was a very long goodbye that never got to be said - and that must hurt so very much. So yes, you can breathe again, but now on your own. And that was never the plan. I don't know how you will do it, but you will find the strength, maybe by remembering Steve how you used to know him. And try to be kind to yourself, he felt your love till the end. It was all he had left.
I will be thinking of you - so many will be with you, hoping it will help you through the day.
You have to start to live your life again and free from psp it will be hard but take time to do things for yourself without having psp in your way. You will always have Steve in your thoughts and in your heart. Steve would want you to spread your wings and take time for you. Thinking of you and your family today big hugs xxx
Anne all I can say it will be a day of mixed emotions. There will be tears and laughter. Anger and acceptance. In amongst all the the people that have come to say goodbye to Steve and support you.... you will see people grieve in there own way for there own reason.
But what ever you do it will be dictated by the moment. And what ever happens you can be assured that every one will know that you have done your best for Steve for so long and your true friends will know that in the time you have cared for Steve you have had a long goodbye.
And at the end of the day when everyone has gone you can sit down with a glass (or bottle) of wine relieved that you have got through the hardest day. And when the thought of how am I going to manage on my own kick in you must think about how much you was able to achieve whilst careing for Steve.
Be yourself and go with the flow. Love you loads and will be thinking of you. Jane xx
I am still here, though rarely contributin these days. Like you I felt guilty when Chris died and his funeral happened so quickly there was no time to feel anything. Next week it will be a whole year since he departed. However, interestingly as time has fone by, he appears in dreams and thoughts more frequently and always smiling - which he didn't do much if i. Last few years
Will raise a glass to Steve today ! This is the final cruelty of this disease, it has to have the final word, a girl at our local group lost her husband in Oct, she looks a new woman, rested , positive and planning ahead. That will be you and hopefully us all when this horrific journey ends.
Sing loud at his celebration and drink well at the wake!
Heady, we're all here for you and will be 'with you today' - just be calm, you've done all you possibly can for Steve. You've done a lot of the grieving since Steve was diagnosed so let today be a celebration of his and your life, he will always be in your heart. Lots love and thoughts. Jingles
If you had a beautiful jewel and kept it in a plastic box, and somebody stole the jewel, would you really care about the plastic box? It is the plastic box you are cremating. The jewel has gone to wherever souls go. x Linpin
My thoughts are with you too. So many sad people this Christmas. Now we are into the New Year and still there is sadness. Bugs will watch over you tomorrow and always. I hope you have supportive friends and family. We will always be your family but sadly we can't be physically there for you tomorrow. Please know we are thinking of you.
Dear Anne. Take it easy, don't rush, it will be ok. After so many years caring, worrying and at times despairing, it takes a while to adjust to a new chapter in your life. All of us here are thinking of you during this difficult day today. Sending you hugs. Love Maddy xx
Heady I will be thinking of you today. Of course you have done Steve proud today and for many years. Please now take care of yourself. Hugs and kisses. xxx
I will be thinking of you today Anne. If it is anything like my experience it will be a surreal sort of day. You will get through it; you will cry, you will smile at all the old friends and family who will come, people will say how well you're doing and how brave you are, but you will feel as if none of it is real and underneath you will probably not feel brave at all.
It will be a difficult day but also part of the healing process and afterwards I'm sure you will gain comfort from having done this last thing well, for Steve. He will always be with you in your memories of happier times.
Anne you are feeling what most of us will feel after the long haul of caring for Steve, watch him decline, doing all you can to keep him safe and comfortable. It had been an arduous journey that is almost at its end. My heart and love go out to you on this difficult day but with the love and support of your family and friends you will finally get to say your last goodbye knowing he is no longer suffering. I think as others have said that we are grieving the whole way through this rotten journey and have been preparing mentally for the time will will have to 'go it alone' and pick up the pieces of a normal life. Anne I'm sure that you will get through this with tears and sadness but come out the other side able to enjoy life again, see friends and family, go places, have long lunches. It will take time but you will eventually have good memories pre PSP in your thoughts. I am thinking of you today and putting a loving, supportive arm around your shoulder to help you through.
You will get through this and you are going to have tough times ahead adjusting to a 'normal' life.
Stay as strong as you have for your beloved Steve.
Sending oodles of hugs and best wishes xxxxx
be strong love, my thoughts are with you. Its something I am gonna have to deal with in the future dont know I will deal with it. Les has got a little worse since xmas. Sending hugs. Madam x. xx
Oh Debbie, yes the tears will stop and you will smile and be happy again. Fred will watch over you and give you the strength you need. Lots of love to you.
Like I said to tokki, This will be the final pull on the hill of horrors, and atop waits a new and happier life...Just a little more and all that will be left are your lovely memories.....
Just to let you know my thoughts and prayers will be with you and I am sure those of all of the others on this site who have benefitted from your wisdom. May peace be with you.
When you read this it will be over I would think. One thing I know is you will get through it! You have faced so much and you came through the other side. Steve is at peace. He will watch over you and give you strength. Lots of love to you. This must be so hard for you but you will be alright Anne. Remember we are all here for you.
Oh Heady! What a whirlpool of feelings you must be experiencing! Just hang on to the facts that you did your husband proud. You loved, supported and cared for him. He knew that. Be gentle and caring to yourself now, no recriminations. You gave up part of your life for him. Now, I am sure that he would want you to remember him with love and to live life for yourself. Sending lots of love and hugs. Rx
Anne will be thinking about you today, it is going to be such a sad day for you all, but Steve is away from the bloody horrible PSP, it drains you, and takes away somebody that you love, Steve is in a better place, you look after yourself, please keep posting, will feel lost without your kind words, sending you a massive hug. Yvonne ❤️Xxxxx
I'm sure the mixed feelings you describe are the same for us all. I know I lost most of my loved one a few years ago and see the rest gradually going. Thinking of you today. Big hug, Anne.
Big hugs heady xx you've been an amazing wife, life partner and carer for Steve and you're entitled to feel however you need to now! I hope the service goes well and that your family and friends are all there to support each other. Thinking of you today xx
Thinking of you Heady. You'll get through it even though it will be tough. As my grandson said, it's alright Nanna B, you are allowed to cry at funerals, mummy said, but you are also allowed to laugh. When the formal part is over and friends and family are all together, it's good to remember the happy times. When you are finally on your own and have time to think, you will feel sad, an understatement, but I got through that by planning all the good things I'm going to do, and telling Colin about them. I still speak to him all the time and tell him how I feel. I know he wants me to live my life to the full, as I'm sure Steve does for you. So grieve in your way Heady and when you are ready, find a good life after PSP.
Sending you a big hug Heady, to add to all the real ones you get today.
Those tears will heal you. Eventually they will make some room for the feelings of deep satisfaction that are your due. You rose to the challenge, and did a wonderful job. I will hold you in my thoughts today, and wish you a long and healthy life. x
May you feel the love and peace from all of us in this forum. You are a remarkable woman. You've been a wonderful caregiver to your beloved. And you've inspired so many here online. I will be thinking of you today.
I'm following in your footsteps and your example, Heady. I have said it many times, you are a beacon in the way you have handled this PSP monster. We all love you and I know that you can do it.
If you can, we can. You have been my inspiration and will continue to be until I'm in your shoes.
Steve has gone ahead, Heady. He is finally free and at peace now. No more worries. It is just that he is gone, not here any longer. That is the hard part. But just sit with it for as long as you need. Find pictures of him by himself taken when he was well. Put them out. 2 or 3 and look at them often. It is much easier to talk to those pictures because he is well. Much easier to remember your lives. I have one picture out of Bill and I with our grandkids taken a year before he died. It is precious. The rest are before the illness. I find them comforting. As if he is talking to me. We talk every day. Every hour sometimes. He helps and takes care of me daily. Much more now than he was able to for the last 6 years. Take deep breaths and talk and remember before the illness. Blot the illness out. Remember only the good times. We have all had enough of the illness.
Get thru this day as best you can. No one will judge. You are a hero!
My thoughts have been with you. The stresses of today will eventually begin to fade and a new normal build. There is no right or wrong way to feel only the way you do feel. It’s a hard and confusing time that can be eased with the kindness of family and friends but there is a great deal of truth in the old adage ‘time is a great heeler’.
Dear Heady My heart breaks for you this last farewell is tough. You will get through it. You are an amazing lady and will continue to be. Hugs and prayers.
Dear Heady, I hope Steve's funeral went well for you and you got through the day which I'm sure was hard for you. Rest now and think back over the happier times you and Steve shared before PSP took over both your lives. Sending you lots of love, Nanny857xx
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Losing a loved one to PSP
hello I am the wife of a newly diagnosed husband joining your lovely supportive group.
\"Why am I so tired all the time?\"
I feel like all I do is complain.
