PSP Association
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Loss of Hope

My husband passed away a little over two months ago. I am slowly, but surely, recapturing myself. Now that I look back on our ordeal, I realize that one of the most difficult aspects - one which I could not dissuade myself of - was the hopelessness of our situation. I have always been the greatest of optimists, but now I could find nothing to look forward to. Any missteps that I had made in my relationship with my husband were past repairing, any trips that we had planned on taking together for years would never happen, there was no new house or condo to decorate together, come spring no new garden to plant. All of the "togethers" were erased from my agenda. Even the hope that we'd finally share a grandchild didn't seem to be possible. As I emotionally sleepwalked through his illness, I felt as though life itself had somehow surreptitiously leaked away. Then he died. So very peacefully. I still cannot bring myself to picture him lying there.

But now two months down the road, I am starting to recover. I'm helped by a wonderful grief counselor from Hospice whom I see every other week and by the fact that my son and his partner have announced plans to marry and have children. Hope for the future has reentered my life and is invigorating me. I'm also making plans to get back to my workout regime. If I carry through with this last, it will be no small measure of how far I've come.

My wishes for future hope and happiness for everyone.


12 Replies

Hi husband passed away 3mths ago so we are in the same boat. It all seemed surreal at first but once everything started to settle down, I realised there was no longer

"we " ...everything is now " I ". It 's still hard to think that it's now my house, my car etc. not ours anymore. I suppose I'll become used to it eventually but it doesn't feel right. My consolation is that Frank is at peace & in a far better place.My 8yr old Grandson keeps me going but that's now another story......I'm putting another post on the latest.

Take care & try to keep smiling. Love Hazel B xx


Hi Barb

My husband passed in April 2010, I know your feelings only too well. All I can say is take one day at a time. Things do get better, as time goes by you remember the good things and how the person was. The guilt fades as you know that you did everything you possibly could and you learn to stop beating yourself up. 2 years and 3 months on, time flies, yes there are good days and bad days but the good days outnumber the bad. This coming Sunday would have been Ray's 61st birthday, another day to deal with, but I will survive.

You are not alone with your thoughts and feelings, we all grieve in a different way and for a different length of time. Just go with it, cry if you want to cry and laugh if you want to laugh.

Thinking of you.



How profound .. Although it will happen to everyone eventually , and we all know it , it's not something that we can prepare for how ever hard we try . That's just how it is ..

My husband and I are going through the throws of it all but send all you our love ..................


Might I say you are all such strong courageous women. Sometimes when I think I can't fix another malfunctioning medical device, fight another fight for some service my hubby needs, or clean up one more drop of urine I realize that one day I won't have to...and it breaks my heart. What you've said here is such a comfort.

Hugs to all of you.


Dear Rosearie .... such TRUE words. I think the same...when I am washing my mums smelly underwear and changing her catheter .... that I hate it, but wouldnt I rather be doing it, than remembering doing it when she is gone. Tough times but thank you for your words, they put things in perspective. Much love, Clara


Clara, you're a good daughter and you will never regret all that you do for your mum. Not everyone is as strong. Mum raised a good one!


Dear BarbR, thank you for the post above, you dont know how touching it is to read those thoughts, your deepest emotions, the little things you are remembering like the candles on the deck, the pistachios he loved....all the things that made your husband Tom who he was. You are so good to come on this forum and communicate with us, we need to hear about the ''after'' too, so we can think about how we might cope, all of us, when our day of goodbye comes. Wishing you peace and love.

Clara xx


BarbR, how generous of you to share those sweet memories with us. It's strange how the whole grieving process sort of begins during the years of sickness when we have to wall off a lot of our emotions and then continues to evolve even after we lose our loved one. I am glad you have those wonderful memories to keep you warm, but I know they break your heart at the same time. Sometimes I think I won't survive this either, but through your words I see that maybe the pull of life will strong again one day. Thank you, again, for sharing with those us still in the middle of it all.

Warm hugs.


I deleted my previous post on this subject because the first sentence did not make sense.

Rosemarie, I know exactly what you mean when yu say that your heart breaks when you realize that one day you won't have to perform all of those onerous tasks that we do for our PSP sufferers. I experience such feelings more and more as I get further away in time from my husband's illness. I thought that I could not stand to feed another spoonful of pureed food, change the channel on the TV one more time, adjust the pillows yet again. Now two months after my husband's death, I would give anything to feed him those pureed carrots again. Anything to have him back for even a few minutes.

Now I am entering a new stage in my grieving. For the past two months I have been recovering from our ordeal. I am not healthy myself (severe COPD), but have started to breathe better, and generally feel stronger. For these past two months I have mainly felt relief that it was over. I did not miss my husband's presence in my daily life a great deal, because we had not lived together for over two years. I felt liberated - free from the dread of the unknown. Whenever I thought of him it was of the sick Tom, the unable-to-communicate Tom. Now that image is slowly fading and I am beginning to miss the real Tom whom I had known, been married to and loved for over 50 years. More and more I visualize us unloading groceries together, him lighting the candles on the deck before we sat down for dinner, him sitting at our round kitchen table eating his beloved pistachios. The images are beginning to flood in and I weep. I think that this stage will last for a long time. I welcome and dread it.


BarbR, do you think caring for our spouse is such a strong "purpose" that we have a harder time starting some kind of new normal? I am sure there is a huge sense of emptiness along with the loss.

You do seem so strong and in touch with what is happening in this stage of the grief, and that is such a testament to what you've been through. Bless you as you move through this stage.


Dear Barb,

Thank you for sharing this and for giving us hope that there is life after PSP

My deepest condolences on your loss. May you find peace in memories of happier times and may you start to gather new happy memories in the future.

Much love

Kathy x


I am deeply sorry for your loss. At times, as I am pre-grieving what I know will be the inevitable steep decline and ultimate loss, I try to imagine life without my husband, and I dread the loneliness.


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