I am sorry to say I have joined the brave army of PSP caregivers whose loved one has lost the battle.God has been preparing me for this for some tome but still I was shocked and in disbelief when the rehab facility called me just after midnight midnight on Tues to say my beloved Don had passed away.I had been with him until his bedtime that evening and tucked him in for the night.He was his usual self,accepting of his circumstances as always,even though disappointed to learn just earlier that day that they wanted him to stay another 2 weeks to gain more strength before going home.I dearly wish he had gotten to be at home before he passed.Little did I know when I took him to the emergency room on May 30 with breathing problems that he would never come home again.

God Bless All and say a prayer or two for me that I may do something worthwhile to help others with the remainder of my days . Janet

21 Replies

  • My thoughts and prayers are with you Janet. There is a worthwhile life after PSP and I pray you will soon, once again find peace and joy.


  • A brave and compassionate post, Janet.

    Its been a long journey for you both and I hope you will be able to gain solace from all your memories.

    My thoughts are with you. A big hug from Jean xx

  • JN, I am sorry...now comes the new journey; the one that says ...you can do it, it's ok to do it independently....I am learning this journey and you will too....for now after the shock , comes the tears and the perplexity...What Now?

    Goodbye Don May you rest forever in peace...


    The LORD is my light and my salvation— whom shall I fear? The LORD is the stronghold of my life— of whom shall I be afraid? Psalm 27:1

  • Comfort and peace to you, Janet. May we all find ways to be helpful to others now - but be kind to yourself, too. Love, Sarah

  • Dear Jan, I am so sorry to hear that Don has passed away. May he rest in peace, finally free from this evil disease. Now it's your turn to be looked after. Grief is very hard, take your time over everything, nothing needs to be done immediately, no matter what others say. Do things your way, in your own time. Take care, we are all still here for you.

    Lots of love


  • i afgree iwht you anne#

    lol jill


  • Deepest sympathy, and prayers coming your way.

  • Janet I'm so so sorry, I feel your sadness as I'm still feeling mine 6 months after I lost Keith! As Anne says, grief is very hard, it comes over you in huge waves, completely out of the blue, there is no control or right or wrong way to feel.

    Please know that we are all here for you, to support each other as best we can,

    I'm thinking of you....Pat xx

  • My prayers are with you. So sorry for your loss.


  • Janet I am so very sorry that Don has died. None of us know for sure when our loved ones will go. So please don't blame yourself for what could or should have been. I am typing that and knowing you will, because we all do. Just remember you have been so good to Don and you did your best for him. Nobody can stop our loved ones dying and therein lies the real tragedy?

    Be kind to yourself and grieve in your own way. Always remember we are all here for you though? You are never alone Janet. Stay in touch as we all help each other get through the sad times too.

    Lots of love to you.

    Marie x

  • My prayers are also with you. Yvonne xxx

  • Thanks to all for the kind words.I wrote my post earlier today as I was preparing to leave for Don's funeral service.Now all the guests have come and gone.but my daughter is with me.My family has been my rock.

    I have to say that I feel much comforted by the funeral service.Don looked so peaceful and at rest that I just knew that it was "right" that he was taken when he was.Now I miss him so much but I am happy for him at the same time.Bless you all!

  • JantheNana I want to say I am so sorry for your loss. Take your time too grieve. I will say prayers for both of you. 🙏🏼

  • Janet I am so sorry and sad to hear of you loss . I am sending my love and prayers to you .

    What a compassionate post , so clear how you loved Dom so much . Please take care xx


  • I am so sorry to read that Don has died but at least he is at peace and free from the awfulness that is PSP. I hope the memories of the many happy years you had together will bring some comfort. K.

  • I am so sorry. Love and prayers for you and your daughter.

  • My Bill went ahead to heaven a year ago and I am thankful everyday that he is no longer suffering. PSP is such a horrific disease! But the hardest thing is that he just is not here and it is hard to believe. But I can go on because he is finally free. If you can get to this point too you will be calm also. Grief will not be gone but on the back burner as your guy is at last his old self happy loving and watching out for you and your family every minute!!!

    Take care yourself now.

    God bless


  • Prayers your way🙏🏼 Alicia

  • I too am feeling for your loss.

    Love to you and your children,


  • Thank you Susan

  • Sorry to read of your loss. My thoughts and prayers are with you and your daughter. Lots of love, Nanny857.

You may also like...