Mike is now bed bound. We moved the hospital bed to the living room and the hospice nurse is visiting daily. He has been prescribed liquid morphine and is not eating any more. Just a teaspoon of baby food yesterday. I don’t know how much to share with my psp family but it is so horrible and sad. I’m in touch with my sisters In England every day but they are restricted from coming over because of covid. So that sucks too. My daughter who lives with us is brilliant and helps enormously, and that is a comfort to me. But everything else just sucks.
Sorry for the rant but I know you guys understand.
Caroline
Written by
Caro2132
To view profiles and participate in discussions please or .
So sorry to hear this, everyday when I open the site I dreaded reading updates like this, but I know it’s in the horizon for mom now. We had Pallative doctor came in last week and despite a lack of accurate timeline, she said she wouldn’t be surprised if mom passes within 6 months, so that makes us qualify for hospice care.
The one thing we all understand is PSP sucks! Try very hard to be a wife again for these final hours. Anyone can do the physical side, but only you can tell him you love him.Thinking of you. Sending huge hug and much love
Have been exactly where you are now Caro2132 - it's sadly now just a waiting game until Mike decides to walk over that rainbow bridge. One thing this time does give you is the chance to become his 'wife' again and leave the caring to the hospice nurse when you can.
Take time to sit with Mike and talk to him, reflect on the happy memories of your life together and try to find peace in your heart and mind that he's soon no longer in the grips of this dreadful disease.
As much as it hurts when someone passes, personally I found it a huge privilege to be there at the end of this road.
Don't get me wrong it hurts like hell, and will do for always, the pain doesn't go away but in time it is something that you learn to live with and can reflect and remember (with or without the tears!), the good times that you have had.
Mike's time sounds to be fast approaching, and it's now only a matter of when and not if.......be strong, take comfort that you are able to be with him (so many sadly can't even now..)
My FIL lasted several days once he was unable to take food and was on a morphine driver too, but when the time came he simply slipped away, very peacefully, and with his loved ones at his side holding his hands and telling him they loved him. It was in it's own way a 'beautiful' and peaceful end to a long and often painful journey.
A moment of peace, for all of us, after such a long hard slog, was a chance to cry, and yes even to laugh as we remembered the good times too......
Be strong, we are all in this together, and are holding your hand, as you walk this final journey with Mike.
Dear CarolineYou are right -it sucks: the whole combination of things making it even worse for you and I am so glad that you felt strong enough to reach out to this PSP family. Two years ago I was at the stage that you are now so my heart goes out to you. I have a belief in life after death which you may not have but what I hung on to was that my darling husband would not longer be trapped in a body which was failing him and that gave me courage to let him go. Even if you do not have that belief Mike will be at peace. Just spend as much time talking with him of all the lovely things you did together and it may raise a smile. I am so glad that you have your wonderful daughter with you. Love to you all. AliBee xx
So sorry to hear this. Praying for this to be as painless as possible. Hospice knows what they are doing with the pain meds and hopefully that gives you some comfort. Vent if you need to! Much love,-A
It’s so hard for the ones that are left,but I wish the assisted dying law could be passed so that they don’t get prosecuted and we could choose when to leave our failing bodies. You wouldn’t be treat an animal like it. As I get steadily worse,it seems more appealing but because of COVI Switzerland is off limits!!
My husband chose to stop eating and drinking when he couldn't take any more. He had already changed over to hospice from palliative care. He was bedridden. He had been incontinent for 6 months or so, it may have been longer. He couldn't really see. He was on morphine and lorazepam . He started not eating and when he was resigned to the hospital be, he stopped drinking. The whole process was 10 days. The meds kept him relaxed with no pain. I can only use epithets describing what an awful disease this is. He is free and at peace. But that just makes one of us..
As others have already said; 'be the wife' that you are. Hold his hand, let him know how much you love him - he can still hear your voice. Hugs and prayers during this time of transition.
It is so hard. But you are together, you can hold Mike's hand and tell him you love him. If you can, focus on the end of his pain and suffering, and I so hope that helps you with your own pain and suffering, and your grief. Sending hugs and love. Purrlie
Hi Caroline, it’s not a rant - it’s survival to share your story!
My mother passed away in April of PSP. Hospice came in the end of March. My dad and I have had no other help due to covid.
As you said, it’s horrible and sad. I’m haunted by what she went through; however, I have no regrets for any minute I cared for her. I have no regrets for being with her at the end. You will never be same person your were before Mike became ill. You will be stronger and wiser. But right now, like others, I’ll hold you and your family close to my heart as you progress through the final stages of this evil disease. xoxo Lauren
Dear Caroline my thought are with you both as you journey along this painfully difficult road. May you feel strength and comfort in the prayers of others and may the Lord fill your heart with sweet moments and memories of eternal love 🙏💔
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Difficult question about the end
The End
End stage symptoms 
