This disease is so cruel: Hi everyone, I... - PSP Association

PSP Association

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This disease is so cruel

Baileyboo profile image

Hi everyone, I haven't written on here for some time as I have struggled to care for my husband. Les is now receiving palliative care in hospital after yet another serious bout of pneumonia. He was in a care home since August 2016 and they know nothing of PSP. PSP is so cruel and it is now taking my husband of 41 years away from me. I am not blaming the home for Les having PSP but the hospital gave him a cough assist 6 weeks ago and it has been on a hook in his room instead of being used each morning to help clear some of the mucous from his chest. Although exasperated by this I have put it to one side for now as I need to be with Les. I am struggling so much right now and knowing this is the end is heart breaking.

I wish you all the best in your own battle with this disease and send love to everyone.


17 Replies

Sending big hug and much love

Lots of love


Baileyboo profile image
Baileyboo in reply to Heady

Thank you so much Anne. I have been selfish and begged Les to dig deep to fight this. I told him on Monday that he wasn't to try any more. Although I love him if he has had enough I will always love and he would only be a whisper away. This is incredibly difficult.


I do so sympathize. It is incredibly difficult. Hugs, love and peace, Sarah

doglington profile image
doglington in reply to Baileyboo

I was exactly like that with Chris 3 weeks ago. It was hard to let him go but he died peacefully.

Big hug, Pat. It is so painful.

love, Jean xx

Thinking of you at such a dreadful time. Jx

I'm so sorry! Sending my love ❤

Pat there is never a right time to lose the one you love. I am so very sorry. I think those of us who have been here already know just how you feel.

Hugs to you both.

Marie x

Thank you all for your words of comfort. I am praying it will be peaceful for Les. I will miss him so much. We have been married 41 years and thinking of him not being here tears my heart in two.

Love to you all


Kylie4951 profile image
Kylie4951 in reply to Baileyboo

i am so sorry Pat! My Bill went to heaven a little over a year ago. There is no way to prepare. But as I read everyone’s posts I have come to think that the sooner we tell our loved ones that they have fought long enough and that we love them so much now and will always love them but the time has come for them to take the hand of the Lord and go with Him. Sometimes I am sure that Bill continued to suffer because he knew how I would miss him. He hung on for me and our daughters. It is hard but we must let them go and tell them that it is ok for them to go. It is incredibly hard but I do think we are relieving them. You are doing good, Pat. I am praying for you.


So sorry you are having to go through the guilt and heartache of knowing that the one you love is declining in his ability to stay with you. I hope that when Bens time comes it will be quick and painless, I hat to see him suffer like this and know he's glad more than enough.

Sending love and hugs

Kate xxx

Dear Pat, sending you strength and peace at this time. I hope the good memories wrap you both with comfort and help in these tough times. Xx

Sending my love and prayers. I pray for strength when we reach this point.

Hi Pat,

Your Post is very similar to my life right now. Charles had another bout of pneumonia and now has a UTI. I have a cough assist and I have used it each day. Like you, this is heartbreaking. Charles is stable for awhile until the next battle begins.

Take care, Pat, I'm with you in spirit.


Baileyboo profile image
Baileyboo in reply to Cuttercat

Hi Cuttercat

Thank you for your reply. Les is waiting for a bed in palliative care now. He is on no medication at all and on Monday had the best day in month's. Yesterday he was really poorly again. I don't know what to expect when I go to see him each day. From being called to the hospital on 29 October to spend time with him as he was leaving me to him now back in the ward.. PSP has a weird way of testing your emotions.I am so sorry you are in a similar situation and send my love to you both.


Dear Pat,

Don't I know it. Charles is not responding to the antibiotics but each day is different. I often think each day may be the last. So hard.

Love you too.


doglington profile image
doglington in reply to Cuttercat

Big hug, cuttercat. Thinking of you both.

love, Jean x

Baileyboo profile image
Baileyboo in reply to Cuttercat

Hi Cuttercat

PSP is like the worst rollercoaster for our emotions. Les has now been off all medication for 10 days. The consultant said to let PSP take him. I agreed to this as watching him suffer is heart breaking. He is no longer on the list for palliative care as he is recovering. I don't know where this is heading. If he has pain he will be given something to ease that. I was told he had totally lost his swallow but he is eating as usual, admittedly pureed but he is eating and drinking. This happened on another occasion when he was on oxygen for a while and returned after that too. I have to soldier on and pray he can improve. I don't know how without any medication for his type 2 diabetes apart from other medication be was on before PSP was diagnosed. Where he gets his strength from is a mystery. To top all this I lost my purse/wallet on Friday and it contains cards Les has sent me with flowers and these are irreplaceable.

I hope things are okay for you at this point in time.

Love & hugs


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