Dad: As you know I dont post on here very... - PSP Association

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Nemo14 profile image

As you know I dont post on here very often I just update now and again....find it hard to respond to peoples post seeing all the different stages on here I think in time I will be able to do ❤️

Dad in the final stages of PSP had a RIG tube fitted for feeding 4 wks ago had a bit of a blip in hospital but came home...... Week later tube comes out on the weekend gets admitted to hospital tube refitted Dad critical as sepsis rasies its ugly head he fights off the infection....taken off oxygen last friday hoping to come home today/tomz....back on oxygen yesterday had another spike in temp heart rate etc another chest xray bloods etc more stable this morning still on oxygen.....Already had a meeting with the Pallative care dr and having training as he is now on a feeding pump.....

Dad asked me not to leave the hospital yesterday which concerned me held his hand all afternoon before his blip.... going to the hospital to try and get Dad home as he doesn’t want to die in hospital he wants to die at home.....

I am at peace with the fact Dad will pass I lost my Dad 6mths ago when he could no longer talk or do anything for himself...when he is ready I am ok that he has to leave us for now and he will no longer be trapped....tell him every day I love him proud of him and thank you for everything....

Every day something is different I go thinking hes stable and less than 24hrs its up in the air again !! I am physically and emotionally exhausted esp going to the hospital evey day but with this rollercoaster I can’t not see him. Feel bad about moaning but I am exhausted.

I do think of you all even though I dont show it on here my heart goes out to you all hugs and thoughts to everyone ❤️❤️❤️

11 Replies

Sending big hug and much love

Lots of love


I feel for you, but I have my own worries now.


It's definitely an emotional roller coaster. It sounds like your dad still has some fight in him so take advantage of it and be with him. He'll let you know when he has had enough. Getting palliative care involved is a good idea.


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Moan away. PSP is exhausting for care givers. It’s a physical and emotional roller coaster. I’m have a good day at the moment. I know it will pass. Something will happen.

Thoughts are with you,Nemo! Found this the worst time for me too. Up and back to hospital is never easy, and what you find is out of your control!

You are doing all the right things, burocracy just adds to the stress.

Sending big hugs to you and dad. Hope you can get him home soon. Soon rather than later as return trip may require ambulance and extra aids to make him comfy.


Jen xxx

Oh dear. I hope things work out to bring him home. Thinking of you.

It's tough isn't it, luckily my husband had made his wishes known that he didn't want hospital intervention to prolong his life. No artificial feeding or intravenous antibiotics. His only wish was to be kept as comfortable and painfree as possible but stay in his own home until the end and I was able to support his wishes. I hope that you manage to get your dear dad back home so that his wish can be granted.

Sending love and warm wishes

Kate xx

I loved reading your post. Yes you said this perfectly and you have been there for him. Take care and bless you.


Bless you it’s so hard some days you tho layout have accepted things others you are an emotional wreck it’s awful x

Dear Nemo, My heart goes out to you. PSP is so evil with its down days and then giving us a little bit of light, only to let us down again. And yes it is stressful and exhausting, but as carers do we let them know, No, as we don't want them to feel worst than they already do. So I'm praying you find the strength to cope with what lies ahead. You have been great and will continue to do so I'm sure. Lots of love Nanny857xx

Yes NEMO14 it is an exhausting business. I too do not write often. In fact , as most of you would know, there is so little time to do such things. Especially at this time of the year. I admire how you are tackling this section of your PSP journey, There will be a life for you beyond this never ending roller coaster. Take care for yourself. Happy Christmas..all.. Val

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