PSP Association

1pm lunchtime and drinking wine

Yes I'm stressed

Busy day, dad very depressed (obviously) and I'm feeling very fed up generally, house is messy, had decorators in, dusty musty (that really drives me insane! So I'm gonna spend the afternoon cleaning with 🍷

Mainly I'm just having a shit day looking at my dear dad thinking dear god, he is so bloody helpless, why or why is this dragging on and on? I just pray he goes to sleep soon and will be free of Psp! Equally I feel awful saying that as we have been losing so many of our dear friends of late! But I don't want my dad to keep suffering! Once again we are waiting for the ol bowels to open which are being very stubborn despite the usual laxatives and suppostries!

Why is life so shit? And so bloody unfair?

I HATE you Psp!!

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Vino sounds like the cure to me!!!! I ask myself all the time why is this happening and how much longer does someone have to suffer.

You are not awful for saying that, you are compassionate for thinking about your dad and not being selfish about keeping him here. I was once asked why we cry when someone passes, I said because I will miss them....not for them but for me..it was at that point that I viewed death in a different light. .

Hope the bowels open up but mmore importantly, that the vino keeps flowing

Hugs

Paola

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Aww thx you Paola

Knowing your there to listen and advise helps soooo much ❤

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Don't underestimate yourself reading your posts help me as well

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What you have said is just being honest with yourself and the plight of your poor dad. I think that often we are more afraid of being left alone but in my heart I know that Ben doesn't want all this suffering that is in front of him. At present is seems happy enough and isn't yet at the latter stages of the disease, he can't however do anything much for himself, speech and choking getting worse, needs help with feeding bladder and bowel problems and so the list goes on. I'm lucky in that he is reasonably cheery and good tempered but things are definitely getting more difficult for us both.

Keep the wine flowing and a stock of marigolds in the cupboard

Love Kate xx

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Bless you Kate, thx you x

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Wine & a good old scrub with the marigolds....that'll do it! Sending hugs xxx

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Laughing at that, thx Suze x

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I know what you mean.I feel guilty looking at a future after PSP.

Then Chris seems brighter, smiles at me and, when I asked if he was happy, he said "yes ". I was amazed. To me he has lost so much.

Good luck with the marigolds - I am not an enthusiastic cleaner but have had to learn !!!

I'm good with the wine, though !!! Nearly time - - -

love, Jean x

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Bless you Jean! I'm pleased Chris seems brighter!

I've cleaned and cleaned and now happy with the result! Cleaning makes me switch off to a degree....but oh, the wine helps x

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Cleaning makes me feel better, love a tidy house, don't like wine, but wished I did, I have PSP so much. I have just come in from my best friends husbands funeral, sad day, not really looking forward to having to arrange a funeral!!!!! Xxxxxx

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Aww Yvonne I'm so sorry! Hugs for you! ❤️ X

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It does seem to have been on-going funerals lately, doesn't it ?

I feel I should make advance plans but can't !

Shame about wine. I don't really drink loads but it does help.

love, Jean x

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Hey doglinton, if you can, at some time, start to prepare what you'd like said at the funeral, better to be a little prepared than faced with everything in one go. Try to find a little quiet time and you'll find the right words etc. As

Heady said grieving begins when PSP is diagnosed. Love jingles x

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I prepared what I want said about Chris ages ago. I knew I wanted the Chris pre-PSP acknowledged as well as the patient man everyone sees now. Someone said what a sweet man he is. Was he always ? Well he was so much more than a sweet man !!!

I've been grieving for 4 years.

love, Jean x

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😞

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Hugs back to you, hope you are feeling a bit better x

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Amanda, be kind to yourself, we feel or have felt exactly the same as you.

Sending big hug.

Lots of love

Heady

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Thx you heady

I shouldn't be moaning when I think of you!

Hugs right back x

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We all think that satt, honestly it's just brutal to watch our loved ones struggle ... I hate it so much and hate feeling constantly sad for my mum . Then I feel so guilty and selfish for thinking of my feelings and not my poor mum who is actually going through this horrendous disease . Enjoy your vino it'll take the edge of it all at least for a bit xxx

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Hugs Mary hugs x

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Good for you drinking wine,if I could join you I would life is sh.....isn't it. Please be strong xxx

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'Tis shit! X

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When you see your love one who all his

life has been your crutch and now rolls are reversed it hurts xxx

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Any time is wine time. If it takes the edge off... that much better.

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Agree

Sometimes the edge needs taking right off!! X

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