Twilight times: Hi folks. Just an update... - PSP Association

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Twilight times


Hi folks.

Just an update from here, or a sharing of pain.

Things are good in many ways - great bonkers Bulgarian care agency - Its like herding cats with the carers - but they know their stuff, are timely and do a wonderful job.

I love multicultural... travelled a lot and have got a taste to hear different ways and beliefs.

Yesterday two of our Bulgarian carers saw Liz eating chocolate and then launched into how in Bulgaria they made their own chocolate at home. I was all ears as they discussed recipes... But they both asserted how much better it was than Cadbury's... Then one said, "but its very gritty" and the other said back to her, "and it is too hard to bite on." Then they turned to me and asserted that it was , "still very good!"

We all laughed.

Then we shared the big bar of Cadbury's between us all anyway.

I love these people they care and they are so real!

Liz has had a another step down... She is just so tired all of the time. Dopey and struggling to stay focused. She gets up at 12.30 and is in bed at 2030... very tired.

Her mind struggles to think much and her speech is very quiet and difficult to make out.

It's like a terrible sunset as I watch the shadows grow longer and the light fade to darkness.

My heart bleeds.




33 Replies

Kevin my heart bleeds with you, George is not good, he is chesty, not a chest infection, but doctor came in today and gave him antibiotics, just in case. We have lovely polish careers coming in so caring.

Sorry to hear Liz has had another step down, I hate PSP.

Sending you and Liz a big hug Yvonne xxxx

In much the same position here, my husband is up at 9.30 and asleep in chair most the day, carers arrive at 18.00, to put him back to bed. It's an existence for him and a lonely life for me. We too have a nice team helping , not British by birth but speaking English and kind and caring. It's a cruel devastating illness. Hugs to you both xGW


Yes, we all seem to be in the same boat.

I lived and worked in London for many years, now just outside it. So I am well acculturated to different cultures. (The last census gave my area of London as having over 250 first preferred languages) These folk are great and very warm and genuine. There just seems to be a touch of wackiness... Which we both love. I've not seen that before.

Hugs to you too


I am sorry to hear you are feeling so low. However it sounds as though the carers you have are making Liz happy and looking after her well. Do you mind if I ask - are you on holiday or maybe visiting relatives? If so, it's lovely that you can have time away together. Please try to enjoy it. Look after yourself.

Love to you and Liz, Kevin. So hard and sad, but there is chocolate, thanks to the gods. Ec

Kevin_1 in reply to easterncedar

Hi ec

Yes, I was siting there the other night listening to her heavy breathing whilst she slept... And yes, there is chocolate and sunshine :)


It's just struck me, Kevin, that I've probably got my wires crossed and you are using a Bulgarian care agency in England. Huge apologies. I hope they continue to take good care of both Liz and you.

Kevin_1 in reply to Pentland

Hi Pentand

No worries.

I forget that where we live might be a little different from other places in terms of different cultural groups. I really enjoy the mixture.

They are great carers.

Wacky too!

We love 'em.


my husbands the same asleep half the time.speech is very poor very slow in everything.The carers are doing their best for him. You feel so helpless just watching them fade away,Its such an awful illness. We had a lovely weekend last weekend celebrating his 76th birthday he did really well lots of freinds and relatives round him. What a difference a week makes so sad.xx

Kevin_1 in reply to Hidden

Hi Madamx

Yes, its those occasions when the house fills with joy that make all the difference isn't it.

Yes, its sad.



I am so pleased you are experiencing a little sunshine! I never ever thought I could accept strangers coming and going but like you we have great guy who looks after Rog three hours a day, I keep it professional and have to keep the co ordinators on their toes but a good carer is worth their weight in gold. I think it is that you feel safe,

Off for three days respite tomorrow, see you all on the other side !

Julie x

Kevin_1 in reply to Julieandrog

Hi Julie

I hope you get a good respite.

Yes, I am a recluse by nature. Was very happy single handed sailing. So carers coming in was a real strain at first. I've got used to it now.

Glad you've got a good carer too. :) It makes a world of difference.



Darling Kevin it's so so tough watching unable to do anything!! Breaks my heart into tiny pieces! My Dad sleeps more than he is awake, I believe this is so as they can conserve energy for when they are awake......unfortunately darling you just have to go with it and ensure you look after yourself!! Psp is a hateful bag of shit!!

Kevin_1 in reply to Satt2015

Yeah Satt

Mostly I go with it.

But sometimes I check in on my feelings...

"Look after yourself too" should come as a free plaque to every new carer." Eh?




Hi, Kevin.

Can only echo everyone else. Chris sleeps most of the time, hardly talks but can eat and enjoys food. Then, after we had had lots of family for my birthday, he said at bedtime " what a terrific day ". I was astonished, as he hadn't seemed much involved.

I have a carer once a week who is Lithuanian. She is also a big believer in the health benefits of "real " dark chocolate. She is so caring and we laugh a lot. Thank god for immigrants say I !!! She has been here for 15 years.

Its a lonely road for carers, Kevin. Big hug from Jean x

Kevin_1 in reply to doglington

Hi Doglington

"Thank god for immigrants say I !!!"


I love the different cultures... Which aren't so different really. Chuckles.

These folk are refreshing. However I got two British carers today and they were great too. Bit of a culture shock though ;)

This agency comes with warmth and added laughs :)

Yes, it is a lonely road and it will be more lonely later on.

But as folk here say - "Make good memories whilst you can" And that is what I'm trying to do.

Hugs to you Jean




We are all in this together Kevin so you are not alone. My Mum is also tired a lot of the time and speech is almost non existent. She has CBD which is very similar to PSP. I am glad you have some great carers and you can banter with them! It must lift your spirits somewhat if only for a part of the day. Its good to know we can offload here too with others who are in the same boat. Hope you have a good day Mxx

Kevin_1 in reply to Hidden

Thank Martin12

Yes, this forum is a very important space.

I have started the Spring garden work now. (Which was to do the winter clean up I never got to - Chuckles).

We have planned 'Liz's' flower border which she can see from the house. Its the spring event where she chooses what she wants to be grown. I like that.

I'm looking forward to Liz sitting in the sunshine again this year. She sits and smiles, happy and relaxed.



Hi Kevin. I hope things are looking a bit brighter today. I find I have days where I feel in despair followed by a day when I just seem to cope much better. I hope today is one of the better days for you.

Kevin_1 in reply to Pentland

Hi Pentland

Yes, today is brighter.

And thanks. Yes some days I do get distressed and tearful. But sometimes I just sit and check out my emotions. They don't like being ignored and can become a tad unruly if we do that for too long ;)

Today I am happy. Spring is coming (very early) and my energy levels are going up. Time to start hefting the rotted manure from the front, up to flights of steps to the back garden. That's the bit of Spring I'm not so keen on these days. Then comes the seed sowing. I'm not a gardener by nature, but it is a peaceful thing with quiet pleasures.

I hope you are having 'good days too'.

Hi Kevin, share the pain as much as you need to. That's what this site is for. We are all listening to you and trying to give you some strength back in our answers.

Do these wonderful carers give you any sitting time? Ask if not. Or at least walk around the block, while they are there. You do need to get out, whenever possible. It's an extremely lonely world, when your loved one spends so much time asleep, you can't do anything, in case they wake and need you. Can you find a little hobby to do whilst Liz sleeps. Reading, painting, any thing. I started doing a bit of painting, just a "Painting by numbers" that I had bought, when Steve was still able to amuse himself. It does pass the time and give you that tiny bit of respite in your head. (Note to self, find it and start again!!!)

Most of all, keep posting, you know it helps, just putting your thoughts down, helps come to terms with the crap that is happening.

Lots of love


Kevin_1 in reply to Heady

Hi Heady

Your post says it all really. Spot on.

Before we had these carers I was too unsettled to read. Constant interruptions, up and down, you know the way.

Liz is more settled with the carers coming in and I am more settled too.

I love to read. I've studied the same set of Chinese Bronze Age texts for the whole of my adult life. They are one of the five key Chinese cultural Texts. That sounds odd, but the early copies are in a form of writing long since forgotten, until modern Western academia got onto them. The authors got the idea of constructing the book around a binary math system of cross referencing the ideas. Yes back in the Bronze Age! I used to teach on the subject as a hobby and edit books on it. The trouble is that it needs long uninterrupted time. I guess it is the ultimate puzzle book for long car journeys ;)

I will return to that one day. Now I spend my time reading gardening books and that is a great pleasure too.

I am dangerous with a paint brush... to cack handed I'm afraid. I'm even dangerous doing the decorating... best avoided ;)

Yes, I now get eight hours respite a week. It has been a life changer. Currently I am using it to do the garden. I want the garden t be especially nice this year for Liz.

We've been thinking of you here Heady. Yours has been a good voice for both of us, as are many others here.

Wishing you the best.




Feel for you Kevin. PSP is evil. But thank goodness for chocolate. I think Heady suggestion of trying to carve a tiny bit of time for you whilst carers are in is really positive.

Take care. Sending every positive thought I can to the two of you


Kevin_1 in reply to Tippyleaf

Hi Tippyleaf

You and the others here make this site the wonderful place it is.

Thanks for the positive energy - It does make a difference.

Yes, chocolate should be on the NHS... Note to self, write to M.P. about that.




Oh dear, Kevin, what a worrying time. Sending a big hug to you both. X

Kevin_1 in reply to Robbo1

Hi Robbo

Thanks. We're thinking of you too.

Having health issues on top of caring must be tough indeed. If I remember correctly you work as well. Your strength is astonishing. Please have a small bow of deep respect from here.

We all have to "Stay Calm and Carry on" eh?

Hugs to you



K_1 I know .....I liken it more to a mudslide settling in the nooks and crannies of their brain stem. The ability to maintain wakefulness is one of those nooks and crannies...At any rate I am sorry for both you and Liz that it's happening.....B wakes up about 11am and goes to bed by 9 pm and has 5 or 6 hours of sleep in between....In fact he looks like he is always must get his attention...out of his sleepiness...


Kevin_1 in reply to abirke


Mudslide - What a great metaphor. It describes it perfectly.

When Liz hasn't had attention for a while I give her a warm hug and a kiss and she smiles before snuggling down contented. Those moments are the best of caring I guess.




abirke in reply to Kevin_1

So true. B used to say "thank you" after finishing his PEG meal. That made me so happy.... Now I am not sure he even knows I am doing anything....very sleepy....

I have a friend with a paraplegic husband and they use an agency that cover full time care, they are Eastern European and have been brilliant. There are always two carers doing a month on and a month off when they go home to their families. It seems to work for all parties. xxx

Kevin_1 in reply to Katiebow

Hi KatieB

Well these folk are simply head and shoulders better than the other agencies we have had. They work to get everything perfect too. The wackiness just appears without warning and always catches me short, then laughing. They have brought a lot of laughter into this house.

Its good.


Better than a care home Kevin. Xx

Kevin_1 in reply to Katiebow

Oh, yes.

Like everyone here I intend to keep Liz here for as long as possible and then some more!


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