The vagaries of PSP

The vagaries of PSP

Back in March V was sent home from the hospice and my daughter and I were told to prepare ourselves as they thought V would only survive ten days to a fortnight . Well here we are in late May , once again back in Topsham on the Exe estuary taking in the sea air and sitting in the sun .I won't pretend V is the same V she was even a few months back but she is a determined lady . Sometimes she eats very little and sometimes she seems to manage to get down the most unlikely things and without choking ! The hospice palliative care nurse looks on in awe and amazement . At night she has muscular spasms and often stops breathing for up to a minute and in the silence we think is this it ,then off she goes again and determinedly wakes at three am declaring she is awake and not asleep ( this she will go on repeating for maybe an hour until we finally surrender and get her up in her chair . I say we , it is either me a long suffering carer or a Marie Curie nurse although strangely she often sleeps through the night when they appear . )

So there you have it - every day is different , one minute uncommunicative and unresponsive and later making a totally appropriate response to someone else's conversation which she has been earwigging on . I no longer know wether I am coming or going but one thing I do know is that the next person to say " have a lovely day " or "any plans for the weekend ?" is going to get both barrels from me !!!

19 Replies

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  • What an exhausting see-saw you are on, George. I cannot imagine how you are coping with all the changes in V's condition. It must be very frightening but it's so lovely to see the picture of her out and feeling the sun on her skin. Long may it continue. Look after yourself, George.

    Margaret

  • Hi

    We have the same.

    Liz now can understand and see things about her behaviour which she could not for two years. Its most weird she has just had a step down in being able to talk or transfer and suddenly other awarenesses come on line.

    I am so glad you got extra time together.

    Today we sat in the sunshine in the garden... Liz dosed and woke, listened to the chattering water feature and watched the wildlife... her cat came and stretched out on the warm paving nearby... Just being near her... They had quite a conversation at one point!

    I pottered around the garden planting stuff out and the world was good.

    We had dinner on the patio and she talked a little about PSP and how much she enjoyed sitting in the garden.

    Such a beautiful window... yesterday was carers hell... What will I get tomorrow?

    PSP... I am learning it is totally not predictable.

    Warmly

    Kevin

    Lovely photo by the way.

  • Yes, Kevin, since Charles is eating less his brain is more active. Who knows!

    It's the ups and downs but I like the alertness with less food.

    Cuttercat

  • PSP is so weird.

    So glad Charles is brighter.

    warmly

    Kevin

  • Oh George you must be beyond shattered.

    So good the weather let V enjoy the sea air and a memory for you.

    I used to imagine PSP as moss growing over Des,s neurons but realised it was more like clouds that can blow away for a few hours and then come back.I treasure the time he spoke again after the long silence tho' the first words were "Oh Bugger" as he lay on the floor!

    One person that got both barrels from me had said "i do admire you" I was furious she knew nothing!

    Only keep an eye on this site to know how a few old friends are doing.

    Love Pauline x

  • Bless you both Georgepa!! I'm pleased you manage to get out together but how on earth you do it, astounds me?! Well done you!! Psp is so bloody evil and scary!! We never know what the next hour will bring.....it's literally like living on a knife edge 24/7! Hugs darling x

  • She seems to be demonstrating the determination to surprise that you have told us. What a girl !!!

    How exhausting, George. Big hug from Jean x

  • Oh Georgepa, that roller coaster again. I know it's hard but it's so good you can still get out and help V feel part of what's going on. Folk have told me that's what kept C hanging on for so long but I have no regrets even though some days I felt I'd go first.

    You must be a better "driver" than me Georgepa, or is that a manual chair? I think C would have ended up in the sea if I'd walked him along that path. Looking at the photo, C sat in the same position with his arms fixed. Two days before he left me, all his muscles relaxed and his arms flopped by his side and I could move them easily. I'd forgotten what he was like relaxed and it was so good to see him like that again for those couple of days. It's warming up a bit now so hopefully you won't have to struggle with too many clothes soon, making things a tiny weeny bit easier.

    Lots of love

    XxxX

  • My husband is with psp since seven years and on peg tube since two years and in similar position . We don't know how the disease is progressing and very unpredictable. We have to deal with the day as it comes.

  • Great Picture hope you both can enjoy the summer together without too much stress, had similar experiences with M and MC night cover before she moved to nursing home a year ago. Enjoy while you can. Best wishes to you all. Tim

  • I do miss that roller coaster with my wife (been gone now for almost 11 months). I know how exhausting it can be. But boy would I love just one more ride with her. Love and hugs to you both.

    Ketchupman

  • Oh God this so tough on you. We all need a good night's sleep to be able to cope next day. Haven't got to that stage yet tg. Just don't know how I'll cope.

  • I'm with you buddy! Blessings for you and V. Each night we go through the same thing gasping for air and then sleeping. Ow. Take care and know I'm thinking of you both.

    Cuttercat

  • George you are both having a time of it? I am so glad you managed to get V out in the sun though. It was something which used to upset me that I was unable to get Garry out for almost a year. Not even to sit outside.

    The past few months prove what I think most of us know? That the medical profession have no idea what PSP is really like for those who have it or their carers. It's stressful enough without being told your loved one only has a couple of weeks and here she is in May?! She is strong as you say. Also she is lucky to have you.

    Take care of yourself though. You must be worn out.

    Marie x

  • George you are the best, you seem like the most ideal husband, things that you do for V I take my hat off to you xxxx

  • We are the same . Have had palliative care for John for 15 months. I apologised to the ch for being an embarrassment to them , ..

    not o vet till the fat lady sings , we are having same problems. The chocking waiting purée and thickened drinks as as when responsive enough. Very unpredictable

  • John hasn't been outside for five years mostly in bed . . We have the first years CHC assessment albeit three months tomorrow so fingers x.

    The coordinator is going to try to get another sit for me on Mondays along with wed and fries for three hours . Possibly a night sitter even ,.

    I have carers three times day I get him into bed myself if he is already out .

    Still not got the peg or saliva pump Bev , although there is talk about the pump now . .

    Every time we get the choking episode their ears must be on fire.

  • The picture portrays a determined lady indeed! What great care you have given her George....I too feel both barrels coming on when greetings of innocent ignorance slap me down.....and then I walk away sometimes with a fake smile sometimes unloading at least one barrel....Usually I leave that for you all but I truly do know how it feels...as we all do....the guilt of wanting this to be over and the same amount of fear and sadness knowing that it will end...

    Isn't it wonderful to have this site in which we can unload both barrels and still be loved

    Sending you and V all my love....both barrels ;)

    AVB

  • Thanks AVB

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