Waiving not yet drowning


Liz and I have dropped off the radar again!

Liz came back from respite fully charged and then continued to be 'difficult' with me.

She then announced that she was going to go into care permanently and called her sister for assistance.

So on top of coping, poorly, with her behaviour and feeling emotionally exhausted I had the indignity of having to explain all of the reasons why it was untenable for Liz to go into care - lots of personal information.

He sisters are good people who try to be supportive to us though, but they live too far away to do anything practical and besides they are very busy with their own lives. The old story!

So I am running everything on the basis of 'only do what is necessary' . Trying to make a window in which to recover, again.

Waiving not drowning though.

Love to you all


35 Replies

  • Hi Kevin

    Could the difficulty be because she sees what you are going through?

    Have you talked to anyone about how YOU feel? Sometimes we are so concentrated on helping our loved ones that we forget about us.

    Hang in there and keep on waiving, we are all here to waive back


  • Hi Paola

    Yes, in part, that is right. She sees me struggle and then tries to help. So for example she will not ask me for help to go to the loo and then when she is desperate she has to ask. Of course by then it is a high pressure rush.

    And yes, she gets anxious when she sees me stressed and that makes her behaviour worse.

    Yup, I talk to my sister. It helps a little.

    But generally our lives have become pretty joyless. Humans don't do very well without a little joy. I worked hard to bring some fun and joy back into our lives. Right now I need to go slow and have as much time alone. Which I am doing now. Liz is toileted and fed and watching T.V. in bed.

    Cooking good food recharges my batteries too and I have a nice meal planned for tonight :).

    Thanks for coming back


  • I hear you Kevin, although it is not my spouse going through this I see the devistating effects it does have on everyone.

    Us women are a tough nut to crack when it comes to understanding us, add to that PSP and the inability to please the ones we love and you have a nuclear bomb in our hearts.

    You did hit the nail on the head when you said good food recharges, it certainly does, maybe during your dinner you and Liz can have a heart to heart.

    I hope you can have just a little happiness today


  • Kevin - you sound just like my dear Dad. So very sad - after years of a marriage filled with joy - for it now to be gone. No words to make it better....guess we all just have to endure the heartache & cope as best we can. I think what we're all going through is all part of a long painful grieving process. Sending you virtual hugs X

  • I so relate to the joyless, I can't raise a smile or hold a civil conversation for now. It's endless. I can't wait for CHC to kick in , I haven't seen the outside for two weeks. Best wishes, hope things improve.x

  • Although there are not 'stages' per se; I must say that this too will pass....why they get cranky , I do not know...but cranky they get...My husband did not pass through this... however he did perseverate on minutia which was quite tiring...So If you can hold on , stay strong...

    Please take care of yourself and do not take anything too personally...It's PSP, not her; not you .



  • Hi AVB - Wise words!

    Hangin' on in there still!

    Thanks and Hugs to you too!



  • Kevin I feel for you, PSP is the most horrible illness going, you don't know what the next day will bring, some good things, but a lot of horrible days, we all say one day at a time, but the one day gets harder and harder. I wonder if it was because of the rest bite, that she is punishing you, for her going? George did not speak to me when I came back from a week away? We need these breaks, otherwise we will crack, and that won't be any help for our loved ones. Kevin sending you a big hug and hope you both have a lovely dinner. I feel like my he'd is going to cave in, George keeps calling me, just trying to tidy up a bit ready for Christmas, grhhhhhh feeling rubbish. Yvonne xxxxxx

  • Thanks Yvonne

    Strength to you as well.




  • Well hello me ol mucker! Pleased your not drowning and been wondering how you both are?!

    You ARE doing a fantastic job Kevin!! Remember it's the Psp being "irritating" (polite word) not Liz!!

    Family living a distance, everyone knows about that I'm sure......

    You are a diamond and we all love ya! X

  • How are you Satt? X

  • Not bad thx Suze, how bout you? My dad is still here, bless him! X

  • Is he comfortable? How are you & your mum doing? X

  • Thanks Satt... I managed to climb back into the lifeboat today :)

    Liz finally calmed down yesterday and today she is back to her lovely loving self... as am I.


  • Oh Kevin, I know exactly how you feel. We are going through the mill here. Decision on Peg feeding needs to be taken. They are trying to sort out getting S this irrigation for his bowels, small trip to hospital, because GP refused to come out. In the middle of all this, S managed to write, "I have told you thousands of times, stop bullying me!" I'm afraid, that has taken me over the edge. I am at the end. Thankfully he is in respite this week, booked before the hospital admission, but at least he can recover, with nursing staff caring for him. Using the time to get Christmas ready and getting my head around the next step.

    We all know it's the PSP talking and the frustration of their illness, but doesn't stop it hurting and no matter how much support and understanding we may get, it does affect the way we care for our partners. I am working hard not to feel guilty, it's not S's fault and it's definitely not my fault (or yours) for struggling to cope.

    Sending big hug and much love

    Lots of love


  • I struggle with this issue too, Heady.

    I can't let him off the hook and I know its not fair on him. But it does feel like a personal attack. I find it easier to think it is a personal attack but who else can he attack and they will still be there ?

    We just have to get on with it, don't we ?

    Lots of love, Jean x

  • That's my mantra too Jean

    "It is what it is... now get on with it."

    Then sometimes I get a flat tyre and that too 'is what is is'.





  • Big hugs back Heady

    Your struggles certainly put ours into perspective.

    Liz is back to her calm and loving self today. Happiness returns for a while...

    Lots of love


  • Hi

    Recently went away, last time respite in a local nursing home did not work. CHC funded 24 hr live in care which to be honest was cheaper, it worked so much better both for him and me, might be worth a try next time. I think women are very different to care for than men, dare I say it I think men are easier both emotionally and practically! I felt this also during my nursing career. Wow that will open up the debate !!!!!!!! Xxxx

    Have a great day


  • I know I should be able to think of lots of apt replies, but words are failing me. Visited S in respite. Not great, he really seems to have taken a downturn since the weekend.

    Had a very busy day, sorting Christmas. It's bloody tiring, out in the real world. It's 8.30pm and it's the first time I have sat down. Still wine tastes good.

    Lots of love


  • Big Hug, Heady.

    Love, Jean xxx

  • take it easy plz h=

    we woudel like uyou to be azboe t9 enjoy xma\as#

    hugs \and xxx to u h aznd s

  • Thanks jillannf6

    Thanks :)

    We will do our best!

    Hugs and love

    Liz and Kevin

  • Sending love and support to you Kevin, sounds like you need some TLC to see you through. I know exactly what you mean about the living In joyless world called PSP, I think that's what I miss most and it drags you down. I'm looking forward to Christmas when the family come for a few days, hope for a few laughs and fun with them.

    Look after yourself Kevin

    Love Kate.

  • Thanks Kate

    Thankfully Liz has returned to her calm loving self again.

    It is the difference of a storm and a sunny day. I reckon my limit is about five days of the former and then I start to go down. The lack of sleep on those days does not help.

    But today is warm and loving. I will treasure it.




  • Lovely day here too Kevin, makes all the difference doesn't it!

    K xx

  • Hi Kevin

    I've not written to you before but like many others have read many of your posts.

    While you're feeling low let me remind you of one of your tales which has stuck in my mind. It was of Liz falling out of her chair in the garden and landing amongst the herbs and just loving it. I haven't looked for that post but it doesn't seem so long ago either.

    Those are the memories which will sustain you.

    I'm feeling so lucky that Jon is still very amenable and easy going but I expect it will come to us sometime soon. You just have to make the most of what you have while you have it don't you?

    All the best to you both

  • Hi Richanne

    Thanks for reminding me. That, in hindsight is a wonderfully good memory.

    Liz is back to her relaxed loving self today.

    Blue skies again. I treasure these days.

    I wish you both well on your journey.



  • Glad to hear things are better again.


  • I so identify with your place, Kevin.

    I can't raise any enthusiasm for Xmas. We used to eat out a lot and enjoyed eating and talking. I'm afraid all the joy has gone. He eats like a starving man. Then needs to go to toilet or spits all over me.

    Its very boring and exhausting in our house, I'm afraid. And that's a good day !!!

    Love to you both, from Jean xx

  • Hi Jean

    Thanks for being there.

    Liz has returned to her calm and loving self... Life is good in this house today.

    Yes, that loss of interest thing just keeps growing doesn't it.

    "Its very boring and exhausting in our house" How wonderfully stalwartI wish I could be more like that sometimes.

    Liz is demanding the full works for X-mas...Decorations, tree, lights everywhere and a full turkey dinner.

    I have a surprise for her... lots of fireworks too. Though me being a little naughty I am thinking of having them on the Solstice, make the neighbours wonder... and no I am not a pagan... just a little mischievous sometimes. I really don't know what I would do if it turned out that all me neighbours were pagans... perhaps have them on X-mas eve then.

    Love to you too Jean



  • Hi Kevin - I know how you feel my mum is forever being difficult with me and even though I have 2 young children I cannot find the joy and if it wasn't for them then I wouldn't even bother with Christmas this year. I'm struggling at the moment but find it really hard to express my feelings to anyone .

    You are doing a wonderful job and from the posts I have read you have helped so many of us on here - I thank you

    Sending you and Liz a great big hug xxx

  • Hi Sophiejo

    Thank you.

    Things are much better here today... lot's of warm hugs and hapiness.

    Two children too. I take my hat off to you!

    Big hugs to you and yours

    Liz and Kevin


  • Hi Kevin, so glad things have got better, long may it continue. Like your idea of the fireworks. Hope Christmas goes well for you both. Lots of love, Nanny857 x

  • Thanks - I was getting so desperate.

    Wishing you a good Christmas and New year too.


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