Good enough - an addendum

Thank you all for so many supportive and informed posts.

There was something afoot.

This morning Liz woke weaker and more fatigued than I have ever seen her.

She was pleasant and loving, but was as if very sedated.

She got up at 12.00 and by 1300 he needed to lie down.

I put music on for her instead of the usual telly and films.

She looked at me and said, "Its a step down isn't it?"

She's a fighter though... She would only accept a quarter of her clonazepam choosing to be as awake as she can be.

Damned PSP!

Love to you all.

Kevin

40 Replies

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  • Dear Kevin,

    You have been such a tower of strength to us all, my heart goes out to you, I understand exactly how you're feeling, it's so hard to witness someone you love so much decline....

    Sending you both my love....Pat xx

  • Sending big hugs and a whole lot of love to you bothxxxx

    Hx

  • Hi Kevin. So sorry things are less good today but I am hoping it is just a temporary blip. As we have all said, there are good days and bad days so I hope tomorrow is a lot brighter. Look after yourself, Kevin.

    Margaret

  • Kevin

    I am so sorry to hear that Liz has not been too great today. She is so aware of it though? That is good as she is not just giving up. Or is it bad? I don't know if I know anymore.

    I am so very sorry for you both. PSP is really a kind of torture for those who have it and their carers?

    A big hug to you and another one to Liz. She is a brave lady just as you are a brave man.

    Marie x

  • Kevin this PSP has good and bad days, hopefully Liz will be much brighter today? Just realised it is 12.30. Thinking of you both. Yvonne x

  • Feeling for you both! Hope it will be a better day tomorrow.

    Big hug for you both!

    Jen xxx xxx

  • Keep on keepin On Liz....Kevin and us are here for you baby....same for you K1

    AVB

  • Hugs AVB and thank you.

    xx

  • Biggest of hugs to you & Liz.

    Day by day, hour by hour with none ever being the same. It is a journey with no plan but lots of bumps and thumps along the way.

    Xxx

  • I like that SP :)

    I guess I should have bought a first class life ticket eh?

    xx

  • Hi

    This is the cruelest disease, you think you are prepared for anything, but even the slightest deterioration is so scarey , try to enjoy the day. The only good thing is when you are inthis stage of acceptance there is I think some peace.

    Bit philosophical today I better stop that!🐝🐝🐝

    Julie x

  • No Julie - You are spot on!

    Acceptance is everything really.

    The number of times I have suggested that to my patients!

    I am usually good at it, but with PSP - Well that is a test indeed and I struggle to accept.

    But, the Sun is coming out and my greenhouse is full of seedlings promising the joy of flowers and some nice tomatoes and veg. Flowers and food to present top my Lizzie.

    Kevin

    X

  • Oh Kevin , I know exactly how you and Liz feel . I witnessed another decline in my mum on Tuesday ... so sad . Really heartbreaking part is that like Liz my mum is aware also. My heart is aching a lot lately and I sob often in private but put on the best face for mum and make it as good as I can like you do for your Liz.

    Hope you have a good day today the sun is shining here in Warwickshire !

    Love and warmth

    Jude

  • Thanks Jude

    These declines are horrid.

    It is heartbreaking.

    I too feel so tearful as I watch her struggle.

    Liz is not up yet this morning. I have taken her to the commode a couple of times and she is so tearful as she struggle to do what was easy a couple of days ago. I am going to make her an extra special lunch.

    Its just starting to peep out her in Herts. I think I'll put the Sweet Pea seedlings in the trough where Liz can see them from the couch. She loves Sweet Peas.

    Love and hugs

    Kevin

    xx

  • Aww Kevin, I'm so sorry to hear this, hopefully it's just a one off.......?!!

    Sending you and Liz huge cuddles and much love x

  • Thanks Amanda

    You are lovely.

    Liz is a little tearful today. She knows she has had a step down and struggled so much to use the commode.

    Big hugs

    Love

    Kevin

  • Aww bless her!! Such an evil illness!! X

  • Best wishes to you and Liz, PSP can step down suddenly but from Margaret's experience it usually improves slowly to almost the same level between steps hope Liz better today.

    Tim

  • Hi Tim

    Yes, there is often an improvement after the fall. A month ago Liz could no longer feed herself with a spoon a week later and she could manage it.

    Thank you for reminding me.

    I hope you are doing OK.

    Warmly

    Kevin

  • Chris has these ups and downs too. Its heartbreaking because we always have to be prepared and, like Liz, Chris is aware of everything.

    Hope shes better now .

    love, Jean xx

  • Yes 'damn it' Kevin, feeling so sad for Ben the last few days as his condition has deteriorated considerably over the past few weeks and all he wants to do is sleep. He has no interest in going out and has to be cajoled into leaving the house. Is Liz interested in doing anything other than sleep? It feels very lonely just being stuck here in the house waiting for him to wake for his lunch, always soup and an easy to swallow desert. He is always saying 'I'm getting worse aren't i' so so sad.

    Love Kate xxx

  • Oh, Kate

    That echoes us so much.

    Caring is lonely.

    And, yes its the fact they know what is happening to them. Heart breaking too. They are incredibly brave.

    Liz can just manage a little non-soft food. I have a surprise for her when she get's up. Latkes made with a little garlic and pepper dusted in parmigiana cheese. Followed by home grown red currants briefly simmered in sugar and poured over ice cream. Healthy diet can go hang today. I love to make nice food for her!

    Well, we have to soldier on, but I let myself be tearful too.

    Strength to you Kate

    Love

    Kevin

    xx

  • Mmmm that sounds good Kevin, I have reverted to M&S or Waitrose ready meals, I liquidise them and they taste good but look disgusting, Ben seems to enjoy them and that's all that matters. He has far too many deserts but the speech and language therapist is in full favour of letting him have whatever he likes as long as we attend to oral health. There is a lot of cream involved to keep his calories up.

    K xxxx

  • You know, I expect you have gone the smart way.

    I probably make a rod for my own back. I cook from scratch.

    Cooking and gardening are the two things that keep me sane, but it's a lot of work.

    I enjoy reading books about Bronze Age Chinese thought, but caring is too distracting so I have put that to one side for now.

    I'm thinking as I'm writing. I think I might put some ready meals in the freezer. That can't be bad for a difficult day.

    Laughing about the liquidising... I make dishes with contrasts where the sauce, for an example, makes a nice contrast to the main component. You should hear my precious sighs as I mash it all up together!

    Tonight is cheese and potato hash with chives followed by the remainder of the red current sauce stirred into plain yogurt. Liz told me it was a waste and it should go with more ice cream! No matter I have some chocolate to finish it off... A nice surprise for her.

    Thanks for the tip on ready meals... They are on the shopping list.

    Today was a good day with sunshine.

    Kevin

    xxx

  • I too enjoy cooking but have no joy cooking any more as we don't share meals together as I have to feed Ben. My standard meal is now jacket potatoes with various filling, accompanied by a large salad also a couple of glasses of wine involved too! I adore gardening, gave up my allotment when Ben was diagnosed so just concentrate on th flowers now. I have had my sons puppy for the last two weeks and he has tried to dig several plants out, will miss him when he leaves tomorrow as he is such a little cutie.

    Love Kate xxx

  • Gosh Kate - An allotment?

    I have been relearning this last five years after 25 years with no garden. Doffing my gardeners cap to you.

    I doubt I will do so much cooking when Liz needs special food. There is something different when cooking for others. A glass of wine or a beer is essential for me at the end of the day. When Liz gets to bed I sit and do very little but sip and chill down.

    Puppies are great aren't they. So entertaining an d loving.

    We have an elderly rescue cat who is entertaining in that she constantly finds ways to make us do what she wants.

    Love

    Kevin

    xx

  • Dear Katiebow,

    They say this is our next step too. Charles hasn't been outside since March and only then one afternoon. He also know it's getting worse.

    Prayers for you Kate,

    Cuttercat

  • Tough isn't it, I know I should encourage Ben to get up and out but it somehow seems a bit cruel as the effort is so huge that all he wants to do is sleep when we get to wherever we are going. No joy for either of us, get my mobility car on Thursday so hoping will be easier to get him out. Xx

  • Amazing to me how much our lives mirror each other's. Kate, my husband, too, has lost ground in the last few weeks and is so completely aware of it. And has become so antisocial, spending most of his time in bed. Incredibly lonely. Love and hugs to everyone here. ❤

  • Yep, here we are.

    Cuttercat

  • So sorry! No matter how much we know it's coming it is so hard to take.

    Wanda

  • Hi Wanda

    It is hard

    And it can be scary too sometimes.

    Wishing you both the best.

    Kevin

  • Sorry to here that your Liz is not doing so well today. Keep on keeping on... you have been a source of strength to many of us. Continue to love her the way you've been doing all the long through your words and actions.

  • Thanks Daddyt

    You too give much here.

    Today is a better day for us.

    I hope yours is good too

    Warmly

    Kevin

  • Kevin,

    You have been a source of inspiration and strength to me since I found this forum. Your perseverance in the face of impossible odds is incredible. You deserve greater credit for what you have meant to so many of us wandering this bleak wilderness. I feel for you and Liz so much that I simply want to cry when things are not going well. I am so glad to know she has you at her side for this terrible journey. I am sure that she is aware of this although she may not always be able to say it.

    It's amazing how adversity creates such strong bonds. I am still struggling c with my spirituality, but know that both of you are in the prayers I send into the great unknown daily, among so many others I have met here. You have no time or obligation to care about this loco Cajun across the ocean and yet you do. I was not sure when I found this forum that I had the fortitude to participate. You and several others (you know who you are) have come to mean so much to me. You have lifted my soul with your courage and love at the lowest point of my existence. I don't really know what I am getting at other than to thank you for being the brother I need. I no this is small consolation to you now, but I wanted to express these thoughts to you today.

    With my love and eternal respect, I remain,

    Steve

  • Steve

    I have just read your post out to Liz. We often do the forum together as she has trouble reading now.

    She sends a big hug and a greeting. And the best wishes that only someone on the same road as you can send.

    I will now think of you as my 'Cajun-bro'. I like that thought. Cajuns do have a reputation for good food, music, loving and laughing.

    Your post gave me more strength, but you know reaching across to others is only possible when others reach back. I think we are all fortunate in that this is such a reaching out place.

    Thank you too for caring about us. That means a lot to both of us on this difficult and lonely road.

    Thank you also for casting you thoughts at the 'great creative force'. For me it is energy which drives the river of life and cosmos ever onward. (Yes, I have Daoist leanings). I light candles to burn through the night for folk. A symbol and a prayer for light in the darkness. A hope for them. Though that tradition is fairly universal in many faiths it comes home to me from the many dark nights at sea alone and closing a dark shoreline looking for a light to guide me in. Historically the fishermen's families would set a fire on the shore and leave an candle burning in the window for someone lost at sea.

    With great respect also and much warmth.

    We are here for you to.

    Love from your British Cousins

    Kevin and Liz

  • Kevin and Liz:

    I read your response with tears of joy streaming down my face. So many good things have happened to me in the last two weeks that I feel utterly guilty and helpless when I read of other's travails but I will not question them or it. The ying and yang of our lives. The good news is that I may have found someone who could be my companion to the end. I don't want to over think it or jinx it. Yesterday I was happy and content for the first time in a decade. It took me all day to identify these emotions because I cannot remember when I last felt them. Spent all night just being together although she is currently working in the Republic of Benin and won't be back to the states for another two weeks. Lots of logistical challenges to be solved, but she is gentle, loyal, unafraid of IT and what it means for the future. She is so brave it takes my breath away. Last night she sent me a picture of herself lying on her bed in her pajamas with a big smile and a thumbs up. I cried when I saw it. She is younger than I, but remarkably self-possessed and wise beyond her years. Anyway, sorry to prattle on but the thought of her makes want to be the first man to survive IT. Quite a change from the half-suicidal and depressed man I have been, and that, along with my family here gives me hope, another foreign concept. Maybe whoever directs what happens in our lives has finally rewarded me with someone I don't deserve.

    Give Liz a big hug and kiss from me. Every day, good or bad.

    Your Cajun bro,

    Steve

  • Hi Steve

    It sounds as if you are making the best of it.

    I do hope you get much more happiness.

    Cheers

    Kevin

  • Dear Kevin,

    Each day is different, isn't it. Then you get one day when they feel good and you have hope. Rollercoaster ride is like Toad's wild ride. Twists and turns. But then eventually we know what will happen and that's the frightening part for both.

    PSP is indescribable, the absolute worst.

    My prayers are with you.

    Cuttercat

  • Hi Cuttercat

    Yes, its that ride with all of the crashes.

    Thank you for your prayers. That is a good thing.

    I've lost your thread a little.

    My last recollections were that you were in a very hard spot.

    Forgive my poor memory.

    I hope things have improved a little

    Warmly

    Kevin

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