PSP Association
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A lipstick heart day 💖

If I had a paper calendar I would put a big red heart in for today with lipstick! 💖

My visit with Liz was wonderful.

Liz actually tried to smile when I found her in the drawing room at the home.

We went to her room as usual and she made a Herculean effort to hug me. I tried to hold back the tears.

I gave her the news and asked her for her news - Twenty questions style to give and share her views. She answers with hand squeezes and blinks and finger movements. It is miserable to watch the struggle as she tries to communicate, but today she was trying to communicate! :)

I have spent much time questioning myself about exactly why I need her not to be grumpy, but to be loving.

I expect it is obvious to everyone but me. When she is hugging and smiling we can make a warm loving place where she is cherished and safe, wrapped in love and care. When she is 'angry' she is alone with anger and the suffering of the illness... a horrible place where she suffers alone.

At one point she took my hand and very slowly brought it to her face, rubbed her cheek and kissed it. It took her so much concentration and effort. I had tears running down my cheeks. Later we shed a tear or two together about it all.

A wonderful day...

Thanks to all for the support here - It keeps me going through the bad times.

Warmly

Kevin

💖

33 Replies
oldestnewest

Indeed a wonderful day for you and Liz, Kevin. Have to say I read your post and at the end I had tears, so unable to say more. Hugs Jxx

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Ditto from me, as well! Wonderful day, indeed! 💕

xoDorie

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Oh Kevin now I am in tears! Poor Liz! You know what we tell everyone that people are still in their bodies and understand? Well you have just proved that today. Or should I say Liz did? So when she is grumpy or angry remember it's the illness not Liz? Remember today! Happy belated Valentine's Day!

Hugs to you.

Marie x

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Hope you are keeping well Marie

Hugs 🤗

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Tilly I am well at present but getting colder looking at the snow fall! It is supposed to get worse on Thursday. Great to know? Have you got snow?

Plus I have a new cooker being delivered tomorrow! Hope they don't fall on the driveway!

Last week I fell over in the bedroom and have been in pain since. Well at least until today. It has started to ease off thank goodness. Talk about feeling old! You realise how truly awful it is when you can't do things unless you put up with the pain. Makes me think of all our loved ones and what they went through or are going through. They are all so very brave aren't they?

How about you Tilly? How are things with you both?

Marie x

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Just edited my post!!! It said something about falling in love....😁. I promise I haven't! I did fall over though so it has been changed! 😄.

Marie x

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My screen has gotten so blurry.

I am happy for you and Liz, Kevin. That is love, for sure.

Thanks for sharing that. Big hugs to you both.

Peace, Sarah

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Cherish the moments Kevin. Ruth x

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Ahh that's lovely to read. X

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Brought up so many memories for me !! Tears and smiles !

How reassuring for you both.

love Jean x

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Your posting warmed my heart.

Thank you!

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Bless you both Kevin, breaks my heart reading this!

Fxxxing Psp stinks!! X

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Oh Kevin, however much this condition takes over, there are still good times to cherish and remember.

Love to you both.

XxxX

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Kevin this has brought me to tears reading this. Every word resonates with me and I am sure many others on this site. When we have a glimpse of our loved ones showing connection and love towards us you realise that they are still them💔 my mum did a similar thing to me by taking my hand and putting it to her lips to kiss. I was both heartbroken and elated at the same time. Thank you for sharing and giving us hope. Love to you and Liz. Xxx

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So pleased for you Kevin. Thanks for sharing even if did reduce most of us to tears😂

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Lovely Kevin.

Lots of love

Anne

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Oh that's so nice. I'm really glad that you had a really good day.

I can appreciate the effort that went into the hug, when I used to get home from work, David would have his arms on the arms of the chair, and I would lean into him putting my arms inside his on the arms of the chair so that he could raise his arms and squeeze in on mine, it became our way of hugging as the PSP progressed, especially as he couldn't cope with my weight on him if I tried to lean in from outside.

You are so right about the anger. It is much nicer to have the pleasant partner and not the angry one, but as you know, at least we know it's the PSP and not real anger.

Here's to some more of the great days!

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Lovely Kevin, so happy you and Liz had a happy day, here’s to more happy days for both of you. Yvonne xxxx

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Beautiful. More days like these please x

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Oh Kevin how beautiful I am sure you will treasure those moments forever.

Sending you a big hug 🤗

Tillyhugs x

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A day to cherish Kevin and maythere be many more. It must feel wonderful for both of you when you are able to show your affections for each other, it's a basic need in all of us and it's the thing that I find the most difficult to deal with. I would love Ben to be able to put his arms around me and give me a cuddle but it's not going to happen as he can barely move his arms.

Much love to you both

Kate xxx

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Thanks for sharing Kevin.

Your message came at the right time.

Hugs

Luis

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Wonderful Kevin ! Brought tears to my eyes too - it means so much when our loved ones struggle so hard just to express their thoughts and feelings.

Thank you for sharing.

xx

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So glad you had a great visit, Kevin. Something wonderful to share...bless you for that.

Best of regards,

Adrianna

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Dear Kevin

That sounds like a very special and lovely visit and one to hang on to. I hope you have put a heart on your calendar for that day.

Love

Ali B

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What a wonderful moment to capture. And Liz being able to summon up the strength and concentration to do so shows how much she loves you and knows all you are doing for her. And maybe a lesson to us all (even when PSP is not involved), that when so much is stripped away it is the very basic gestures, feelings and communicating with each other that bring the most joy, and to make sure we really give enough time to really "feel" those moments as I imagine remembering them will make the hard times a little easier to bear. I truly hope you have many many more shared special moments xx

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Oh Kevin, so heartbreaking! What a long and awful struggle for both Liz and you :-(

Your insight is amazing... You understand deeply what's happening. And Liz clearly loves you very dearly. Bless you for being so faithful to her.💞

Anne G.

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that gave me the biggest warm smile

love to you both xx

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How lovely - a tiny ray of sunshine so uplifting after the grumpy days. Wishing you many more special moments together

Love Tippy

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Hi Tippy

Thanks.

It is magnificent.

I had thought I had lost her. That all we had was some PSP presentation of anger.

This is a wonderful ray of sunshine breaking through the clouds.

I doubt it will last so very long.

It is a wonderful closeness.

Like a window

A wonderful unexpected gift in this misery.

Warmly

Kevin

x

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I just read this Kevin....tears are running down my cheeks as well.....love so bitter and so true it brings life and the death of you....sorry just got poetic i guess. I can just imagine how wonderful your day was yesterday.....I am very happy for you and for Liz. For a moment she was living PSP free as she was ensconced in your love....Amen

Keep Doing Well

Andrea

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Hi Andrea

Thanks - It was total magic.

Hugs

Kevin

xx

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What a beautiful day that was. Hoping there are more of them. Xx

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