Feeling so sad !

[NanBabs]

Hi everyone,

I have just come home from visiting P in the nursing home where he`s been for 16 months now. Most days, if he whispers half a dozen words, I think it`s been a good day. However, today he was very aware and said quite a lot (for him) including " I wish I was normal again".

That completely floored me because P hasn`t been `aware` of much, including his condition, for the past 2 years ! All I could say was that I wished he was normal again too.

I feel heartbroken because I could cope with it all when I thought he wasn`t aware of what was happening to him but now my heart bleeds for him.

I just had to share it here because I know you will all understand.

xx

[Kevin_1]

Hi NanB

That must be a bit gutting.

Could it be that a lot of the time he is less aware and today he had more lucidity?

Did you ask him?

Yes, Liz and I understand exactly what you mean... We are surprised and I was hoping that Liz would slip into being less aware when things got worse so that she would, in a sense be spared that.

Hugs to you

Kevin

xx

[NanBabs in reply to Kevin_1]

Thanks Kevin,

I knew you would understand. He also told me off because I refused a jelly baby on his behalf (it would make him choke) and he said, "You didn`t ask me !". It is all a reminder how we should be careful what we say and do because we don`t know how much our loved ones take in even if they are unable to respond.

xx

[Kevin_1 in reply to NanBabs]

Your post had a great impact in this house.

A good one.

We are better prepared now.

Thank you

NanB

and hugs

xx

[Satt2015]

Aww darling course I/we understand

Simple heart wrenching

I believe all Psp patients understand everything just may not be able to respond 😓

I wish for ALL of us life was normal but it isn't and unfortunately it is what is and we have to get on with it (I don't mean that harshly)!!

I've had the exact same conversation with mum at least 4 times in the last 10 days

We can't reverse the situation (id give anything to reverse it) but facts are we can't! This is the 'normal' for us at the moment so we have to deal with it

My way of coping (as you know) is 🍷 Not good but again that's how it is!

One day life will change again for all of us

Just go with the flow, cry if you want/need to

But please darling remember it is what is is, we can't change it!

Huge hugs x

[NanBabs in reply to Satt2015]

Thanks Satt2015, I`ve just had my daily `tonic` but it hasn`t helped tonight - maybe I need another !

xx

[Satt2015 in reply to NanBabs]

Yep have another! 🍹 X

[NanBabs in reply to Satt2015]

Cheers !!

xx

[jillannf6 in reply to Satt2015]

OI AGR EE NDAZNNBABS

IU HAVE ANOTHER

LOL JILL

XXXX

[NanBabs in reply to jillannf6]

Thanks, I will. xx

[pzagy]

He is giving you the opportunity to hear what he has to say.....it is a gift he wants to give you...treasure those words

Paola

[NanBabs in reply to pzagy]

Oh I do Paola, it is so nice to hear him say something spontaneously, rather than just in answer to a question. However I suspect that the words will haunt me too !

xx

[pzagy in reply to NanBabs]

Two days before my mother in law passed I was with her, the physio girls came, I hadn't seen her walk a long way for about a year. I didn't like to watch her walk as I was always afraid she would fall. That day when they started I had to look away as she headed down the corridore.

Half way through she was yelling my name, she wanted me to watch her. I ran up to her and encouraged her. I think that was the most special gift she could have given me..I wish she would have been able to say things that I would understand, I would give anything to listen to her voice one more time...

[vlh4444]

All I can say is that I completely understand how you feel. 💞

[NanBabs in reply to vlh4444]

Thank you, I thought you would understand.

xx

[DoreenC]

Heartbreaking and I know exactly how you feel many times I have asked my mum to give me one of your lovely smiles and had completely no reaction . Last night I said it and there it was a lovely smile. What did I do ? Broke into tears xxx

[NanBabs in reply to DoreenC]

I struggled not to cry, it was so sad to finally hear what he thought about it !

xx

[Yvonneandgeorge]

NanB this illness is horrible, how I wish that everyone was normal, and we could all enjoy our lives together. Sending you a big hug. Yvonne xxxx. I can feel your pain ❤

[NanBabs in reply to Yvonneandgeorge]

Thank you so much Yvonne, there are some days when it is really just unbearable.

xx

[Yvonneandgeorge in reply to NanBabs]

I know, I think we all deserve a pat on the back and a medal for the good job we do looking after our loved ones. Here's a pat on the back for you and a big heart ❤️ medal xxxxx

[Nanny857]

I agree those were sad words to hear, but take heart NanBabs in that if he's aware of his circumstances, then he is aware of how much you have looked after him, cared for him and how much you love him. Sending you love and a big hug. Nanny857 xx

[NanBabs in reply to Nanny857]

Such kind words Nanny857, thank you for your support.

xx

[SuzeW]

Oh thats really tough....poor you :-(. I had so hoped that the one 'good' part of this godawful disease was the lack of awareness that seems to be happening. I'm still holding on to the hope that my lovely mum is in some way anesthetised against the degradation & tragedy of it all. Sending hugs X

[NanBabs in reply to SuzeW]

That`s exactly what I had hoped - that he wasn`t really aware of what his circumstances were, but now I feel so bad for him.

Thank you for the hugs.

xx

[DoreenC]

Exactly what I was hoping SuzeW but I really so confused. I keep being told that it leads to Dementia. My mum is so close to the end now and she is on medication to free her from the awful agitation she has suffered but all others mess have been removed and she is barely eating and drinking

[abirke]

I know how you feel, NB,

I cried in front of my husband the other day. His weak voice and him desperately trying to say what it was ....I just burst into tears....He stopped talking, making me feel more miserable

AVB

[NanBabs in reply to abirke]

I tried hard not to show him how distressed I felt but it was so hard to stop my chin from wobbling !

xx

[abirke in reply to NanBabs]

someone...I think it was the chaplain at the hospital, said that it's ok to let them see you cry...a little bit anyway... so that they know how you feel ; that you feel sorry for them and love them etc...I think in a way he was right. I mean chin wobbling or a bit of a cry may be as good for them as it is for you....Not too much melodrama but enough to show deep empathy....The relief that crying provides for both the carer and the caree....I am sure there is a study on it somewhere....

[NanBabs in reply to abirke]

Thank you, I always try to be strong for him and keep an upbeat attitude but maybe I should sometimes let him see how miserable I feel too.

xx

[doglington in reply to NanBabs]

I agree with Abirke that it can help the patient to share the pain. Gives them permission to own their feelings.

Its a fine line though. I don't think it would help them if we show our despair.

xx

[doglington]

Yes indeed. Chris and I have had the same conversation. It is indeed heart breaking. If only we could give them hope.

love, Jean xx

[NanBabs in reply to doglington]

Thanks Jean,

All I could say was that I wished he was `normal again` too and if I had a magic wand I would certainly use it to make him well.

xx