No emotion

[richmond1]

Mum has always shown love and affection, she doesn't show any emotion now she just doesn't seem to care, this is really hurting me, mum was diagnosed with late stage psp less than 12 mths ago, is this part of psp if so its so cruel family has always been everything to mum. All I seem to do is cry

[easterncedar]

I'm so sorry. Please don't be hurt by your mother's apparent lack of emotion - it IS the psp. Some folks go through a period of hyper emotionalism, most seem fixed and apathetic, sooner or later. The real person is still in there. I sometimes hope that my guy's apparent stoicism really means he isn't suffering as much as he might be...and then he surprises me with a revealing statement and I know he is still feeling it all, just not expressing it. Oh it hurts when he does. This disease is cruel - but there are worse things. Hold onto your mum. She does need you. Remember all the love and be glad of it. Be strong, and keep in touch. Love and peace, Easterncedar

[richmond1 in reply to easterncedar]

Thank you for your kind words, it is just so hard watching her deteriorate just one more thing this psp has taken from her

[NannaB]

Hi Richmond, I agree with all Easterncedar has said. My husband appears to show no emotion. Think of how body language shows us how others feel. My husband can no longer smile, he finds it impossible to move his mouth other than open and shut, he can't laugh, he can't look me in the eye because he can't move his eyes. He can't speak to say how he feels. I know however that inside he feels the same as I do. Sometimes, when he has an "accident" and I am cleaning him up, I tear will run down his cheek. I've ask him if he is sad and he will put his thumb up. When our grandchildren arrived a tear appeared. I asked him again if he was sad and his thumb went down so I asked if it was a happy cry and his thumb went up.

I'm sure your mother feels the same inside as she always did but can't show it so although it is very hard for friends and family to see deterioration in their loved one I think it is very important to show them they are still loved. My husband squeezes the hand of those who touch his and there is real power in his grasp. It surprises some who haven't seen him for a while as although I tell everyone he is the same man inside, it is difficult to see it until they feel that grasp.

I know it's hard for you but try not to cry in front of her. She is your mum and wouldn't want her child to be sad, no mum does. Tell her you love her but also tell her about your day and what you have been doing. Talk to her as you would if she didn't have PSP. You get used to chatting and not expecting a reply after a while.

Sending you a big hug.

Nanna B

[abirke]

Yes. unfortunately yes. Their behavior, their affect, their gate, their problem solving skills all seem to get frozen! HOWEVER though they may/will get some dementia, they are still able to hear and understand they just can't seem or care to respond. But its ALL PSP's fault! not your mums not the drs and certainly not yours! All you can do is show her the love you have for her....She still loves you dear....steel yourself up and continue to make good memories....but go ahead and cry here we are all hear for you....

Going Through the Same Things,

AVB

"He heals the broken in heart, and binds up their wounds." Psalm 112:3

"Lo, I am with you always, event to the ends of the world." Matthew 28:20

[richmond1]

All your replies has brought tears to my eyes, thank you all for caring, thank goodness for this site xxxxxxx

[Yvonneandgeorge in reply to richmond1]

Richmond my heart breaks for you, we are all going through this, and I hate this illness so much, it just takes and takes, I agree with what has been said, just keep telling her you love her, and just talk to her, sending you a big hug, Yvonne xxxxxx

[Doglinton]

It is. My husband was always very loving and expressive and appreciative. I think that the inability to communicate is one of the most difficult bits for me to handle.

Sometimes I'm sorry to say I've shouted " just answer ! "

When he can he tells me how hard it is for him. He thinks clearly but can't find the words.

Its really hard.

love, Jean x

[cabbagecottage]

o I am so glad this subject has come up this morning . i was feeding John his breakfast . Well it's feels more like trying to post a parcel through a small letterbox !!

There was very little response . I worry then that I am force feeding him.

I even thought that it wouldn't matter whoever was feeding him . It does to me of course .

tHere is no show of emotions , like Nanna b says no smile , it was his crooked smile and twinkling eyes that attracted him to me in the first place .

I find it hard to sound if I am happy or enjoying myself . if we have family who are talking about how much they enjoyed their holidays it goes through me to think he might also be thinking and getting upset that we can no longer do the same things .

I am not upset for myself , that doesn't worry me at all as long as I still have him by my side .

SOME people tell me you got to have a life it's passing you by when someone has been such a big part of your life that's not so easily done is it .

I hope I am not sounding sorry for myself .I am not at at all .

We had a few bad days where there was little response and it felt very lonely . then he suddenly called my name as I was in the kitchen , quite loudly I was over the moon and promised myself o won't get frustrated if he has a day where he keeps calling me and when I get to him he doesn't answer me . Lol. a well that's what I tell myself now . Sending lots of love to everyone

[Katiebow]

I think that not being able to communicate in the way you used to is one of the hardest part of PSP, it makes you you feel very lonely so goodness knows how the PSP sufferer feels not being able to properly express themselves.

[Heady]

Hi, I agree with everything written. It is this evil, rotten, stinking, #######' $$$$$$$,,%%%%%%, and every other blip, blip, word that I can think of!!!! It is SOOOOOO hard to cope, not knowing what our loved ones are thinking, feeling and the awful thought that they know exactly what is going on! I'm afraid, there is nothing we can do, except show as much love as possible. Don't be afraid of your tears, they are what is keeping you sane! I spend hours crying, some days. Others, well you cope because you have to!

Family is still the most important thing for your Mum! Show her what a brilliant job she did, bringing you up so well. Be happy, be sad, don't hide your feelings, make sure she knows you love her and you will support her through this terrible journey of PSP.

Lots of love

Heady

[richmond1]

We've got through everything psp has thrown at us, mums got a peg tube for feeding she does not mobilise spends all day either in a wheelchair or her recliner chair, through all this she's had her sad days and her angry days but she's told us how she's feeling and I've been able to talk to her, so this is for me the worst part of psp not knowing how she's feeling. I'm not feeling sorry for myself, I'm just feeling abit useless and don't feel like I'm supporting mum. I know my mums still there and is fully aware of things, it's just a change that we have to deal with

[abirke in reply to richmond1]

You are not useless!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[PUTLAND]

Yes its a horrible disease. I ask my husband a question and hope he will nod his head for yes or shake for no. but it never happens its so hard and sometimes I get so frustrated and feel like crying, but I know its so hard for him as well. Its good to be on this site as we all can share our feelings. Take care.

[blackcushion]

I feel your heart break, its a rollercoaster of emotions I lost my loving mum 15 months ago , I still come on this site everyday to read everyones posts and read all the heartbreaking stories that we can all relate to. Mum was diagnosed with psp just 10 months before she died what gets me through it is I had 10 months to be with mum everywaking hour and to tell her how much I loved her to hold her hand lye down and hug her while in bed and to tell her how sorry I was for being a pain in the ass teenager. If mum had died from sudden heart attack I wouldnt of been able to say all the things I wanted to say it helps me to come to terms with it all I love and miss my mum everyday and it is a cruel disease and hard to watch your loved one suffer . Sending hugs xx