So quiet lately: This was the first week... - PSP Association

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So quiet lately

psplife profile image
29 Replies

This was the first week that my guy has been very, very quiet. He says he just doesn't feel like talking. His "yes" and "no" are just mumbled or head movement. He was still interested in two outings this weekend, but seemed so distant. It gets lonely. Bummer! Makes me sad--I'm losing my guy.

Nikkie

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psplife profile image
psplife
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29 Replies
easterncedar profile image
easterncedar

Me, too. i have told him so, trying to encourage him to speak, but he can't, I guess. I miss him sometimes so terribly.

psplife profile image
psplife in reply to easterncedar

easterncedar

It's awful. I try and encourage him to speak also, but he just has no interest. It hurts my feelings, but I can't take it personal because I know it's this awful disease taking him away from me one piece at a time. I just need to entertain myself at home so I don't let this get the best of me too.

Nikkie

Yvonneandgeorge profile image
Yvonneandgeorge in reply to psplife

Nikkie yes it is horrible when they don't talk, makes you feel so lonely, George talks very quietly when he does, but normally just looks at me, sending you a big hug Yvonne xxxxxx

psplife profile image
psplife in reply to Yvonneandgeorge

Thanks Yvonne.

His eyes even look sad and I can't help him and can't fix it. Drives me nuts.

XOXOX

Nikkie

aicebeall profile image
aicebeall in reply to easterncedar

hi eastern cedar, like I try to say, love you, alice

Heady profile image
Heady

There are lots of "worst parts" to PSP, but I really do think the loss of communication is the biggest. S hasn't really spoken for a couple of years now. Yes, it is bloody lonely!!!n this last week, he has suddenly perked up and has managed a few words. I have been walking around on cloud nine. Suddenly I'm not so tried, I can cope with a lot of the dire problems in my stride. All because he spoke my name. Even the dog is in shock, when S called him, he has never heard him speak before, he is a year old!

S often use to say, he didn't feel like talking, or he had nothing to say. This from a man that could talk the legs off every donkey going!!!

I am away now, S is in respite. Just hope this spell of being able to talk, lasts when we get back home.

Lots of love

Heady

Patriciapmr profile image
Patriciapmr in reply to Heady

Enjoy yourself Heady, have a good rest. I'm still waiting for my respite time, by the time I get it (or even if) I'll probably be on my knees!

Love and hugs....Pat xx

NannaB profile image
NannaB in reply to Heady

Have a wonderful time away Heady.

X

Nanny857 profile image
Nanny857 in reply to Heady

Have a lovely time Heady and I too hope S is still talking when you return. Nanny857 xx

Robbo1 profile image
Robbo1 in reply to Heady

Have a lovely time, Heady, you deserve it ! X

psplife profile image
psplife in reply to Heady

Have a great time Heady. Rest and enjoy because you deserve it.

XOXO

Nikkie

Patriciapmr profile image
Patriciapmr

It's a lonely road isn't it, you feel very alone most of the time!

Sending you a big hug....xx

NannaB profile image
NannaB

It is very sad. he is still in there though. C hasn't said a word for ages but yesterday as I was chatting away to him I asked him if he was chatting to me inside and his thumb went up. I do this regularly as one day when he could talk, I asked him why he never answered me and he said he was answering inside. I know he is not the same as when I married him but he is the same man. The poor chap has to listen to me rabbiting on and must be so annoyed he can't tell me to stop talking.

Sending you a big hug.

X

psplife profile image
psplife in reply to NannaB

I just keep chatting too because I hate silence. I bet my guy is doing some internal talking too. I need to ask him.

XOXO

Nikkie

Tttp profile image
Tttp

Hi Nikkie, sad when they stop talking my brother does that he try's to answer me at times and will tell me sorry I can't talk, breaks my heart as before the PSP he talked so much that literary you could not get a word in at all so. It's such a horrible thing, I live along so I am kind of used to quiet, but I feel bad for my sister en law as she feels alone as my brother just does not talk, Nettie

Doglinton profile image
Doglinton

I also find the loss of communication hardest - as if he's gone. Yesterday I asked if he wanted to talk. Long silence and then he said "no". I felt hurt but he wanted to be with me and likes to hear me talk. I think he just can't collect his thoughts.

Jean

psplife profile image
psplife in reply to Doglinton

It does break your heart and we can't take it personal because it is the darn illness and not them. Last week we were having a conversation and he said, "I really don't care", but it was that he really did not care to respond because he had no interest in that subject. Does that make sense? It was not meant to be hurtful.

I'll ask him, "What are you thinking about this very moment?" and he will think about it and say, "nothing, nothing at all." Ugghhhh!

XO

Nikkie

Katiebow profile image
Katiebow

Going through exactly the same thing, makes me feel so lonely. I spend too much time gazing out of the window thinking about how it used to be. Xx

Robbo1 profile image
Robbo1 in reply to Katiebow

Oh Katiebow, I know just what you mean. I was lying in bed this morning trying to work out when B. was in his last panto with me. I don't know how much of the man I married is left. I love him dearly, but he is now doing some very odd things, trying to get out of the car unaided, when he can hardly stand,he did this yesterday, when I was in the shop, getting undressed thinking it is bedtime when we haven't even had tea, asking," when we are going home?", when we are at home, saying I have already given him his tablets and he doesn't want more, when I haven't. What next? I just try to keep busy as I think I would cry for the rest of my life. Thank God for this site, I don't feel so alone. Sending a big hug.X

LynnO profile image
LynnO in reply to Robbo1

My husband too, asked when can we go home, when we are already there. Sometimes he only remembers the house we used to live in. Says our house now is all wrong. Things are in the wrong places. (he built both of them!) One night we were in bed and ask me if we could go home several times. I finally said no, we were staying here tonight. He then said I hope you didn't pay too much for the room, it's not very good!! In the morning, thankfully, "normal" comes back, but you never know what a new day will bring. B still talks most of the time, has trouble a lot forming words, and sometimes just sits. Not talking at all would be very lonely. Sorry you're going through this.

LynnO

psplife profile image
psplife in reply to LynnO

Gosh, everyday is so different. Hard to plan because you never know what kind of day it will be.

Hang in there LynnO.

Nikkie

abirke profile image
abirke in reply to LynnO

Yes, I too have to talk to B...instead of argue I just tell him that it's time for bed though he has been asleep for hours, or we will sleep here, though there is no other where to sleep! No since fighting it just go along until you can get him back to bed

psplife profile image
psplife in reply to Robbo1

Yes, yes, yes Robbo1. That is some of the same stuff happening here. My guy has mentioned in the last week that he feels like he is in a dream. Everything is a dream. He says it doesn't seem real. As for the strange stuff--very odd stuff happening. He would have never done some of the things he is doing now with PSP.

Hang in there.

OX

Nikkie

Robbo1 profile image
Robbo1 in reply to psplife

You too! X

psplife profile image
psplife in reply to Katiebow

Me too Katiebow! I get so mad because we had so many plans for travel and adventure and now it is just getting harder and harder. Hate it. I try and find projects around the house to keep me busy while he sleeps/rest.

Hang in there.

XOXO

Nikkie

Tokki profile image
Tokki

I am sorry to read this. The physical problems are great but if there is some communication at least we know we are doing the right thing. Bugs has gone back into the "muttling" phase - my description of mumbling and muttering combined. At least it raises a smile when I tell her. A while ago, if Bugs said she was going to give a friend a quick ring, I knew I could go out and mow the lawns front and back. Ringing someone for a chat usually meant I could go to the pictures and have a meal afterwards. Now it is hardly a couple of dozen words a day. At least you can talk with us.

Robbo1 profile image
Robbo1

Thank you for your support. Yesterday, B answered me quite clearly and I told him that he had. He said that he had worked it out in his head first. It must be so terribly hard for them......it doesn't bear thinking about. x

easterncedar profile image
easterncedar in reply to Robbo1

yes. If lonely for us on the outside, how grievous for them on the inside. It doesn't bear thinking about, except it makes me hug more and tighter!

psplife profile image
psplife in reply to easterncedar

I can't imagine the thoughts that run through their minds asking themselves, how did all of this happen. If we think it, I can only imagine what my guy thinks.

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