Sulking

Larry is now sulking. We had words again this morning. (Had a flare up on Monday.) There was a story on the news I missed the jist. Asked him what it was. He told me but I couldn’t understand his speech. Asked again and still couldn’t get it. He got annoyed with me. Told him he wasn’t enunciating he was making sounds. That hurt his feeling. I know this is hard for him to deal with. It’s hard for me to deal with.

[Heady]

Hi, it is hard, isn't it. You are not alone in the struggle to understand your loved one. I think it is the cruelest part of PSP, for both parties.

Please don't feel guilty for "having words". It's what we all do, it's part and parcel of life. In other words, a normal every day occurrence. Treasure everyone you can participate in together. There aren't many left.

I got Steve a magnetic board, which you could write on, or use big bright letters. At first I would write big capital letters across the top, so he could copy and try to make himself understood. Then he used the letters. Eventually, he would just point to a particular letter and I would write the sentence. It did help, although mostly, he used them to tell me to stop doing something, which obviously he then got the sharp edge of my tongue. There are no winners where PSP is concerned.

Sending big hug and much love

Lots of love

Anne

[Hidden in reply to Heady]

Thanks Anne. The frustration for both of us spills over at times. He’s still in good shape considering where this ultimately goes.

[daffodil48]

It is very frustrating. My husband isn't really bad yet but sometimes I just don't understand him and when I ask him to repeat himself he shouts it and glares at me. I tell him no need to shout just try to form words better instead of slurring them. He can talk clearer if he tries.

[Hidden in reply to daffodil48]

Larry can be very clear if he wants to make the effort. He’s told my it’s tiring to do so. I understand that. It’s tiring to ask repeatly what he is saying. I repeat everything I understand and ask him to fill in the words I don’t get.

[Kevin_1 in reply to Hidden]

Hi Jeff

I am sure you are correct regarding Larry.

Having said that it took Liz a lot of effort to speak clearly later on and as the day went by she jut didn't have the strength to do it.

Just a heads up on what might come.

[Hidden in reply to Kevin_1]

I do understand that it is getting harder for him to project and enunciate. I am glad he is still making the effort. There isn’t anyway I can pretend I understand sometimes and that’s when we both get frustrated.

[Kevin_1 in reply to Hidden]

Yes, it's very frustrating.

The thing I found hard about being a PSP carer was increasingly having everything I did interrupted and having to care at a very slow PSP pace.

Partly my fault for being too available, but I couldn't bear to leave her wanting something and not being there for her. My fault really.

[Hidden in reply to Kevin_1]

I have had to tell him I’m not as young as I use to be and not moving as fast.

[raincitygirl in reply to daffodil48]

When hubby gets stressed he has an involuntary habit of shouting the word (e.g. No!) louder and louder! After, he says he doesn't know why that happened. ..at least it gives him some practice with "volume" (!)

Anne G.

[Hidden in reply to raincitygirl]

As Larry get more frustrated and angry he gets louder and clearer. It’s a trade off.

[Kevin_1]

Hi Jeff... been there and done it!

PSP brings so many humiliations for the person with it and it's next to impossible not to raise them unless one resorts to dishonesty... It's a tough one and frustrating for both.

Best to you both

You are not alone on this one

Kevin

[Hidden in reply to Kevin_1]

You were especially in my mind having read the posts about Liz. Our tiff helped clear the air some.

[raincitygirl]

I find the struggles both of us have over communication are some of the greatest and most heart breaking aspects of the disease.

My heart goes out to you. XX

Anne

[Hidden in reply to raincitygirl]

You know what it is like. At least I have this site to talk about it. He doesn’t have anything.

[Yvonneandgeorge]

Jess I know the feeling xxxxx

[Yvonneandgeorge]

It’s should of said Jeff I know the feeling xxxx

[Kenfa]

Hi, it is very frustrating at times for both the speaker and listener. My father is very hard to understand these days. We gave him an ABC chart to point to when its too hard to get it out. It works well but he seems to just want to point instead of making the effort, which is not good.

[Hidden in reply to Kenfa]

We haven’t gotten to pointing yet. He can still get his thoughts out. It’s a slow frustrating process for both of us sometimes. I do try to put myself in his head to understand his frustration.

[LuisRodicioRodicio]

Hi Jeff166!!

The enormous difficulty in communication. The immediacy asking the patient to execute their wishes. The tiredness of the patient that affects their appetite, especially at lunch and dinner.

All this is exasperating and sometimes ... some spark comes up.

It is described. It is normal. You have to avoid it ... for example, by leaving the room or the house where you can not hear,... before it explodes and you fail.

I think it's appropriate to remember Anne Heady's phrase (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

Resilience and courage There is no other.

Luis

[Hidden in reply to LuisRodicioRodicio]

I am a very patient person most of the times. Sometimes th fatigue gets the better of me.

[DenB]

It is the fatigue, on both sides isn't it? My husband tries to say something and I ask him if he could say it again, eventhough I know he won't be able to. It's just that I don't want him to think that I am not taking any notice of him!

I find myself asking him the same question over and over but it is just too much to ask of him. Sometimes he can just make a sort of gesture, a move of his eyebrow or a blink and I know exactly what that means! I can only imagine the frustration and horror, for my husband,of not being able to let me know what he wants, feels, needs, or what he wants to tell me or ask me. He may sometimes show his annoyance at me not knowing any of this but I will never get annoyed with him and that's just how it should be.

Thinking of you all in the same situation.

D x

[Hidden in reply to DenB]

I’m learning to read his gestures and body language that have to do with needing the bathroom. He will start to move and I ask him what he’s doing. Then he may say what it is. I offer guesses.

[DeDeDickson]

Oh how your post rings true for me. How often I lose my patience when he repeats what he just said at the same volume. Yet when he wants to get on me for turning the air conditioning down (too hot in this house!), he can be sure I can hear him from the other room!

[Hidden in reply to DeDeDickson]

I really need to get to my exercise for an endorphin fix. I may get to it today.

[doglington]

I know the feeling. Chris sometimes sulked too. I tried to remember that I was the only one he could be sharp or unreasonable with. I don't know if it helps to recognise its because you are special !! Its love.

[Hidden in reply to doglington]

No one gets treated the way family gets treated.

[racinlady]

I wish I had some wisdom to add on this subject, but I don't. I can surely echo the frustration though. I think I've more or less given up on communicating with my husband anymore. I think it's making me crazy!

On a good day, my husband may get 2 or 3 mostly unintelligible words out, but peters out before he completes the thought. I spend a few minutes then trying to guess what he was going to say, but I get no response. Sometimes he can say no, but it often isn't consistent with what his body language is saying. I'm just starting to think that NO has become his favorite word. Is it just the easiest thing for him to say? Or, kind of like a two year old, his favorite word? I think I've tried most everything including a communication board, hand squeezing and blinking. He can't see well enough to use the board, nor can he point, he doesn't have that much control over his hands to squeeze and doesn't seem able to blink. I say I'VE tried because I don't see him really trying. I know it doesn't do a bit of good to get angry.

My husband never was that much of a talker when he was well. Sometimes I used to ask him why he didn't answer me when I said something and he would say he didn't have anything to say. Maybe I shouldn't expect him to communicate now.

Thanks for the opportunity to vent. I really needed this!

[DeDeDickson in reply to racinlady]

I understand that too!

[racinlady in reply to DeDeDickson]

Dorie,

Thanks for getting it!

Pat

[Hidden in reply to racinlady]

One of the things that works for us was not having to talk all the time. We will sit for hours next to each other reading or watching TV without making a comment. I’m making more of a point of telling him what I’m doing to include him. That’s isn’t my normal behavior.

[racinlady in reply to Hidden]

Jeff,

It sounds like you're doing the best you can, which is all any of us can do.

Pat

[Hidden in reply to racinlady]

So true. There’s no how to do it book for this. I’ve cobbled things together from reading on here and the therapists we’ve dealt with. The doctors have been fairly useless.

[doglington in reply to racinlady]

We often forget to factor in what he was like previously. Hopefully he just doesn't need to say much so will be less frustrated.

I remember how it often felt so lonely though.

xxx

[racinlady in reply to doglington]

Doglington,

You are so right about it being lonely. I've finally started just taking my Kindle and sitting and reading for a couple of hours before heading back home an hour away. I don't know what else to do.

Pat

[Hidden in reply to doglington]

If I didn’t have this site I don’t know where I would be. This place is a life line.

[doglington in reply to Hidden]

For me too - and so many others. Thats why we still come on here after it is over, because the effect still goes on. It is a large family.

xxx

[DenB in reply to racinlady]

That sounds exactly like my husband! X

[Megabrew88]

Oh Jeff,

I know exactly where you’re coming from,

We’ve been there when T was still talking. It felt like the onus is on us carers to understand them 😩 and much as we want them to enunciate it’s quite a struggle for them.

I used to think he wasn’t trying hard enough and giving up too easily, and I used to badger/nag him to do his speech exercises and it was exhausting and would always end up with both of us in tears!

My B recently stopped talking altogether and my desperate attempt to get some help from his speech therapist resulted in being told to just let go and accept that this is now the “new normal” as it is causing more stress and takes a lot of precious energy from him. It’s sad BUT true!

So we have now learnt to communicate with signals, thumbs up or down or finger pointing and occasional writing etc,, and we have less strife and stress.

Don’t feel guilty if you sometimes need to vent out, we all need to let off steam so as not to explode!

Best,

Mx

[Hidden in reply to Megabrew88]

Thanks. It was venting. I have to remember he is slowly declining. I know he is trying and it is exhausting for him to do so.