PSP Association
5,710 members7,804 posts

Anyone else fed up with giving instructions ?

Wow I have never know such a tiring/trying desease every day I have to tell my husband how to move “take the step” “bottom in “ “don’t lean forward “ “slow down “ “don’t ram the furniture “ “not too fast” and that’s just from the bed to the chair !!! Help any easier way I’ve been doing this for years now

61 Replies
oldestnewest

I am smiling. Yes I do it all the time with mum and then we laugh when I say

Am I being bossy ? I feel like her mother sometimes . Think we all do it Dance without meaning to .

Lynda x

1 like
Reply

Thanks dollydott i think I could handle it better if it was a parent maybe

My husband is just 70 and I am 63 sometimes I just want him to come back to me I miss him so much it’s like they’re not really there anymore isn’t it xx

5 likes
Reply

Yeah I suppose it is a different kind of relationship.

Others with spouses with cbd / psp will get back to you I am sure. It will be interesting to hear what they say.

It is a very distressing condition and takes away so much from our loved ones .

Lynda x

Reply

Thanks Lynda sounds like you are a very good carer very patient x

1 like
Reply

thankyou dollydot xx

Reply

Oh yes dollydot. I'm 71 and Rob is 77. He's in care as I could no longer cope physically with his falls and the broken sleep but I visit twice daily and spend many hours with him. I so miss the Rob that was. From time to time though, there are glimpses of the old Rob. A clearly enunciated insightful comment or a lovely smile. I just melt and feel so much love for him, but at the same time, such sadness for what has been lost. Cruel, cruel disease!

1 like
Reply

Your words are so true sums it all up really god bless you xx

Reply

Oh, Lord YES!!! At some point in the last few weeks I don’t remember what we were doing but he said to me “What do I do now?” My thought was use your brain.

2 likes
Reply

.. And if it was my hubby, Jeff, he would have thought "I wish my brain WOULD let me use it! Lol..or cry ol.....

Xx. Anne G.

1 like
Reply

Thankyou we just plod On don’t we x

1 like
Reply

Thankyou Jeff it’s all of us isn’t it 😊

Reply

Love it. Made me laugh. Thank you. I think I say all those things in my sleep. Mine also includes 'put the spoon in your mouth' when it gets suspended in mid air halfway from the plate !! Love AliBee

2 likes
Reply

Three weeks ago I started to feed him dinner. For a year he managed to eat half of it then leave the rest out of frustration. Breakfast and lunch are things he can pick up to eat. Getting the fork to his mouth with food on it had become to difficult for him. Now he is getting a full meal and dessert in him.

3 likes
Reply

Hi Jeff it’s amazing what we have to learn to do isn’t it Thankyou for your reply stay strong 🤗

Reply

Each new thing added to the care list is another step on the downward trajectory. Yet he is still very healthy. Thirty years ago he told me he feared being disabled and losing his mind when he got old. He’s doing both now.

2 likes
Reply

He’s lucky to have you jeff

1 like
Reply

Don’t I know it. People have said to me if I was the one who was sick he would do it for me. I burst out laughing and tell them no he wouldn’t. Physically he is unable to do so. He’s had a bad back since birth. The temperament is another thing he doesn’t have.

Reply

Well done you’re amazing I’m glad I made you laugh as sometimes it’s hard to laugh isn’t it xx

2 likes
Reply

Sounds like the conversation that take place in our house...Brenda xxx.

2 likes
Reply

Thanks Brenda I know I’m not alone now 🤨xx

1 like
Reply

Oh I do recognise this in

Addition I must say 50x per day “wait’ or ‘slow down ‘. Open your eyes!!! So good not to be alone in this crazy world of PSP!!!

Love Tippy

5 likes
Reply

exactly the same for me too with my mother...it is exhausting but I can only imagine how she feels everyday and night

Reply

I seem to do this, my husband has CBD the best one for me is stop blinking always if we go out blink blink blink

1 like
Reply

Wow that must be hard you are a good Person kaka 1234

Reply

Hi kaka - Does your hubby have light sensitivity now? My cbd hubby developed extreme light sensitivity, and had to wear a second set of sunglasses on top of his clip on one's....!

Reply

My stock phrase at the moment is.....Do you want me to help?

Of course, my darling doesn't want me to help! But he very often needs it. 🤐

And so we press on.

Juliet x

3 likes
Reply

Yes I know they don’t want it but they need it you are a very patient person if I ask that the answer will be so slow I could’ve done it ! 🤗

2 likes
Reply

Oh, yes, the stubborn independence.

1 like
Reply

We constantly have to do this for my mum too!

My mum is just 58 and I know my dad also struggles with it being his wife fading away!

It’s a cruel and unfair disease!

I wish you and your husband well x

1 like
Reply

Ah that’s very sad stay strong Ellie34 you are doin an amazing job for your mum xx

Reply

Thank you so much :) It’s heartbreaking as well as frustrating isn’t it. Your husband is very lucky to have you take care of him also ❤️xx

Reply

Thankyou 💕💕

1 like
Reply

Oh this is so familiar. I tend to walk backwards steering the walker and continually say, left, left, left, right left, or tap his left leg as Chris seems to forget he has a left leg and hand. I sound like a sargent major! This is such a cruel condition but I know he's still in there somewhere.

Keep on keeping on x

2 likes
Reply

Yes AnneandChris I’m sure he is it’s a shame we can’t all get together but this site is good for airing and sharing 💃

1 like
Reply

One tip NannaB taught me years ago, always use positive words, if you don’t want him to move, always say, “be still” instead of “don’t move”. Etc etc. Get him to tell you what he must and must not do, for some reason that always seemed to help with Steve.

Sorry, but being a bossy boots is part of life with PSP, this is one trait I haven’t lost and I don’t intend too!!!!

Lots of love

Anne

5 likes
Reply

Thanks Anne I will try that I say don’t too much

Hopefully he will like me better 👏😉👍xx

1 like
Reply

A big thank you for passing on this tip Anne. I'll strive to put it into practice. The mindset then, is being helpful and caring, rather than critical. Perhaps a subtle difference, but hopefully a very important one which could make a big difference.

1 like
Reply

Sadly, my husband was hit very badly with cognitive function early in the disease making instruction almost impossible so trying to find new ways of getting him to understand was draining. He is on end of life care now and oh how I would give anything for him to be back with just any kind of function. The reality is I must now let him go but what I am saying is treasure him now even with the constant instruction because in the end PSP has the last word. Hils.x

1 like
Reply

This is so familiar, the one that gets me with my Mum is getting up from a chair she always tries to pull herself up with the walker rather than push from the chair, everyday it's the same "No no no push yourself up" - I must try and follow Nanna B's advice & find a positive way to get the message through.

I don't know how all you 24/7 carers cope, I spend every afternoon with Mum and find myself getting frustrated, so not to get any break must be so very hard. I try to inject a little humour into proceedings (if I can get a smile out of her, however fleetingly, I feel I've made a positive difference). As we approach her chair with the walker and have to reverse back to it I usually ask her "to give us a twirl Anthea" (you have to be British & of a certain age to remember Bruce on the Generation Game and his glamorous wife, Anthea) or "turn around Whittington" (sorry another British reference to Dick Whittington, with Bow Bells telling him he would be Lord Mayor of London). These little phrases just help to lighten the atmosphere a little of what has been a tremendous effort for Mum to get to the loo and back.

Alison xxx

2 likes
Reply

Lovely Alison Thankyou I must try and follow nana b s advice too your mum is a lucky lady to have you and thanks for sharing sometimes it feels like I’m the only one till I get ion this site xx

Reply

With my mum, it is similar when transferring from the wheelchair to the toilet or the bed. ‘Put your feet under you and wide apart’ (as every time her feet are close together and in front and she is really unbalanced when getting up). ‘Push off from the chair with your hands’ as she tries to pull herself up with anything around her, like a door handle. She asks ‘What do I do?’ All this, many many times a day. I can’t believe she has to be told every single time. But I’m relieved to hear it must be a PSP thing. I’m afraid I get so so angry. I am normally a very very patient person but I feel I have a really short fuse when looking after mum 24/7 and I feel so very guilty all the time for being impatient.

Reply

Hi City beach Thankyou for your honesty I get so angry too when I know my husband doesn’t have dimensia why can’t he remember what to do ? It’s so hard I hope you get some respite I get some I’m lucky he goes to a social centre phew it’s good for me 💞

1 like
Reply

I too can relate to this and it’s hard work sometimes as you feel you are constantly nagging but I know if I don’t he will fall to the side or backwards or trip over his feet. It is so difficult sometimes so I am totally with you on this one.

1 like
Reply

Thanks for agreeing one day someone will come up with a solution hope it’s soon lol 🤨

1 like
Reply

Yes. I remember those days. I used to sing a lot to keep him moving.

After he died I found it strange to not do a running commentary.

I know how exhausting it is.

Love Jean xx

1 like
Reply

Thank you Jean I shouldn’t complain should I sorry I wish none of us had to deal with this it’s so horrid isn’t it

Love Irene

Reply

I complained at the time !!

There's nothing good about PSP.

Complain and then tell him you love him and only hate PSP.

Xx

Reply

Thank you for your honesty hope you have some good memories too 💕💕💕

Reply

Oh, yes !!!

X

Reply

I bet you do 💕💕💕

Reply

You sound just like my mum! She would give my dad step by step instruction on how to get up from his chair to the kitchen table. Her main gripe at him would be for putting his zimma too far forward. Most of the time he would look at her like a defiant todler and do his own thing😄 and she would tell him off for being like his grandson.

Reply

You sound like you have a lovely family xx

Reply

Yep just the same except that I have to give orders in french.I occasionally try in english as he used to speak some english but he doesn't always understand now. The hardest is in the morning trying to get him to sit on the edge of the bed for breakfast, I keep telling him he could sit in a shop window as he is like a dress dummy. I have to pull him one way and push his feet with mine to get him in a sitting position, and have to tell him to hold on to the edge of the mattress 'cos if I let go of his hand to sort his legs out he keels over sideways, rather frustrating for me but it makes him laugh at least !

1 like
Reply

Oh dear that sounds a bit like us too but without the French 🤗

1 like
Reply

Hi Patch33 I have to do exactly the same with W when getting him from lying down in bed up to a sitting position on the edge. I try to keep him upright with one hand while trying to sort out the legs with the other and tell him to push up on the bed. But there are lots of times when it goes pearshape and he flops sideways. Most times we both end up on the bed laughing, but if I haven't had a great night's sleep its a different story. 😡😡

2 likes
Reply

I was having a bad second day, and then I read your post. I found myself smiling. I'm sorry to say that I understand your frustrations, but the sad fact is that I don't have any suggestions.

Andy

2 likes
Reply

Glad it made you smile Andy that’s all we can do really I do get some respite I hope you do too 😊 it helps to have a break

Reply

Hi Dance, I feel your frustration, it's the same in our house too. I say exactly the same to W over and over again every time he walks, sits down or goes to stand up. I also have to remind him not to take a drink when he has food in his mouth as this leads to choking, (his swallow has slowed down.) You would think one reminder during a meal would suffice but no it doesn't, and then I think I'm not letting him enjoy his meal. This caring business isn't easy. I hate PSP. Best wishes Nanny857 xx

Reply

Love you nanny 857 I have the same when he puts food in his mouth and drink makes it hard to go out to eat doesn’t it 💕💕💕

Reply

It's hard to picture so many of us are all doing the same, My husband goes into a freeze when trying to try to transfer to chair or bed you give him a moment then say again and again move the left foot forward, this morning he retorted and said "don't tell me tell my brain", now feeling awful, knowing he struggled to say that because he can't hold a conversation, just the odd words, (sometimes he surprises us with a joke word contagion), so holding back the tears I give him a cuddle.

Like you dance, I wish we could find a way without talking to them like children, I would love to be a wife again and you know they feel the same, especially when you're eating out and you have to cut up their food, which you took from your plate because they don't eat enough to order them a meal, a wife I'll never be again because PSP stole him from me.

But, we will continue because we love them so much, and I pray he goes with natural causes before PSP does it's nasty work.

just hang in there Dance, in a way it's nice to know we're not alone. God bless us all xx

1 like
Reply

Thankyou serverna 03 you say it like it is our role changed from wife to carer it’s not what we want is it hate this mongrol disease I am the same as you hope he goes from natural causes before the more nasty stuff apears 💞💞👍

Reply

You may also like...