Giving up: Oh how I wish for a bit of an... - PSP Association

PSP Association

9,178 members11,303 posts

Giving up

Yvonneandgeorge profile image
35 Replies

Oh how I wish for a bit of an easy time, but oh no, George is so agitated tonight it is 11.20 he is banging the sides of the bed, and is so agitated feel like just walking out of here. Changed his tablets to the ones Kevin recommended, they were working really well, but tonight they are just not working, he has had a sleeping tablet, took the side of the bed down, because that is what he wanted, well just heard a bang, he has fallen out of bed, we got him back into bed, just waiting for it to start again. Got this feeling that there will not be much sleep tonight, how I hate PSP.

Been helping my daughter to pack her house up, she is moving with my granddaughters, so came home so tired, could not move my back, only for George to start.

Also one of our careers I had to ask care company not to send him anymore, he was giving George a shower which took him just over 3 minutes, no teeth brushing, we have had him come in from the beginning, I use to make him breakfast, I think they got to comfortable in the end, I feel bad about that, I feel bad that my daughter is going to have to cope with her daughters by herself, because her husband is a waste of time, I feel bad because I have not patients with George, I feel bad because of PSP it is not George's fault, but I am getting tired. I am of for a weeks break on Sunday with my sister in law, my brother is coming down. Moan over all gone quiet here, fingers crossed we get some sleep. Yvonne xxxx

Written by
Yvonneandgeorge profile image
Yvonneandgeorge
To view profiles and participate in discussions please or .
35 Replies
Babowen898 profile image
Babowen898

You poor dear. I pray George sleeps through the night, and you can get some good sleep, as well.

Auddonz profile image
Auddonz

Yvonne, You know there are good days and nights. I wish I had them back :( You are so allowed to vent anytime.

Audrey xoxo

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Auddonz

Audrey how are you? Seem to have more bad than good lately xx.

Auddonz profile image
Auddonz in reply to Yvonneandgeorge

Yvonne, I am still missing Don like crazy. He is and will always be, the love of my life. Can't believe he is gone. I don't sleep well, am very tired, probably from depression and talk to him either in my mind if someone is around or out loud if if I am alone. I am gong to try and get some counseling from the VA. Stay strong, you are allowed to get agitated but you can always vent to us, you know that. BIG HUGS FOR YOU,

Audrey xoxo

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Auddonz

Audrey send you a massive hug back, he will always be the love of your life, he is watching over you, glad you are think about getting some counselling, big hugs Yvonne xxxxx

doglington profile image
doglington in reply to Auddonz

Thinking of you. Audrey. Its tough. I'm glad you are going for counselling but I imagine it all feels so empty ? I know when I had respite I was pleased for the peace but felt lost without him.

Big hug from Jean xx

Auddonz profile image
Auddonz in reply to doglington

Jean, Haven't started yet. I don't know if t will work for me, I feel so lost without him as well. We will see. Half of me is gone.

Big hug back,

Audrey

Patriciapmr profile image
Patriciapmr

Oh dear Yvonne, I truly believe that the agitation is one of the worse things to deal with, Keith used to get like that often but like Audrey says I wish I could have him back!

Thinking of you Yvonne....

Love and hugs....Pat xx

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Patriciapmr

Thank you pat how are you doing lovely lady? Sending you a big hug xxxxx

Patriciapmr profile image
Patriciapmr in reply to Yvonneandgeorge

I'm not too bad thanks Yvonne, I've not had a very good day today, I went back to bed this afternoon and slept for two hours! I don't feel very well, I feel sick and my bones are aching, I can't stomach anything to eat so I'll be back in bed before too long!

I think when you're down everything seems so much worse!

Hope you and George are ok....

Love and big hugs....Pat xx

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Patriciapmr

Pat wishing you well, also everything is so fresh early days Pat sending you a big hug xxx

abirke profile image
abirke

Massage his body....too late tonight, I'm sure...but his muscles have not been worked and they hurt sort of....I gave B nightly massages and this helped him fall asleep....Maybe G wont be so agitated...also maybe spend a little time with him before turning of his light and having a moment to yourself.....I say this because I know that B, before he got real sick, would hold on to my arm...as if to say "don't go" so I created a routine that allowed him to wind down and I think it helped....Not to say that he didn't fall out of bed....and that was with a medal barrier...just that it helped a bit.......OOH a warm wash cloth on face and shoulders.....

I am sorry about your daughter. I was the daughter of divorced parents. Very hard life.....But like everything it is what you make it, and hopefully your daughter and grandchildren can make it a good and meaningful life....

PSP is stingy! It wants it all and it wants us to pay the price....our poor loved ones pay with their body.....we pay with our minds and emotions....(and body as I am going through weeks of Physical therapy getting my shoulder back in working order)....But hopefully our soul is still in tact ! Yvonne I give to you a big virtual hug.....You are working both ends of the stick what with your husband and your daughter needing so much of you......I do hope you get the carer thing situated It wasn't until this February we used any form of carer and I loved it though I did not have time to complain ....

Please sleep well....I just took some otc sleeping stuff ....keep waking at 2 am......

(((HUGS)))

AVB

Yvonneandgeorge profile image
Yvonneandgeorge in reply to abirke

Thank you for your kind words, how are you doing? Yes will try that, feeling tired, be better after my break. I am sure my daughter and granddaughters will be fine, they are getting there, they are staying with me for a few weeks, until there new house goes through. Sending you back a massive hug. Yvonne xxx.

jillannf6 profile image
jillannf6 in reply to abirke

I agree andrea

the massaging will help !!

LOL JILL

ZXXXX

abirke profile image
abirke in reply to jillannf6

Thanks J6, good to have your input...How you feeling girl?

AVB

vlh4444 profile image
vlh4444

I hope you had an OK night in the end Yvonne and that you feel better today.

Vicki x

Yvonneandgeorge profile image
Yvonneandgeorge in reply to vlh4444

By the time I went to sleep at 2.30 he was banging again at 6.30 so not much sleep again, have to help my daughter again today, George at centre. Xxxxx

vlh4444 profile image
vlh4444 in reply to Yvonneandgeorge

Take some time out for yourself while George is at the centre. You need to rest as well as helping your daughter!

V x

Yvonneandgeorge profile image
Yvonneandgeorge in reply to vlh4444

Going to looking forward to them coming xxxx

Suebatt profile image
Suebatt

Morning Yvonne

Hope tonight you will get a peaceful nights sleep .ive had nights were I've sat up till about 4am .i so feel for you

Hope thinks go ok for your daughter and go and enjoy your week away .

I've sent you my chimney to open the lid and let that steam out

Sue x

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Suebatt

Will do thank you xxxx

Satt2015 profile image
Satt2015

Bless you Yvonne! This Psp literally takes over our lives and not in a good way! Poor George he must be screaming inside?! Psp is simply hateful!! I hope today is a better day for you both and that you did manage some sleep?! Don't feel bad about that carer, some, unfortunately will take the piss if given an inch! And I'm sure your daughter will be ok, after all, she's got you for her mum!! Hugs x

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Satt2015

Thank you lovely lady xxxx

Heady profile image
Heady

Hi Yvonne, I think the bottom line is, you just feel bad! Over tired! over stressed! over worked!

Glad to hear that you are having a break on Sunday. You need it. Go away and forget the world and all it problems. They will all still be there when you get back, so you won't miss anything!

I know it's hard, but you have to let go a lot of things, to be able to look after George. It will be great having your daughter staying with you for a few weeks, but, please, please make sure that it does NOT increase your workload.

Sending huge big hug and much love.

Lots of love

Anne

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Heady

Thank you Anne will have a good rest, hugs back to you. Will make everyone ill there weight. Xxxxx

doglington profile image
doglington

It sounds so hard, Yvonne. Can you have someone overnight so you can sleep ?

I'm lucky so far as Chris doesn't get agitated.

It sounds to me as if you have always been someone who is there for everyone else ? You really need to be kinder to yourself, Yvonne. Think about it when you are on your break. And have fun !!

love, Jean xx

Yvonneandgeorge profile image
Yvonneandgeorge in reply to doglington

Jean just what I am like , yes I know going to promise myself that everyone helps out. Yvonne xxxxx

daddyt profile image
daddyt

It sounds like you're beat and just warn down. Get whatever rest you can... you can't change today, but you can pray for a better tomorrow. xx

Yvonneandgeorge profile image
Yvonneandgeorge in reply to daddyt

Thank you x

Katiebow profile image
Katiebow

Fingers crossed for you Yvonne that you get a goods nights sleep, sounds like you need one. Ben hasnt had the agitation thing as yet, he is so passive I can't believe it's him but I am well aware that all could change in the blink of an eye. When you have to deal with agitation it is no wonder you need a weeks respite to recharge the old batteries, it is no wonder you feel like running away from all the this crappy disease throws at you. Enjoy your week off duty.

Sending you a big hug

Love Kate xxxx

Yvonneandgeorge profile image
Yvonneandgeorge

Thank you Kate xxxx

Cuttercat profile image
Cuttercat

Dearest Yvonne,

I'm right there with you. Charles is in a very bad way. He can't take it anymore and I can't take it for him. It is the worst disease in the world and I hate every minute of it.

He can't swallow.

Cuttercat

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Cuttercat

Oh dear don't you just hate PSP, it takes so much away, George has been to the centre today, came home tired, fingers crossed he sleeps tonight xxxx

doglington profile image
doglington in reply to Cuttercat

Big hug for you, Cuttercat. Wish I could help more. This disease brings so much helplessness.

lots of love, Jean x

Baytalon profile image
Baytalon

I send my love and prayers to all of you who are further down this path then I am. I am frightened of what is to come, but I try to just be grateful for the time we have now.

You may also like...

My Ex is giving up

brought up episodes from our time together and we both just stared at each other ….. knowing there...

Giving up is NOT an option! Trial without Catheter vs Supra-pubic

hour. So I prayed and just lifted it up to HIM and made a final push and took my B for a 30minute...

Tears have all dried up

to get him o to the toilet he was there until 03.25 nothing again, managed to get him back to bed,...

Getting up from a fall

the bathroom & it took an age to get him off the floor & back in bed! I am feeling shattered now so...

Up date on George

7.30, felt so tired in the morning, laying I. Bed know not tired, listening to George coughing,...