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
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Yvonneandgeorge
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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 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
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.
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!
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!
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......
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.
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
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
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.
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 !!
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.
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.
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.
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You are so allowed to vent anytime.
