Feeling useless

Sitting here in peace and quiet George still asleep dog snoring sun beginning to shine and feeling useless and bad George sleeps until late does not want to interact with any one at the moment just sits there with his hands together, it is such a sad time, I have not been able to have a good cry and shout about it, so much going on at the moment and my daughter is trying to help with the problem, which is nothing to do with George, but she has her family and job to think about, so feeling stressed about all that.

Mother's Day on Sunday so will be all together for that, and my birthday coming up and our wedding anniversary but just can't get myself motivated for anything, things keep going around in my head, wish I could just have a good cry.

Sorry to be so miserable but can't seem to shake myself out of it and it is not me being sick, keeping think how long George has had this horrible PSP, keeping thinking back to when he was so aggressive, which was over 5 years ago, one good thing is that he is not like this anymore, but it is so hard to make all the decision now, which George and myself did together.

Sorry everyone you have all got enough to cope without me moaning, which I seem to do a lot of lately, just trying to get the right medical help is so hard, luck the doctor is good went to order some medication yesterday saw our doctor she took the time to talk to my daughter and myself and looked at getting liquid form of some of the medication, so we are lucky to of found a good doctor and she is going to chase exercise classes, an we have not heard from them even though they said we would in a couple of weeks, which is now over 3 well enough of my moaning all have a good week Yvonne xxxxxxx

8 Replies

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  • Dear Yvonne,

    We have all been where you are and it is hell, isn't it? George may seem transfixed and without communication but I think he will sense how upset and depressed you are, and that will make him feel even more frustrated and dejcted. My advice from directly similar experience, is to touch him and hold him - if possible for minutes at a time - gently talking to him about the things of the day, plus Mothers' Day, your birthday and wedding anniversary etc. So that he doesn't feel that you are dying to rush off and do something else that has to be done! H e may not react except perhaps with an attempt at tears, but he will hear you and I hope be comforted and reassured - and you will feel better.

    With my best wishes and love,

    Christopher

  • Don't worry - you have a good moan - why not . And why not a good cry too ? We all have days when we feel just like you and it is an effort to get going and keep going . And its hard making all the decisions about absolutely everything , big or small .I worry about my daughter too -of course we do we are parents but they are old enough to make their own decisions so you have to learn to accept their input - not always easy as you want to protect them but any help offered gratefully receive .If you stay really down too long see your doctor for yourself and tell her how hard you are finding it and maybe she can offer you some support . Not everyone is keen on antidepressants but sometimes they can help especially when you are under such pressure . Anyway -thinking go you .Georgepa

  • Hi Yvonne, I can relate to all your are saying and feeling, it is such a hard road. My husband has PSP for about 7 years. I too make all the decisions, and most of the times feel so lonely. I think we are all crying inside all the time. Try and take care of yourself. xxx

  • Yvonne...there are no concrete answers we are on approx. year 11 of this vcoyage,the only thing Madeline has left is hearing...my thoughts are with you re your feelings,unfortunately the person who could share totally with you is no longer that much required support,I wish I had the answer,take care of yourself as much as possible,maybe our reward will show up in another life...love to you Rollie

  • Dear Yvonne. Take some small comfort in knowing that all of us on here understand, so you have a good old moan, cry and get it off your chest a bit if that helps you in any way lovely. No one said it was going to be easy did they, but we sure didn't realise it would be this hard either. Best wishes to you. Hope the day improves and you start to feel a little better, there's always tomorrow and the sun is shining. God bless xxx

  • I'm so sorry Yvonne, I'm feeling just that same way right now, we try to be so strong for everyone but it's so so hard. I've just found out that our request for a referral from our new GP to see a new neurologist was never done!! We have to wait even longer and he is so poorly some days. Also the referral for hubby's wheelchair, not done, just feel so deflated and let down. Keep going and it's ok to cry, impossible not to, xx

  • Thank you all for your kind comments just feeling sorry for myself I know we are all in the same position just thank you all love to you all have a lovely day, not sure how much longer it will last, sorry to hear your referral was not done, hopefully you will get your wheelchair soon, we had pyso come in today she they are very good, but George will not do it with me, oh well never mind, also waiting for our referral to come through, will ring again today, happy Wednesday to you all xxxxxx.

  • Yvonne, don't feel bad,today i'm feeling much better about myself, I CONTACTED A DR.THAT CLAIMS HE COPES W /THE FAMILIES & CG'S OF THE PATIENT, TO MAKE THEM UNDERSTAND THAT THERE IS NO CURE FOR PSP.I GOT THIS REFERRAL BY THE PERSON THAT I GOT FROM THE PSP NEWSLETTER MAILED TO ME. HOPE I HELPED YOU GENA

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