George is coughing and choking so much, making me feel really worried. To be honest I thought he would be better off to pass away, now we are at this stage I feel so emotional, feel like crying all the time, don’t want him to suffer, but don’t want him to leave me either. I hate PSP so much, he wants to sleep more, he is still going to the centre but not sure for how much longer this will be. Such a sad time how am I going to cope without him? Sorry feeling so sad, he is now banging the bed, oh is this another sleepless night. Yvonne xxxxx
Another sad day: George is coughing and... - PSP Association
Another sad day
Written by
Yvonneandgeorge
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74 Replies
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Big hug, Yvonne. You will cope, as you have done so far. Its a terrible time and I remember how helpless and bereft I felt.
lots of love from Jean xx
Thank you Jean, sending you a big hug, how are you? Xxx
Going through the grieving !!
I'm feeling regrets for every minute I didn't spend with him !!
I know its unrealistic but its how I feel at present. I know I was loving but its never enough.
Hugs all round I think !! xxx
STOP THE GUILT RIGHT NOW Doglington....you did the best you could do all the minutes you had with him was 10 thousand times the minutes he should have needed . You were and even still are there for him.....now it's time to let go of PSP and start taking hold of you
Love, andrea
Andrea so wise you are amazing xxxx
Ditto here Jean!
jean sending you a big hug, you have been very strong and supportive xxxx
Another big HUG from me too! It's a tough time to go through. You don't know what to wish for!
Be with him as much as you can.
Praying for both of you!
HUGS
Jen xxx
Jen it is such sad time this journey has been long and so many different changes, Skyped my brother and sister in law, today and you could see the sadness in there eyes. Thank you for the big hug much needed , sleep seems miles away. Yvonne xxxxx
Big hug from me too Yvonne. It is such a hard time and no right or wrong way to feel. Just spend time together.
Love, Vicki x
Thank you vicki. Xxxx
My heart goes out to you Yvonne. If he passes soon you will cope without him. I am, not easy but you have no other choice. Trust me and talk to me if you want to privately. Luv you and big hugs from me to you.
Audrey
Audrey thank you, hope you are ok, what are you up too xxx
You wouldn't believe it but Don told me before he passed to find another man to keep me happy. He did not want me to be alone. xoxo
Sad isn’t it that we miss out on life xxxx
Life begins anew for those of us still here
Yvonne, it doesn't have to be that way xoxo
I'm so sorry, Yvonne. No wise words, but thinking of you both and hoping you both get through this period with minimum stress and suffering.
Amanda/x
Thank you Amanda xxxxx
I understand what you are going through it’s the same here.....just heartbreaking. Thinking of you....take care...Jxx
Same to you big hug xxxx
That breaks my heart. So sorry you are going through this. It scares me thinking of what is to come. I pray that God will send you peace in the mist of such pain and that he will help your sweet husband to not be in so much pain.Lord i ask these things in Jesus precious name Amen Love You🎄🎄🎄
Thank you xxxx
Oh Yvonne I'm so sadden by post,I know I can not say anything that will make all this feel better.please don't let PSP take you both.I do hope if this is George's time that he have a peaceful journey,but as you know this dang disease has a way of dragging things out.
Hugs
Dee
Dearest Yvonne
I am so sorry you are suffering as you watch your husband. I lost my husband on Wednesday 29 November. I am s5ill trying to come to terms with my loss. Don't feel bad feeling he would be better off passing. On so many occasions I felt the same as you.
At some point I will hopefully stop crying for my loss. That may be a long way off but I have to believe it will happen.
Being strong is the only thing you can do. Believe me I had to dig deep to find a tiny amount of strength to help him relax and gently leave me. I won't say it was easy, in fact it was hard. My husband is now free of this vile disease and I know he is no longer suffering.
Try to stay strong even though you feel in the depths of despair.
Pat x
So sad😭 sending hugs and prayers for you to have the strength to get through this. And you will. ❤ xxx
Sending big hugs yvonne ,you cry it's a good release. Hope you find some strength to get through x 😙
Thank you xxxx
Yvonne,
My heart goes out to both of you. You are in my prayers. I am so grateful to all of you who are ahead of us with this damn disease. The honesty, candor, and love that you all exhibit is awe inspiring. I would be so lost and clueless without all of you. Thank you. Hang in there. You are so strong. You inspire me to be a good carer.
Warm Regards,
Dick
Dick I feel the same I would of given up years ago without all you amazing people xxxxx
Yvonne, I`m so sorry for you and George. It is such a hard time for you both, there is nothing worse than watching someone you love suffer like this.
P `speaks` with his eyes sometimes and I know he`s pleading for me to help him but I don`t know how.
Hugs to you, stay strong, you`ve done wonderfully well this far.
xx
Big hug back to you. Xxxx
Yvonne, sorry you are going through this rough time with your husband. There are so many of us that are doing the same thing as you are right now, I'm afraid. This PSP is just so awful and has a grip on so many of us, but we struggle on trying to do the best thing for our loved ones. I'm trying to be with my husband as much as possible now that he's in a nursing home and it makes me feel better that the nurses are sharing my heavy load of caring for him. He would like me there 24 hours a day, but I feel like I need my down time also and a time to clear my head. Don't feel regrets, you are doing the best for your husband and somehow we will get through the many rough spots along this lonely journey we are on. Sending prayers your way and a great big hug to you. Joyce
Thank you Joyce hate psp George is very needy he is at home hopefully will be here until the end. Big hug Yvonne xxxx
So frustrating as you want to fix it but can't. I think what all of us want for our love one who are going through this is to have quality of life, not just quantity, I know that is what I pray for.
Me too xxxx
Hugs to you Yvonne
I've been quiet recently because I have been so tearful. I do understand so well what you are saying.
Warmly
Kevin
xx
Oh Kevin how is Liz? Such a sad illness xxxx
I'm having a few non visiting days. I will be seeing her briefly this afternoon. She's not a happy bunny being in a nursing home and this seems to have become an anger directed at me. I'm hoping it will pass soon.
PSP is horrid!
xxx
I'm so sorry to hear this, Kevin. I hope it passes quickly.
love, Jean x
Oh Kevin my hear aches for you, I hope Liz settles in and you can enjoy your time with her. Sending you a big hug. Xxxx
Should of said heart x
I wish I could help in some way, give you a little tip, how to cope with this choking, even how to cope, full stop. I can't! But I do know you will be alright. Yvonne, you have been strong all the way through this and you will carry on, until the bitter end. You know that, as well as the rest of us know it. It's that little thing called CHOICE!
Use the time George is in the centre, for a jolly good howl. Perhaps it's time for a bit more counselling, just to help put things back into perspective.
Those of us, who have been where you are, know exactly how you are feeling, wanting it all to be over, yet can't bear to think of life without our loved ones. Nothing you are thinking, hasn't been thought before. I know I had some terrible things go through my mind. You are not alone Yvonne!
Sending huge hugs and much love.
Lots of love
Anne
Oh Anne thank you so much, your words mean a lot, thank you for the hugs. Xxxxx
Oh Yvonne, I feel your pain and your emotions very closely. We don't want to say goodbye and it hears. Helpless, Angry and Frustrated. But love will see us through. Charles is stable once again until the next stage aka George. But hugs and prayers dear one.
Cuttercat
Thank you George seems ok today as well, he is very tired, big hug back to you lovely lady xxxxx
Aww Yvonne simply heartbreaking
Huge hugs
Hang in there sweetheart x
Thank you Amanda hope you are ok xxxx
Yes darling I’m ok bit of a cold on the way, but I’m stocking up on meds x
Get well soon xxxx
Oh Yvonne so sorry George is having such a difficult time, it’s so bittersweet now don’t want them to suffer, but don’t want them to go either, yes this psp is so terrible just robs them of life, don’t know what to say I am there with my brother same as George. Keep strong, thinking of you many hugs. Nettie
Thank you not doing to well feeling so sad xxxx
Yvonne. Just take a deep breath and hold him and talk gently and reminisce and look or be outside. The Lord will help you thru this. Trust Him. Pray with George. It may be all he needs to calm him and help him realize what is ahead.
Many prayers God bless
Sue
Oh sue so sad xxxx
Massive hugs to you both.
I hope G will be able to continue to go to the centre for as long as is possible.
It must be so scary to see the continual choking.
Much love
Thinking of you both
Love and hugs
Tippy xxxx
Thank you, George not talking today, I woke up this morning with a pain from my ear down to my shoulder. Hopefully it will pass, so tired xxxx big hugs to you xxxxx
Yvonne, I really don't have any magic words to comfort you. You've honestly expressed the feelings so many of us have as we are going thru or have gone thru. We all are connected by the heartache of this disease.
The roller coaster ride of PSP is not fun. The terror is multiplied because we are not able to get good sleep . I too am consistanlty quilty, worried, sad and even afraid of the future. All of us feel your love and commitment to George . Your journey with PSP has been such a struggle. To see someone you love dealing with this terrible disease is awful. Sometimes I think if I would allow my self to cry, I may never stop. You and George are in my thoughts and prayers.
Karyn
Thank you xxxx
My poor darling husband has not officially been diagnosed as yet but in our hearts and souls we know that is what it is .
I swear I don't know what to do it has floored me 😢😢 no one is saying yes it is or no it's not
My husband has fought cancer, aspiration dysphagia, then psoriatic Arthritis Omg it is awful I just can't take anymore bad news I am feeling so sad that my heart is breaking ..
He has fought many fights and won because he is my hero and an amazing guy
But now I don't know what to do I genuinely am gubbed he is such a hero but now what ?
I am in real despair I am worn out ...I can't imagine what he feels !
I totally admit I am just as sad as life can be ,we are in a state of shock
Dear Maz;
It breaks my heart to read your post. You are exhausted and frightened for your beloved. People here know what you are going through and want to support you. NOTE THIS: Your post came as a reply to a string started a month ago. Because you are new (I'm guessing?) and reaching out, you should get the benefit of our whole community's response, and I wonder if not many people will see this post because it's an older string?? Would you consider starting your own post that isn't a reply to someone else, then more of us can see it, to reply?
Meanwhile, hang in there dear! When you post, let us know why you think its PSP (or CBD) - have you had a neurologist give an opinion? How long has hubby been going through this? We care and we'll chime in! Keep in touch.
anne g.
Hello Anne ,
Thank you so much for getting back to me 🙏
It is so appreciated.
I am not sure how to post it
I am not great at this .
I will give it a go now and maybe I will be lucky and you are right Anne i am new but I will persevere and get there
Thank You
Marion
Hi Maz, I agree with Anne. Write your own post, tell us your story, where you live. What's happening with your husband at the moment. We can and will help. Give advise where it's needed. Support you, listen to your rants, dry your tears. You are no longer alone, you have just found a whole new family, unfortunately, one that speaks the language, only people in our situation will understand.
My husband's journey is now over, but I would not have been able to care for him, the way I did, without the help of this site and the good folk that are on it.
Sending big hug and much love
Lots of love
Anne
Just to re-inforce what has been said.
Welcome to this site.
love, Jean xx
Yes me too welcome to the site. Yvonne xxxx
My heart goes out to you. I wish there was some way to help. Please know we are all here for you. Hugs sent to you . There is just no good answer.
Karyn
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