Feeling so sad

Well George's coughing has got worse, takes ages to eat, he is choking all the time after coughing, my heart is breaking, I look at him and it breaks my heart, when he smiles it's like the old George is back again. Struggling to understand him lately. Such a cruel illness.

I asked him at dinner if he wanted to have a peg fitted he said NO. Going to take him away next week, with the help of a career and my son and his partner, we are going to Norfolk, pray for us please.

I hate PSP xxxx Yvonne xxxxx

84 Replies

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  • Yvonne, My heart breaks for you, stay strong for yourself and for George.

    xoxo

    AUDREY

  • Hi Yvonne

    My heart goes out to both of you it is a cruel illness and needs to go away from everyone if only it would

    You go away and both enjoy your time and you try to relax with you having somebody with you

    Thinking of you

    Higgs

    Sue x

  • Thank you sue , I hate PSP xxxx looking forward to going xxxx

  • Brilliant and as I say Yvonne enjoy

    Sue x

  • Dear Yvonne,

    I don't tend to follow many posts these days as it really upsets me, but I do worry about the dear friends I have made on this site which includes you, I'm thinking of you both, I agree it is such a cruel illness....

    Sending you love and hugs....Pat xx

  • Thank you pat, how are you doing? Xxxx

  • Not great Yvonne, I miss Keith before PSP so much....xx

  • I know it must be hard for you xxxxx

  • I'm at this stage as well Pat. Taken me ages to move past PSP. Now I only think of him as the fit and bouncy person he really was. It's a lot more painful, as before, I had comfort of knowing, I couldn't wish another second of that evil disease on him. Now I just want my husband back.

    Sending big hug and much love.

    Lots of love

    Anne

  • Its like grieving two losses, isn't it ?

    The immediate loss and then the original loss when he first changed.

    You're facing it bravely, Anne. Much love from Jean xx

  • I know exactly what you are saying.I felt that same way before my husband passed on July 12.Now I miss him WITH PSP.Such a cruel disease to play so roughly with our emotions, Love and blessings to you!

  • Thank you big hugs to you xxxx

  • The old friends need us all . The new ones each other.

  • So true xxxx

  • Will think of you and hope this time away together is as enjoyable as can be. Jx

  • Thank you x

  • We are going through the same thing right now. I understand, it does break your heart. Hang in there. You are doing the right thing. So many people don't understand.

  • Jean you are so right, people don't realise what it is like watching your husband cough then choke, passing out, it is really difficult, I go to bed and think what is tomorrow going to bring, do I to the bedroom in the morning, to see if he is still breathing, it is a horrible feeling xxxx

  • That is exactly me each morning .... do I go and see if hubby is still breathing ..... do I go and shower ready to face the day. Seeing the person you love and care for deteriorate is heartbreaking. PSP is cruel to the sufferer and we carers can only watch ..... I feel absolutely helpless. Hubby's birthday today .... how can you wish happy birthday ..... nothing happy about it .... sorry to go on. Jx

  • Feel for you both Yvonne, Ben is choking a lot now, voice virtually gone and I have terrible trouble trying to interpret what he is trying to tell me, most of the time he is silent. I don't think I could take him away now as his posture is so bad that any length in his wheelchair in the back of the WAV is too much for him. I hope that you manage to have a lovely time in Norfolk it's easier when you have several pairs of hands and someone to talk to. Take good care of yourself.

    Love Kate xxx

  • Thank you Kate xxxx

  • If your husband is interested, I am happy to send you the swallowing exercises my husband has been doing. He says they have helped. The objective is to strengthen all the muscles involved in swallowing -- tongue, cheeks, jaw. He also started wearing a neck brace to keep his head in a better position. He thinks that also helps. Hugs, Christine

  • That would be great thank you xxx

  • Hi Christine, Just read this post. Could you pass on the info regarding swallowing exercises? Did you get them from a physical therapist? Or occupational therapist? It sounds like starting them sooner would be better than waiting. Thanks. Kathy

    I so appreciate this website and all of you who are posting. Being able to learn from your experience instead of stumbling along in the dark is so helpful. My heart goes out to you, this disease is unbelievably difficult to deal with and Kurt is just beginning to have problems with coughing.

  • Thinking of you as well. Thank you. Yvonne xxx

  • Darling Yvonne, I totally understand your frustration, your sadness, your worries! This choking stage that George experiences frightens the life outta me because how do you cope? What do you do? All so utterly unfair!!

    I think Norfolk will be good for all of you and I'm pleased you'll have help!

    Thinking of you and sending lots of love x

  • Thank you beautiful lady fingers crossed xxxx

  • Sending you big hugs. It is a scary job being the main carer and not knowing what is going to happen next and having to watch the deteriorating nature of the beast illness.

    I hope Norfolk is a good break for you all xxx

  • Thank you everything crossed xxxx

  • my darling how do you feel about the PEG tube...if that is no...then call hospice about thickened oral food that he can swallow with minimal choking....B did the PEG ...need I say more.....this happens to our PSP darlings....now what to do.....

    ((HUGS))

    AVB

  • I asked him yesterday about to peg and his answer was NO xxxx how are you beautiful lady? Xx.

  • I so understand...I have Georges same stance....If ever / whenever I come to that I will say no....let me go as nature has intended. I have loved and experienced my spiritual self and raised my children in the way they should go...now , I am ready to go....I will not self induce, but if ever when ever it comes my time I will go without the hand of man....

    Thus if I may encourage you and your husband, know that his decision is not a bad one...before the Peg was the understanding ...allow for it.

    Much love and hugs,

    AVB

  • I do agree with you xxxx

  • I am still beautiful ...Hahaha surely there is someone I can fool...seriously I am ok with Bs new journey as I know it is much better than the one on earth...this idea of heaven allows me to be strong....

  • You are beautiful xxxx

  • Yes.this idea of heaven allows me to be strong also when I think rationally about it.But then my emotions get in the way.I miss him so much!

  • Yes, emotions ...they will be stronger than our belief and we have to fight to get back to a stability that keeps the insanity at bay....

  • Praying for you all. Xx

  • Thank you. Yvonne xxx

  • Hi

    So many of us at the moment in the same place, we went to a small party last night, Rog was unable to eat due to his choking, had his beer through a straw but our mates were so kind all talking and hugging him, even though he cannot speak, even managed to get him into his suit! I was so close to not going as I was'nt sure if I could keep myself together emotionally but I did and despite the journey getting him in and out of the car and into his wheels a positive memory was made.

    Sun shining today and the Autumn colours are superb.

    Julie x

  • Well done, Julie. I know how easy it seems to not go.

    Enjoy nature today.

    love, Jean x

  • Brava, Julie. I bet he looked lovely in his suit and was happy to be with his mates. That's a wonderful thing to have done. Nice to hear. Love, Sarah

  • Julie so happy you went, glad you had a lovely time xxxxx

  • Julie I hate PSP xxxx

  • Chris is same, although not choking too much with pureed food. I'm in a permanent heart break. He is very stoical.

    Enjoy your break. It will be good for you to have the company.

    love from Jean xx

  • Thank you Jean everything crossed xxxx

  • The coughing/choking is awful to witness isn`t it and P looks panic stricken every time. I try to remain calm so as not to worry him but inside I`m scared to death !

    We will be faced with the peg question soon I think and I really don`t know what to do. I will ask P as carefully and clearly as I can but I don`t know if he will understand what it entails.

    Have a lovely break - you need it.

    xx

  • FWIW, when Henry was choking, we got him to raise his arms up above his head. It may help to open the passageways, but what it really did, according to HIM, was to give him something to do so he wouldn't panic. Hugs to you both, Sarah/ec

  • Sarah will try it, thank you xxxxx

  • Yes the coughing and choking is the worse thing, when George passes out, I am sure he stops breathing, very frightening xxxx

  • Hi passing out does not sound too good. What happens after that? Do you have to call ambulance?

  • No he nomes too he is red and stiff, just keep calling him xxxx

  • Thank you xxxx

  • Jon is in a similar position but not coughing too much on pureed food and thickened drinks. But the sticky phlegm is a nuisance. He just can't clear it and does extraordinary long throat-clearing noises and at night the same but with something like a cry of pain. He's becoming very difficult to understand because of the gurgle which precedes any vocalising

    He's just come out of hospital after 2 weeks and I can't now manage to get him to stand from his recliner to transfer to wheelchair or commode. He just can't get his balance, stands leaning backwards in a straight line at about 10° from vertical. I can't support him for long like that. Thinking of asking if physios/OTs can help retrain him (or me). Our CHC care has started though so we just have to wait for the next visit.

    We did have a wonderful week's holiday though and I do so hope yours helps recharge the batteries. I found I enjoyed having the manual handling taken off my hands but just as much was having company around and new people to talk to. Your break will be marvellous with help on hand too. Lets hope the weather holds, it's been gorgeous hasn't it?

    Thinking of you both.....

  • Thank you xxxx

  • Atropine eyedrops under the tongue really saved my guy from the horrible problem of sticky phlegm for a year and a half. When the effectiveness then wore off, we had good luck using glycopyrrolate. Both of these I learned about on this site, so was able to ask the doctors about them. We also tried purple grape juice and pineapple juice, which might have helped a bit, and surely did no harm. I hope you find something that helps. Best wishes, ec

  • Atropine is what is in the hyoscine patches they put him on in hospital. It did wonders for the phlegm but gave him myoclonic jerks so he had to come off them. Do you know if drops under the tongue act only locally? That would be a possibility then.

  • He doesn't seem to have phlegm, think the muscle in his throat are very weak . Cried so much today, asked him a lot of questions, then tried to understand what he was saying . Sad sad times. Yvonne xxx

  • Same as Chris. Can he manage pureed food ?

    Jean x

  • Jean he can put he is still coughing and choking, feel like my heart is going to break, hopefully we will have a good week, new catheter put in yesterday antibiotics ready, children have all got there slots, my daughter coming down with us, her partner is picking her up, our son and his partner are on duty for the rest of the time from Sunday, big hug to you Jean, feel you need it as well. Yvonne xxxxx

  • Fingers crossed it works for both of you.

    hug back, Jean xx

  • Atropine and hyoscine are derivatives of similar plants but aren't the same, I believe, Atropine has fewer bad side effects.

  • Thanks. I'll ask consultant. 👌

  • Love to you, Yvonne. This is a very hard trial for you all. It's good you are planning a change of scene. Keep living. It's all we can do! Take pictures. I was just going through mine of the past three years and wish I had more. Peace and strength, ec

  • Thank you beautiful lady feel like we have know each other for ever xxxx

  • Yvonne, well done for doing something positive. A trip away, will do you a power of good also it will boost George's morale. Have you spoken to the Speech Therapist about the food you are giving George? Ours was brilliant, when we got to this stage. Their title is so misleading, as to what their remit actually is.

    Enjoy your holiday.

    Lots of love

    Anne

  • Anne when I rung them she said there was nothing else they could do, we were doing everything possible. How as you holiday? Been thinking about you xxxx

  • It was good. Been on a bit of a downer since I got back. Something along the lines, " is this what my life is about now?" but have slowly picked myself up and have booked a walking holiday, just for a weekend. Now got to get fit, I go in three weeks time, so I guess I will struggle!

    Lots of love

    Anne

  • Well done, Anne. Its tough, I know.

    Good luck with getting fit in three weeks !

    love, Jean x

  • Anne well done, it must be hard for you, but you are getting there by doing different things, I take my hat of to you Anne, I am sure Steve is up there looking down on you, giving you a pat on the back, I really admire you Anne, for how you looked afterS and for all the help you have given everyone, and still do. I hope your walking weekend will be lovely, wish I could join you, but I am so unfit. Big hugs Yvonne xxxx

  • You are both in my thoughts and prayers Yvonne.

    XxxX

  • Bev thank you lovely lady, how was your trip? Xxxx

  • Dear Yvonne - I'm so sorry. This is indeed such a cruel illness - so much pain, so much grief. I hope your trip to Norfolk goes well and you and Geoge are able to enjoy it as much as possible. xx

  • Thank you. Yvonne xxxx

  • Hi Yvonne, sorry George is having such a difficult time with choking yes it is so heart breaking to watch them go threw this horrible disease it's just so on going one thing after another with psp, my brother is to the point now we have to feed him can't get him into the shower anymore hate to think that he will be bed bound soon, I look at him and just cry. Yes I will pray for you and George. Take care. Nettie

  • Nettie also you all the luck with your brother this is a hateful illness xxxxx

  • same here i just want to cry

  • Horrible horrible illness xxxx

  • Hi Yvonne,

    All the best to George and to you and the family . It indeed is painful to see a close one not able to eat food.

    I have just joined this forum and am in India. My mother has PsP for about 7 years now and she is in a similar stage as George in terms of choking. She in fact cannot speak now which is also an outcome of PSP. So we make do with Yes and Nos for QnA.

    I have a speech therapist for her who also does face muscle stimulation which I feel as helped last 2 years or so to be able to swallow something. If you have something similar there .. you could evaluate that.

    My mom too does not want a PEG and it's a situation of no food going in at all at some stage vs a PEG that can give nourishment to the body.

    Doctors here have said that even the basic medicines for PSP need good nourishment (via PeG in her case) for them to be effective.

    Have got Ultrasounds and X-rays etc done before we finalise any procedure.

    My suggestion to anyone thinking of delaying a PEG probably would be to get a scan done or X-ray esp to see how the lungs are given the chances of food going that way.

    Have quality time with him in Norfolk and god bless.

    Best wishes

    Anshuman

  • Dearest Yvonne,

    I haven't posted recently because Charles is in such a bad way like George. Choking and coughing and can't breathe. They think it's pneumonia so each breath and each choke makes me cringe. My heart is broken like yours.

    He also is so sweet now, like the old Charles. Like George, I think the PSP is leveling out and the will and the impulsiveness is leaving.

    Take care dear one. I'm with you in thoughts and prayers.

    Cuttercat

  • So sorry to hear how bad Charles is.

    Chris is bed bound but can still manage pureed food without too much choking - but it gets worse each day. He doesn't want a peg and I agree but its a hard road. He also is calm and sweet.

    Big hug to you. love from Jean x

  • So sorry to hear Charles is not good, a lot of us are at this stage and it is horrible. Sending you all a big hug xxxx Yvonne xxxx

  • Hi Yvonne, sorry you and George are going through this awful time, my heart goes out to you both. I've noticed W is coughing more frequently now at meal times but nothing compared to what George is going through.

    I hope you and George have as good a time as is possible in Norfolk and weather is kind to you.

    Lots of Love, Nanny857 xx

  • Thank you xxx

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