Finally, quiet, calm and peaceful

After another 12 hour coughing and choking night today is quiet and peaceful. Charles and I had quality time together and he apologized for his actions. Whatever they are to him, I don't know, but he said he's afraid.

Last night he asked that I spend time in the hospital bed with him and I think it helped him. Plus I was there to hit his back, give him the nebulizer and offer support.

Thank you Easterncedar for the grape juice suggestion. It helped a bit but when it starts there seems to be nothing to stop it.

Is this what happens to every PSP patient? I know I see it posted and with the secretions not going anywhere do they continue choking until they stop eating?

Remember Charles is an RN so he knows but still admits his frailty. Perhaps he knows it's not long? Anyway, we are here warm and safe (thank you Heady) and watching a documentary. He's almost asleep.

THANK YOU EVERYONE for your support!!

Cuttercat

16 Replies

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  • There's a beautiful sweetness to what you both shared that , I believe , most healthy couples never get to feel. Sending love and caring thoughts.

  • How kind of you.

    Cuttercat

  • So pleased to read that you have found some peace at last !! And, hopefully, your conversation with your husband will have cleared the air a little? He probably won’t be able to control his reactions, I know that I’m guilty of behaving quite badly at times, when things have not gone to (my) plan, I can be horrible to my husband who is, actually, a very kind, supportive person and that, despite resolutions to not lash out, I probably will - and I am still relatively early stage on the PSP road.

    Ann

    PSP

  • God bless you. I think patients know there is something wrong but since they can't control it they try to control what they can. We are only human. Thank you for the insight

    Cuttercat

  • Patienan,

    It does help me to understand the early stages of my husband. Did your lashing out and such begin long before the PSP diagnosis? Thanks Joan

  • Although my hubby is at home in a hospital bed I do manage to cuddle him close and stroke his face. I believe this comforts him but he cannot say. What you are doing and how you are coping is wonderful. Love Jxx

  • Thank you for sharing that beautiful story. I believe our loved ones are still 'in there somewhere' and when you see it you forget all the pain and torment that this horrible disease brings. ♥ god bless you both. X

  • Hi there Cuttercat - I am so sorry to read about what you are both going through at the moment - it is funny isn't it, as I have not read anything officially about the coughing aspect that so many of us seem to be aware of - for me, my coughing is quite variable and I have two things which I am currently working on to account for the slight improvement in my coughing status. The first thing - as a recommendation from a Speech Therapist (whom I was seeing as part of a Rehabilitation program), is chewing gum - yes I am not joking!!!!!!! Apparently when you are chewing gum, you automatically swallow and you do so very regularly which can also help the cough!!! The second thing is Salt Therapy.......... now I am not sure what you all have in this regard in the countries in which you live, but here in Brisbane (in Cleveland to be exact) we have a SALT THERAPY room which is fantastic - I am going there once or twice a week and for an hour, I sit in the room which has salt coming through the air system and I can breathe it in as deeply as I want to because there is no irritation etc etc. at the end of the hour the lights go up again and the conditioned air is turned off - the room itself is very relaxing and I find I don't need to read although some people do, but as the therapy starts the lights dull and the sound of the sea takes over...om the ground there is sand and you can take your shoes off and walk on the sand, or else you can wear a shoe cover over your shoes. I am finding even writing about it I am beginning to feel incredibly relaxed!!!! I shall go and tell my hubby very shortly!!!!

    Anyway that is my two bobs worth about the coughing - I truly would be very interested to know if anyone has found any literature about coughing as it relates to PSP......... well thank you for reading my post and I sincerely hope that everyone is okay on this site (and I know that it has been said before, but I shall say it again - what a truly fantastic site this one is !! :) :) :) ).

  • That sounds a wonderful therapy, bet you feel really relaxed after that and hope it helps with the cough.

    Love Kate xxx

  • So happy you got that time together, it sounded so beautiful. Always here for you , saying a prayer for you both. Yvonne xxxxx

  • Ben loves a cuddle, they need that feeling of closeness in their lonely world, trapped by the ravages of PSP. Sometimes I have to tell myself to stop and spend time touching, squeezing his hand, cuddling, I can see his face light up.

    Keep warm and safe together, sending much love

    Kate xxx

  • Tears in my eyes, sending hugs

  • Bruce choked on everything...He wanted a PEG and thus he was given one. He used it for about 15 months . And may I just support you in getting into bed with him give him everything he wants, ultimately it will help you hold on to a bit of happiness. B and I shared the last hours in bed together ...... Love you guys

    Do Well,

    Andrea

  • Cuttercut I am so glad you had a nice time with Charles. I am sure he is so worried and scared. So it was nice to be able to have some quality time with him.

    Give him another big hug and lots of cuddles as long as it's possible. Bless him for apologising to you. He sounds like a very nice man.

    Marie x

  • Does the cough begin when the person lays flat? I seem to notice that with my husband and also he doesn' t give a hearty cough which makes clearing throat, phlegm/whatever not easy and maybe not possible. I thought he was afraid to cough due to a hernia repair but it's been 2 years now since that.

  • No the coughing is all the time. The list of things I do to try to help is endless. Nothing works. But right now he is on antibiotics again and it has settled down. Pneumonia perhaps for the second time

    Cuttercat

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