CBD - How far we have come in 6 weeks!

Each day has been a blurr, especially more recently! My man was hospitalized on May 2,walking with difficulty with a walker, continent, in control of most of his faculties, able to understand doctors and make decisions.

Today, he is very stiff, sore when moved, eating yoghurt spoonfed to him, barely able to communicate, and drinking so very little.

He stares at me with wide open eyes and becsuse of this website, I think I understand him! I recently read a post tslking 'a terrified wide open stare' and it struck a chord. That is what I am seeing in his face! And he constantly puts a hand to his forehead like running fingers through hair (but he no longer has any there!) and I interpret thiscas worry. I have seen these actions daily for the past three days while at the same time seeing various stop working.

So I made sure I told him that I knew he was still there even if he cannot speak. When I kissed him, I felt his immobile mouth try to form a moue to kiss me. Just enough to give me an answer!

He is now eating mostly smooth yoghurt and being fed without trying to help. He blows bubbles with a straw and can only lift the drink partway up the straw, so it is no use any longer. After 2 days when the nurses got good evening meals into him, he now eats very little, and mostly mashed soft vegies with cream - I have left out the meat as he is not moving the food around his mouth much and the other day when he chewed, it stayed in his mouth long after it should have. So it is a choking hazard! Tablet taking is slso becoming difficult as he finds them difficult to move in his mouth to swallow them. At least the nurse tonight is as aware of the new problems as i am, not that she can do much to help!

Dietician came a few days ago at my request. She has promised 2 yoghurts each meal tray, so he can eat something. They started arriving today, hooray! We talked about difficulty swallowing, but at that time neither she nor the physio could see a problem - so they will review Monday! Meanwhile my man needs well mashed soft food to eat NOW 2 days later!

The lovely nurse came back with the suggestion to get a sipper cup, so I am off to get a Tommee Tippee cup and some baby food tomorrow! Should tide us over the weekend!

There has slso been an issue with the IVs administered. Apart from all the bruises, thecdrs are now wondering if he was being over hydrated as he has had problems with fluid on lungs, stomach, knee and swollen feet. They have given fruisimide to reduce fluid and have left instructions over weekend to oncall dr to hold the dose if he gets dehydrated. Meanwhile he has drunk about 200ml today and passed about 1 litre.

By the way, got the nebulizer scripted Tuesday by ward dr, after a frantically busy registrar saw him over long weekend and said nebulizers were old hat and not used now - or words to that effect!!! Hope a message has been passed to him that my man suffered several days for want of old hat meds that immediately improved his breathing! After a couple of days, his breathing is easier, though by no means 'normal'.

Two weeks ago, - no, only 10 days ago - he was unresponsive with temperature and dementia. Now he is here, unable to speak clearly or feed properly and sleeping heavily - and we have an assessment appointment on Monday to get him out of hospital and into his restcare room on Tuesday! And I wonder, what might go wrong this time!

Last time it was suggested that assessing him when unresponsive might give a unrealistic result. I cant see what difference it will make if the same happens this time. He is already hospital grade care, 2 nurses and full sling hoist needed, his room is chosen to accommodate all that, so...... I shall be pleading his case to get out and settled so he can have a private single room where he can rest peacrfully, and all my sweet nothings don't have to be overheard!!

Wish us luck!

15 Replies

  • Wishing you all the luck in the world, sending you a really big hug🌹🌹🌹🌹your post has made me feel so sad for you all, really hope all goes to plan xxxxx

  • Thank you. Have just finished watching a video posted a while ago on this site: "Gone from my Sight" by Barbara Karnes, a Hospice Nurse Educator. She talks graphically about the signs of dying. I cried a lot, but it has given me so many answers to my questions.

    I recommend it to anyone in my position as i feel it has given me some knowledge of how to face the process and get my man through it, hopefully reducing the fear he now has.

    Whoever it was posted it - thankyou so much!

  • I will check it out. Thank you.

  • Sending you very large hug and lots of love


  • You are in my thoughts and prayers for a move to a better room soon.

    Sending a big hug.


  • Oh, its tough. Hang in there and really, Good Luck.

    Does he understand what is hapening to him. I don't mean PSP, but the current symptoms etc?

    Sorry if this is a bit dumb, but some folk need it exlained a few times and with PSP and memory constantly, sometimes.

    Just thought.

    I respect your fortitude.

    Strength to you both.

  • B****r... Sorry, CBD (and PSP).

  • I understand what you mean. I think he must know what is happening. It has all been so fast, tho, and I guess it has taken him by surprise. I was able to talk with him briefly about wills and such before he went into hospital, but he was reluctant to face things then. I think the signs of fear and worry show where he is at. I have told him I know he is hiding inside and he seems a little calmer. His level of sleep varies a little but there are times like today when he can tell me he is feeling better. I believe I have time to have this necessary conversation with him and hope it will be in the new single room.

  • Hi Honjen, do you have things like Living Wills, or Lasting Power of Attorney where you live. Where the person can sign a legal document handing over their decision making to a trusted person whilst they still have the decision making capacity to so that?

    For Liz and myself this document is almost as important as her will. It gives me the power to accept or refuse life saving treatment as per her wishes when she is no longer able to do that. Also to manage her affairs in her name, sign legal documents on her behalf etc.

    My apologies if you are already aware of this stuff.

    Caring is so tough at times. You sound like you are doing so well.

    Wishing you both good luck and the best that can be had of the situation.

  • Yes. We both signed Enduring Power Of Attorney in 2007. Dr has to sign that my man is no longer of sound mind and has been discussed as part of discharge assessment. Had slightly better day yesterday when he told me he felt better than day before. Staggeringly, he is still eating cornflakes for breakfast! When I see him later in day he can't chew so don't know how he does it!

  • Thank you Kevin_1

  • So sorry about all this. I hope you are able to sort it all so you have privacy and peace.

    Thinking of you both. Love and hugs,

    Jean x

  • My heart breaks for you. You are amazing! You are staying strong and being an advocate for him even though I know this is not easy for you. I hope you get your peaceful solitary room so you can have private time together. Prayers and hugs to you. xo Jayne G.

  • Sending you much love. Hospitals really do not help patients at times and so many times hear that people come out worst than they went in. Hope the single room is there for you & feel more comfortable and looked after x

  • You both have our very best wishes and prayers, Alex ( psp sufferer ) @ may x

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