Home at last!

Hi, just got home from bringing S back from the hospital! Couldn't find anything wrong, so I suppose it was just PSP flexing its muscles! As if we are not aware already!!!

Managed not to fall, some minor miracle! Now told to be on a soft diet for the next few days. Asked what that meant, soups, light meat, no heavy, bean filled stew, that he was very happily eating. When I queried what he was eating, nurse said, "but that what he ordered! How on earth am I suppose to keep him on a special diet, if the hospital can't!!!

Nearly left him in there. Tried to get him dressed and was hit and kicked. I know he had had enough. So had I, the trouble parking at this "wonderful new hospital" was the biggest joke of all times. Ended up in the multi story car park, 10minutes walk from the entrance. Thankfully, S's daughter was there, or I don't know what I would have done. Marched him around in his wheelchair, in the rain, or left him by the door waiting for 15 minutes, (and we all know what would have happened then,( back to A& E))

My thoughts about PSP today? Sorry, think I would be banned from the site!!!

Sending my love and support to every one of you and thanks for your concern of the last couple of days.

Lots of love


16 Replies

  • Can so relate to the feeding , John will ask for sandwiches lamb chop or sausage .

    Anyone else would just give it to him , he can only manage puree but still would like to be able to ear normal .

  • Since getting the PEG B is afraid of food...? He won't eat anything and he can swallow some.....But I would suggest that you might write the hospital and tell them of your experiences...from the walk to the menu...As they are new , they need to know where to fix things...and still have money to do so. Can S still communicate? and if so is it orally or does he write it down? Well at least he is home . Go on line to see what kind of food causes gas and steer clear from those foods. beans, cauliflower, Kale, uhm meat(?) it takes alot of time to digest and can build up gas....also try to get his knees up to his chest and let them rest there as he is laying on his back or side that sort of opens up the door if you will for happy release.....just open the window for fresh air....hahaha

    Thoughts about PSP...wouldn't we all be kicked off this site.....if it could kick us out of PSP all together then !@#$%^& !!@#$%^&&**, And....you can go and dyxj yourself, PSP!

    Sorry that wasn't very Christian of me now was it *~*

    Sayin it like it is,


  • Oh, if only!!!

    Lots of love


  • I am afraid i try to give Brian what he wants. As long as it is finely chopped. When he was blocked he didn't eat very much at all just drunk litres of shakes and juice And only nibbled on food.He is now eating a lot more so we are all happy.

    I now give him a laxido every other day and some lactulose every day to keep him moving.

    Do you come under the new penbury hospital or the daranth valley hospital.


  • No, we are Bristol! If only I could get S to drink anything, solve most of his problems. Back tonight, won't drink, doesn't want any laxatives. We will see what tomorrow brings. Don't think I will unpack his bag, just change what in it!!!

    Lots of love


  • sounds like its time for a talk with the dr.....could be a good laxative every other day may do the work!

  • At one stage i had a hard time getting him to drink but now he will drink lots of sweet juice and he loves strawberry milk. He is not so keen on tea and coffee. Not sure if its the sweetness or the temperature.


  • Strawberry or Chocolate milk shake, is about the only thing I can get down him.

    Lots of love


  • All counts as fluid so if S will drink the milkshakes encourage him to drink more of them.

    When i get my shopping i always buy the cartons of flavoured milk because they are easy to use and as he can drink nearly a whole carton in a day plus juice i am now to lazy to make the nesquick shakes.

    Hugs Janexx

  • What a nightmare that sounds, when hubby was in emergency respite, horrible room, a couple of weeks ago, I visited and found him just about to tuck in to a big hearty meat and two veg meal, even though they had written instructions from his speech and language therapist to give him soft food!!!!!

    hope all has settled down a bit now, it's truly a hard road.....xxx

  • Heady glad S is home, hope all goes well for you, sending you a big hug, xxx Yvonne xxxxxx

  • Thanks for the hug Yvonne. Needed that badly. You don't realise how tiring it is, having to keep going to and fro to the hospital, never knowing when he is coming home, until you are actually doing it. I have been very shocked at my lack of coping this time. S has had several visits to hospital, I have never been this tired! Please don't suggest I go and see the quack! That is one thing I definitely am NOT going to do!!! I just need to sleep, for a very long time!

    Lots of love


  • Heady wish I had a magic wand, to let you sleep, and feel better, hospitals are horrible, never get any answers, they should try and live with PSP. This horrible illness takes it out of use all the time, hoping you have a good night. Myself I have never felt so tired, just can't be bothered with anything.

    Bit of good news I am going away again with my sister in law, my darling brother is coming down to help out, should be a bit easier with the careers coming in, can't wait until next Monday.

    Take is easy heady and look after yourself. Yvonne xxxx

  • I do think the tone of your post indicates a 'new, livelier Heady'. Hopefully this is because you had a break while S was in hospital. Take care. P

  • Heady glad to hear S is home even if he is being cantacerous, hope the laxitives work. (M bouncing between bunged up and too loose). Know what you mean about hospital parking ours has introduced a park and ride great idea but bus only has one wheelchair place ridiculous for hospital transport. No undercover parking or bus stops, so we always get wet. I think it is a way of keeping their numbers up for A&E (ha!).

    Anyway best wishes for a good day Time

  • Don't think these planners realise that people with Blue badges or need wheelchairs, ever go to hospital. Probably, we all try not to because we can't get there!!! Perhaps that why they issue so many badges now, it's saving shed loads of money. A bit of paper or a hospital bed plus extras? no contest really!!!

    Lots of love


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