Hi all one thing after another, George has to go into hospital tomorrow, had a phone call at 4.45 today, to say that they have not got any beds, so I thought they would give us another date, but they said they would put us into a hotel, and George could go into the hospital everyday, I was so looking forward to having a goodnight sleep while he was in hospital.
Not happy that they left it so late to let us know, children are saying we should wait for them to find him a bed at a later date, as they think it would be to much for me to cope with, we live out of London, so it is not easy for the children to support me. Also George is in a wheelchair most of the time, just can't believe this has happened, as anyone else experienced this? Not sure whether just to go to hotel and finish it, I am so tired I really need a rest. Any comments would be appreciated. I tried to ring them back this evening and they had finished work, just can't believe all this. Yvonne xxxxxxxx
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What a pain! Is it a hotel suitable for wheelchair users? I don't mean just wide doors and rails in the bathroom. Will it have everything else you require? I don't know what the hospital treatment is and if it is urgent but if it isn't I think I'd ask them to wait for a bed. The effort of getting him up and out every morning will be exhausting for you and probably stressful for George. If it is important that he has the treatment now I suppose you will have to go but I wouldn't be happy either.
NannaB he is going in for some tests so it is not urgent, think I will ring them in the morning, and tell them I will wait for a bed, just don't think I will be able to cope, it is different in your own home, with wet beds etc. I will feel much happier with George going into hospital when they have a bed. Goodnight sweet dreams Yvonne xxx
NannaB is right if it is not urgent and the stress is worse than the resolve, than wait......That does not seem very professional of them but maybe this is their protocol....Do what is best for BOTH of you!
sounds like a ploy to meet targets i am sorry but I am cynical when they provide a solution so impractical.It would surely distress George as well as you.For both of your sakes wait for a bed but drop your GP a line to tell them they might be able to pull strings.Take care of yourself,you are Georges biggest asset.px
Yes I woke up with a headache the thought of going through all that I do at home in a hotel room is distressing, going to ring them, I tried to ring at 5.05 last night and no one there, and you could not leave a message, feeling so stressed this morning,fee like screaming, well one day at a time, sometimes I feel like we live on a remote control life, if that makes sense. Will keep you updated Yvonne xxxx.
Oh Yvonne staying in a hotel would be a nightmare. Until C's incontinence kicked in we were always taking trips and staying in hotels (cheap to do here). All that stopped with the incontinence as even resourceful me couldn't think of a way to avoid wetting bed. And I did think. Could take my own bedding but how would I wash and dry it? Take enough for how ever many nights we would be away and just bag dirty stuff and leave in car boot till we got home? On and on I went and eventually realized I was making myself more tired with all this thinking and declared it would be day trips from now on. Tell the hospital you'll wait for a bed. I am also particularly weary at the moment after a few days of disasters in terms of breakages. Starting to understand how easy it would be for me to also be ill and that would be a disaster. Take care. Pat
Unbelievable that the powers that be expect you to cope with hotel stay and daily trips to the hospital. Also not sure how the hotel would feel about wet bedding etc. Seems that your and George's needs are not part of the equation, it's crazy. Hope you manage to sort a more reasonable solution, best of luck. Yet another fight that you shouldn't have to take on. Kate xx
Totally agree tell them you will wait for a bed, inform your GP and ask them to rearrange the tests. Definitely hospital target meeting, maybe when you have had arest contact the NHS ombudsman they should take care of your needs as well as the patient's. Good luck hope you get some sleep best wishes Tim
Following on Amilazy's suggestions, when you have a moment you could also write to your health authority and to your MP, copy to each. The hospital's proposal, which presumably is their standard practice, is unacceptable for someone suffering from PSP. You might ask who decides and how well-qualified is the person with this responsibility?
Well we tried for 2 hours to get through, we spoke to one lady that rang me back, and said when you put your phone down you must not talk about people, I was amazed, then she said God bless you and put the phone down, my daughter had just spoken to her, and what my daughter said was mum your phones are really, bad you can't hear, my daughter phoned her back and said you have upset my mum, she has not sleep all night worrying, and told her she was talking about my phone, and my daughter said I would not say anything about you all, my dad is terminally ill. We phoned later and spoke to her boss, she apologised, still feeling upset. That is not the end of it, they did not cancel his appointment, George has joined a trail for PSP, and the person called John who is one of the doctors came over to say hello, and he was told we had not turned up, what a mess.
Had to phone back and explained again that we were not coming, as we had already said, she is going to send us another date, really frightened they will black list us. Feeling so stressed feel like crying. Yvonne xxxxxx
Hi Yvonne, my baby is lovely! Sound asleep at the moment. As been very shy, slept most of the time since we got him home. Is starting to come out of his shell a bit more this afternoon. Eating fine and everything else is working correctly, so he is fine, just a bit nervous. Last night, he hid when S starting walking around, but getting use to the walker, slowly, but S has been at the hospice all day. Trying to take a decent picture, but with him being Jet Black, it is difficult to get the lighting right, to make out his features.
Hope you are feeling a bit better now. I will post a story about my bank in the next day or two!!!
Yes Heady feel stressed going to eat and relax, can't wait to see a picture of your baby. And waiting for story about your baby !!!!
Forget to say we had a phone call from the hospital, George to go in next Wednesday, so hopefully all will go to plan next week. Have a good evening everyone Yvonne xxxxxxx
All worked out fine in the end after a stressful morning, George is going in next week let's hope everything runs smoothly and they have a bed. Hope all is ok with you xxxxxx
Thank you Jill let's hope all goes well. Audrey you need to look after yourself so you can be ok for Don, I think you need a bit of you time, try and get some time for yourself, you need to ask for some help, to give yourself a break. Big hugs Yvonne xxxxxxxxxx
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