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PSP Association
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Pneumonia and UTI

My husband has been in hospital for a week with the above. Hopefully,he will be home soon. The docs seem to expect him to get them again and have been talking about a living will. He did not want to sign one and I expect, still feels the same. I haven't asked him lately, it is too insensitive and he is too weak .

I am hoping that we get some carer help when he comes home. I will not be able to manage. The company that we use at present cannot provide more than the morning call due to staff shortages. They told me that the NHS told them that they will provide half the care costs. They haven't told me, in fact they haven't been in touch, despite me asking for our contact to ring me as she was out when I called. That was two weeks ago.

My husband is in a bed next to a man with dementia who shouts and sings at the top of his voice. He did this throughout our weekend visits and we could not hear my husband's attempts to talk to us. When we complained we were told that there was nothing that they could do, despite the fact that he was causing discomfort to the rest of the patients. Luckily, he slept most of the day on Monday and Tuesday, but apparently was in good voice again during the nights. That is why my husband was so tired.

You can probably tell that I am very "down". Sorry, I just wanted to get things off my chest. X

11 Replies

Oh dear hopefully he will be home soon, they are much better at home, our hospital, dies home from hospital, where the nurses come in 3 times a day, George was much better in his own home and bed. Sending you a big hug. Yvonne xxxxx

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I'm sorry R1. It does sound like you have reason to be a bit down. I know it always seems like there is always something in the way of a fair day....I think once your husband gets home he will feel better and so will you....I will pray that that's how it goes.


He gives power to the faint; and to them that have no might, he increases strength. Isaiah40:29

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Hi robbo1

Before he comes out of hospital get the hospital social worker involved to try and get the help that is needed for you and really the hospital should look into it

Fortunately or unfortunately for them I am a very strong willed person and I always tell them and I don't take bulls--t from them . Get the sister and speak to her about things on the ward

Hope that things get sorted for you soon and take care

Sue xx


Thank you, Yvonne, AVB and Sue. It is good to have support from people who know how hard this journey is. The text was uplifting AVB. Thankyou again, each of you.X


Hospitals are not the most peaceful of places when there is a noisy patient, not that he can help it. Ben was in 3 hospitals for 13 weeks last year and they were all very different. Our most local main hospital has all private rooms and although that sounds lovely it was a nightmare because there aren't enough staff to keep an eye out and Ben tried to get to the toilet on his own and they found him on the floor, very dangerous place I thought. The local cottage hospital was much more friendly and relaxed but this was just for recovery and physio to get Ben more mobile before he came home. Waited three weeks for a care package to be put in place, they were trying to get Ben to go into a nursing home because he was bed blocking but both Ben and myself said no and there he stayed until the package was in place. Ben has made his wishes known and doesn't want any intravenous treatment that will prolong his life and no PEG, very scared for me as I have POA for health and I will be hard to follow his wishes but I will stay strong and do what he wishes for. The only treatment he would accept is for comfort and pain so if he broke another limb he would consent for treatment to relieve pain as this wouldn't necessarily be life threatening. This is a sh----ty disease and it tests every emotion in the book.

I hope that your hubby is soon feeling better and back home where he will be much much happier.

Sending a big hug.

Love Kate xxx


What a nightmare! Hope things ate better now, Kate. X



I can so relate to what you have written as sounds very much like my Mums hospital stay last year. She was in a bay with dementia patients and it was so draining as not enough staff to meet everyone needs.

Hope he is home soon and stand strong that you need more care in place.



Thank you. I will. X




Hope things are a bit more positive now. It sounds awful and we are always left feeling inadequate.

big hug from Jean x


Thanks, you are both right. I feel exhausted with fighting in his corner! X


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