Desperate

Tell us a bit about yourself here.
Sorry for the long post but I could do with a quick answer if anyone can help.

My mother has been in hospital for just over three weeks now and it looks like they have now moved her to a ward where the next step is to send her home,.
She went into hospital with a recurring illness that she was in hospital only six months ago with the same symptoms, apart from either copd or asthma they cannot make their mind up, she is complaining of tightness in her chest and extreme tiredness, weakness and although she doesn't complain too much about it, breathlessness.
Plus she has a bad hip which means she can only lay on one side.

They have canceled a Gastroscopy procedure on four separate days, so starved her of food and drink for at least 16 hours each time and without giving her a fluid drip until I kicked up a fuss, although it was in her notes from the doctor!!
She has been fed cold food, we complained about this and it did change for a while, had drinks put out of reach, she has had clothes go missing previously, and just a full bottle of squash and a magazine this time.

My wife, my self and my mother have all contracted the norovirus whilst she has been in hospital.

I have spoken to her consultant who says that according to the machine they check her with she is medically fit, and that the norovirus did not show in her blood tests although two nurses told her she did have it, and, that she was going to be moved yet again into another hospital for some more physiotherapy.
She is still very weak to the point where she struggles to get out of bed.
And because she wants to get out of hospital she is agreeing with anything that is said to her, again without involving my wife or myself.

I am worried that now she is in this ward and the physiotherapist is forcing her to walk that they are going to send her home before she is able to cope on her own, or whether we are able to look after her, and, without asking or involving us as carers in any of the decisions.

We feel that we are being trampled all over and have no life of our own left, and are about at the end of our tether with all of this, the caring the complaining the fighting to get what patients should be getting.

We are so tempted to give up caring but how can we, she is my mother?
I feel that someone needs to be told how unhappy we are with this situation.
Please can anyone tell me what to do next?

Peter
Hi and welcome to the forum.
Plans should be put into place before discharge, something that you need to talk to the hospital about.
I can't give you much advice signman but I can give you lots of empathy!

My mother has also been in hospital for 3 weeks and they're getting her to walk and even tried her on stairs - they won't be trying that again in a hurry, they thought they'd killed her!

They can't 'send her home' without a care plan in place - would she be going home to your house or her own? Although in the case of my mother it's extremely unlikely (impossible probably) that anyone would try to get her home in her current condition her neighbour and I have made sure that we have the only keys to the property so if she should convince someone that she's well enough to go home then they won't be able to get in to her house anyway (I know this is an unlikely scenario but this did actually happen to a neighbour of mine, her sister came home to find her on the sofa still in her hospital gown..)

You're in the right place here to get answers. If you read through 'my' thread (currently the one below yours) you'll find masses of advice from people who've been there and done that. I've compiled a list of questions to ask and points to raise when (if) my mother is eventually ready to be sent home.

As for ensuring that she is treated correctly in hospital, well that's not always easy. I'll admit that my mother and I don't really get on much but I will not stand for her being treated with less than all possible dignity and respect while in hospital, especially as the hospital that she's in has a very bad reputation and the ward that she's on had a very bad negligence case late last year......... I've made a point of cultivating the most Senior ward nurse that I could find and always make a point of thanking her, and all others, for good treatment and good care, always making myself obvious when I'm there and complaining firmly and calmly when there is a problem - so far we've only had a couple of problems but they've been sorted out quickly.

Doctors are another matter - as I'm only able to visit some evenings and at weekends I've never actually set eyes on a Doctor.

Does your hospital have a Patient Advice and Liason Service, or similar?? I haven't needed to use them yet but I have spoken to them and they seem very supportive and willing to help and can tell you who to contact and how things work. I'm keeping quiet until the Social care team start talking to my mother as I don't want them to think I'm a willing carer just ready to give up my life - because I'm not.

When/if my mother is sent home I will insist that I need some time to adapt the house to make it feasible for her to be there on her own, with carers, as I have to work and live 35 miles away. I'm going to try and push for rehab which will give me more of an idea of whether she'll cope or whether we need to consider a care home.

I have told my mother that if anybody speaks to her about going home she is to tell them that they must speak to her daughter because she is not allowed to make any arrangements that involve me unless I agree to them first. Like your mum she is very keen to go home (totally understandable) but I've made it very clear that her going home has to be practical for both of us and I will not be able to give her any assistance unless it's agreed by me first. My mother is an extremely manipulative and stubborn woman but she forgets that I've spent 60 years learning from an expert :D

I do wish you luck and hope it all works out OK but the main thing to remember is that whatever plan is put into place needs to suit you first and everyone else afterwards.

NB: a week ago I was terrified of her coming out and the impact it would have on my life and I felt pretty helpless against whatever was coming but if you read through some of the things that people on here have dealt with, and survived, it certainly does toughen you up!!
Demand an "NHS Continuing Healthcare Checklist" is completed. Google this for more information. It is laid down in the rules that this should be completed as a matter of course before discharge, and you should be involved in the completion of the checklist.
No practical advice for you, Peter, as you've seen in the other replies there are others that have much good advice to give, but wanted to extend you my sympathies and I hope this situation is sorted out properly for all of you as quickly as possible.
Hi Peter
I just wanted to say welcome and also that if you have had the dreaded norovirus, then I expect that it has left you feeling wrung out and depressed, on top of everything else, so it will be an added factor in how you are feeling. I always seem to get ill at a bad time :dry:
Hi Peter,
I would suggest that you ask social services to appoint a care manager and get them to do an assessment, ask them to find respite care for your mother, explain that you are exhausted and need recovery time yourself. If you can get the doctor to make a recommendation even better, ask for a meeting with those dealing with your mothers care, this should take place at the hospital. Make sure you are heard.
Good Luck
Madfloyd
Hi all,
Thanks for all of the replies I have read them carefully and hopefully will remember the points when I need them.

So just a recap on our situation,
(Thursday) Mother has had the camera procedure and all is well, no ulcers or bleeding in her stomach.

(Friday) Had a chat with a doctor who told me that they may not be able to get her back to 100% fit (her words) she may also be taking too many tablets so have stopped some? she was taking 33 per day prior to hospital, and that the consultant has said she is medically fit and may be able to go home, will keep her in over the weekend. I looked at her and said you are joking aren't you, look at her, she can hardly lift a cup to have a drink, and she cannot get out of bed on her own. The doctor now knows my views on this comment, also told her the Physio are pushing too hard, the machines say she is medically fit so that must be true then.
I had a long talk with her afterwards regarding coming home in her state of health and I did get rather angry and upset, and I upset her too, as I know that she's desperate to come home but is just not yet fit enough.

(Saturday )Physio have walked her to the toilet a few times but she is exhausted when she comes back, and have had a chat with her about either going home, her own home, into a care home or into another hospital for some more physio, which upset her by her thinking that they would make sell her home and contents and end up in a care home.
I have ensured that this is not going to happen which eased her mind.

(Sunday) Mother felt a little bit better as the day went on couldn't reach her drink again so was really thirsty when we arrived.

Yesterday she was looking better and had been thinking about what we spoke about regarding her coming home, whether we could manage etc, and has agreed that it was stupid of her to think she could come home yet, earlier she was taken by occupational therapy to make a cup of tea and couldn't manage it.
She told me that the consultant says she still has a chest infection so has been put on yet another course of antibiotics!!! But she was okay to come home Friday!!!
So I am expecting her to be a bit better today and maybe now she will be fitter to come home in a few days.

Best regards
Peter.
Peter, make absolutely certain that they know you want the "NHS Continuing Healthcare Assessment Checklist" is completed BEFORE any talk of discharge. You should be involved and then you have clear written evidence of how good/bad they said she was at a certain point in time. Google this for more information.