I want to discharge my father from a medical ward to protect his mental health

[outernational]

I have been a sole carer for my elderly father in our shared home for the last 2.5 years. He has Alzheimer's/dementia, early stage cancer (but has been asymptomatic for over 2 years.) He has, during the past 6 months, become bedridden and his appetite is waning. Until now I have called out health professionals, community nursing staff, district nursing staff and GPs when needed but I have otherwise coped. I have Carer Vouchers for use when needed. I have cared for both my parents with cancer, my father with dementia, for 6 out of the past 11 years. I have not come up against the following problem before and would value someone's advice.

He recently became anaemic only a month after coming off iron pills and a GP suggested he should be admitted to hospital, leaving the decision to me as he explained he may need to go in again and again for the same thing, when it may be a palliative care situation, and I had expressed my concerns about the hospital keeping my father in longer than necessary until his dementia went haywire. The reason for my concern was what happened after a previous hospital stay, when he had been transferred around wards for 10 days due to them cancelling 3 gastroscopies. It had been his longest break away from home since 1987, and a length of time so disorienting that when he came home he no longer remembered where we kept things or even which bedroom was his. He had returned home a different person and has never been the same since. Older people rely on routine, familiar surroundings and faces, and if something breaks that they become highly disoriented.

He was admitted for a blood transfusion a week ago, which was done and dusted in 2 days. They have done nothing else for him, not even investigating how he came to be so low in iron a month after coming off the pills, or to determine if cancer really is causing his shortfall in appetite (there are no other supporting symptoms). The ward has not been forthcoming with information, and even snappy and abrupt when I rang to ask, and it has taken an enormous amount of effort to contact an appointed social worker (2 days of phoning and leaving messages) to find out by another avenue - that they are ready to discharge and regard him as medically fit but have completed something called a CHC Checklist, which means there needs to be a meeting with a District Nursing Liaison person, but this cannot be for another week.

So my father has to remain in hospital for a total of at least a fortnight, possibly longer if they need to wait for any decisions and planning to be implemented before discharge. They are talking about holding a meeting on the ward when they're concerning themselves with a discharge to his home, wouldn't it be better for them to attend his home instead? The basis of this does not seem to be for the patient's well-being, although that is how it's presented, but in order for the various NHS departments to decide who will pay for his future health care so they have the funding. I could imagine scenarios where by the time they have sorted this out an inpatient, perhaps someone terminally ill whose wish was to die at home, will have expired on the ward, thus saving them all their future continuing home care expenses.

I have been to see my father again this evening and he did not know who I was at first and later on when he seemed to remember, thought we were at home and there were all these people milling about. I am quite convinced that by the time he finally gets home he will not know who I am or that he is at home, and once again this same hospital will be responsible for a sudden and irreversible degradation of his remaining mental acuity. He is on a medical ward where I dare say the staff do not have much training in mental health matters, he has no mental stimulation (TV etc), only watching the ward's activities, and they do not attend to his personal care (shaving, brushing of teeth etc). They had originally ignored my concerns about the need to give him nutritional supplements to compensate for his low appetite, as I have been doing, and instead experimented with food stuffs, repeating all I had, before finally starting to give him Fortisip drinks.

Is there any way I can get my father out of this damned hospital?

 

[24fan]

Oh how I hate interfering but not remotely helpful Social Services!

Have a look at this thread - I was in much the same situation a little while ago and just as frantic to get my father home. Hope this helps.

 

[nitram]

Have you tried contacting PALS
http://www.pals.nhs.uk/
and airing your concerns?

 

[bunnies]

I
Is there any way I can get my father out of this damned hospital?

What's to stop you just arranging to bring him home?

 

[tre]

I had a problem getting my husband out after a hip OP following a fall. All the otheres were going home and we expected to go home on a Thursday- they had said SS had to see him first on Tuesday. We had been waiting and I got a number for the hospital social worker but it was never picked up despite many tries. Eventually one of the OT staff managed to contact him and we were told to expect to wait another week. All the time he was in hospital he was getting more and more distressed and disorientated. On the Friday morning I went to the PALS desk at the hospital. The social worker saw us that evening and we were actually discharged the following Monday. Over the weekend I had to stand my ground with a different sister who said they needed the bed and wanted to move my husband to ReHab. It had already been agreed with the team that he would not go to Re-Hab as a further move would increase his confusion. So from my experience definitely enlist PALS to help. I was about to start digging a tunnel.
Tre
PS Once back home my husband was much improved.

 

[rosaliesal]

Hospital care.............................................. .......................

Reading your sad message, I thought here is someone going out of her mind with worry about the care of her father. This is someone who really cares. However, having recently been through all of this I wish to help. You are fighting to save the life of your father, you are trying to fend off all those who in your eyes are failing him. This is protective and is admirable. However, reading between the lines your father's health is declining mentally. When panic sets in it a frantic situation and it is hard to be calm. If your father came home do you think he will improve and start to get back what you dearly wish for. It could be that the staff recognize that it is a downhill situation and do not want to worry you with the details.Even if physically recovered his mental state may be worse. Perhaps , trying to be kind can the best thing for someone who just can not cope with bad information. However, some of us prefer to know the truth in order to cope. The hospital staff do not know how you will react because they do not know you. I felt we had the very very best of the hospital service on the N.H.S. when my mother entered hospital at the beginning of this year. I told them I knew in my heart she was dying. One of the hospital staff told me "we have treated your mother so she is ready to go home now". I replied "my mother is dying". She replied "she is not dying at the moment and she wants to go home". I complained to the senior consultant and told him straight that |I knew what I was seeing...the death of my mother. He apologised and agreed to let her stay....two days later she died. I tried to get my head around this and decided that when they see someone who they can save but need a bed then they try to send someone home to make that lifesaving space. All of my anger and frustration and care could not save my mum. I wrote to every section afterwards to thank them because they truly did care and kept her well attended clean and comfortable but like me knew what was really happening. They have seen it all before. Our anger comes from the pain we feel seeing someone we love in this terrible state. The staff have a terrible job, one I do not envy, trying to placate relatives, not upset them, and dealing with this type of problem over and over again. I forgive the woman who upset me when I think of what she has to deal with so often. My mother had no idea of what was going on. Now I can appreciate just how much the hospital tried to help. I guess that one woman was anxious for the bed.

What a person with Alzheimers can do one day, can become a problem the next. Because you have coped so long and want to keep on doing so you may not be standing back from this and recognizing just where you have arrived. There comes a time when it is necessary to admit that although you care and love and want to do this to the end, sometimes you just can not. It is not your fault. If you need help, accept any you can get because the final stages are so difficult. It is part of the illness, I guess, that the appetite gets less. It is part of the run down. My mother started eating less for around 6 months, then for 6 months she would not eat at all. I was giving her drinks frequently made with milk to try to get something worthwhile into her. Yet in my heart I knew it was the beginning of the end. The hospital knows that this is part of the process and will probably know why he has little iron. Not eating enough is part of that problem I guess. My mother's problems have now ended but the ward will continue to have dementia patients getting out of bed, trying to leave the ward to visit imaginary places and strolling up and down the ward asking for details to railway stations or worrying when their son will visit. My husband and |I sat by my mother's bedside for two weeks day and night watching the staff trying to do their jobs with all of this going on around them daily. They responded with kindness despite their busy duties and we agreed we just would not want to do this job daily. I had felt that I was doing all of the care alone and that no one cared except me, nor noticed. I was in a world of my own. the reality was that I held on to the last with the same protective attitude as you until I was exhausted. I do truly send my love and deep sincere wishes that you find your way and your self through out this and wish you happiness in the future.

I have been a sole carer for my elderly father in our shared home for the last 2.5 years. He has Alzheimer's/dementia, early stage cancer (but has been asymptomatic for over 2 years.) He has, during the past 6 months, become bedridden and his appetite is waning. Until now I have called out health professionals, community nursing staff, district nursing staff and GPs when needed but I have otherwise coped. I have Carer Vouchers for use when needed. I have cared for both my parents with cancer, my father with dementia, for 6 out of the past 11 years. I have not come up against the following problem before and would value someone's advice.

He recently became anaemic only a month after coming off iron pills and a GP suggested he should be admitted to hospital, leaving the decision to me as he explained he may need to go in again and again for the same thing, when it may be a palliative care situation, and I had expressed my concerns about the hospital keeping my father in longer than necessary until his dementia went haywire. The reason for my concern was what happened after a previous hospital stay, when he had been transferred around wards for 10 days due to them cancelling 3 gastroscopies. It had been his longest break away from home since 1987, and a length of time so disorienting that when he came home he no longer remembered where we kept things or even which bedroom was his. He had returned home a different person and has never been the same since. Older people rely on routine, familiar surroundings and faces, and if something breaks that they become highly disoriented.

He was admitted for a blood transfusion a week ago, which was done and dusted in 2 days. They have done nothing else for him, not even investigating how he came to be so low in iron a month after coming off the pills, or to determine if cancer really is causing his shortfall in appetite (there are no other supporting symptoms). The ward has not been forthcoming with information, and even snappy and abrupt when I rang to ask, and it has taken an enormous amount of effort to contact an appointed social worker (2 days of phoning and leaving messages) to find out by another avenue - that they are ready to discharge and regard him as medically fit but have completed something called a CHC Checklist, which means there needs to be a meeting with a District Nursing Liaison person, but this cannot be for another week.

So my father has to remain in hospital for a total of at least a fortnight, possibly longer if they need to wait for any decisions and planning to be implemented before discharge. They are talking about holding a meeting on the ward when they're concerning themselves with a discharge to his home, wouldn't it be better for them to attend his home instead? The basis of this does not seem to be for the patient's well-being, although that is how it's presented, but in order for the various NHS departments to decide who will pay for his future health care so they have the funding. I could imagine scenarios where by the time they have sorted this out an inpatient, perhaps someone terminally ill whose wish was to die at home, will have expired on the ward, thus saving them all their future continuing home care expenses.

I have been to see my father again this evening and he did not know who I was at first and later on when he seemed to remember, thought we were at home and there were all these people milling about. I am quite convinced that by the time he finally gets home he will not know who I am or that he is at home, and once again this same hospital will be responsible for a sudden and irreversible degradation of his remaining mental acuity. He is on a medical ward where I dare say the staff do not have much training in mental health matters, he has no mental stimulation (TV etc), only watching the ward's activities, and they do not attend to his personal care (shaving, brushing of teeth etc). They had originally ignored my concerns about the need to give him nutritional supplements to compensate for his low appetite, as I have been doing, and instead experimented with food stuffs, repeating all I had, before finally starting to give him Fortisip drinks.

Is there any way I can get my father out of this damned hospital?

 

[Clementine]

We were very much in the same situation with our Mum a year ago.
She was admitted to hospital after a fall. She was kept there for three weeks with no stimulation whatsoever, in fact she was getting worse every day, i.e. she became incontinent, could hardly walk and started to undress. The nursing staff, while kind, could not cope with her, she had several falls in hospital (she was not the only one, there were several elderly people wandering around with bruises).
We just wanted to get her out, this was postponed all the time. In the end we wrote a strong letter to the doctor in charge and this resulted in getting her out. The Nursing Home she is in now provides plenty of stimulation, but she never regained her agility.

 

[outernational]

Thank you for the replies everyone. I've telephoned MIND and the local Alzheimer's Society today. Am due to speak to the Memory Clinic nurse tomorrow, the same one who did the home visits, hoping she may be able to suggest something, maybe have a word with the psychiatrist who formally diagnosed my father's AD/dementia at home, to see if he could intervene, especially as he cannot have medication for his Alzheimer's (it is particularly contra-indicative for the stomach cancer, which has been symptom-free). The local branch of the Alzheimer's Society apparently have someone attached to one of the wards who was going to phone me, but I haven't heard from her as yet. My instinct is to try and go the route of protecting his mental health and use the mental nursing side to countermand/speed along the medical side, especially when they have determined he is "medically fit to discharge".

I tried getting the District Nurse Liaison meeting date pulled forward but was told a simple 'no', just as a plea to discharge him due to his mental state and worry over what happened before happening again was met with a sympathetic "we can't". They are obviously intending to discharge him home, back into to my care, because the liaison and occupational therapy have asked about extra equipment, and are arranging an electric hospital bed at home (until now he's only had a pressure mattress for 2 years). The Liaison seems to have arranged the meeting with the social worker first and then offered the time to me, and given how hard it's been for me to contact the social worker I should imagine that will be the earliest date the social worker is available.

I don't think I can simply go with my father's wheelchair and discharge him because I do not have a lasting Power Of Attorney, he cannot state he wants to leave, and the ward doctors/nurses have exercised 'capacity' over him and decided things. I'm not sure what the legal situation would be there, it could even be that the social worker or ward would get the police involved, who would surely listen to them more than me, and should I make it home, an ambulance would probably be sent to re-admit him. It's a grey area. There seems to be a regular element of bolshiness, or power in people like ward sisters, social workers et al, which I have come across many times before, so I'm sure they would not take kindly to what may be seen as my 'insubordination'.

Indeed, from what I gather, this meeting will really only have me there as a witness and information provider because my father cannot supply background information. Everything will be decided by the social worker, the ward sister, and the District Nurse Liaison, in a sort of battle between social services wanting the NHS to pay for everything (and being keen to railroad as big a home care package as they can, 'just in case') and the NHS wanting to strip it down and being keen to help me continue so they can reduce their budget. None of these people know my father or have any emotional connection, he is just a performance number, and their only reference point is what they have encountered on the ward during a matter of days, since they have never voluntarily communicated with me, or involved me in their decision process so far. I personally do not want or currently need an eloborate care package of people coming to my home each day, because I know I can continue to cope, in fact I'd say things have got a lot easier since he became bedridden and he is at less risk of falls. I have preferred to arrange it when needed, which is why, since 6th March I've been chasing up a new issue of carer vouchers (previous ones expired on 31st), which I will be lucky to get now, after printing and posting, come the end of May.

They could make this decision about aftercare and funding just as easily once he has been discharged and visit the home to better assess care needs rather than have me describe the home at a meeting held on a hospital ward. He could now be back home watching the world snooker each day - his dementia means he does not follow the plot of old movies the same, but he likes certain sports, and they don't require high concentration and can be picked up from any point, if say he nodded off for a bit. The district nursing team have already been coming out to do a Waterlow score each month and had already initiated a bed sore care plan just before he went into hospital (each time he's had anaemia he's had a pressure sore) so they are on standby ready for me to phone them to resume twice weekly visits. So a lot of things were already in place without this delayed discharge plan.

What a diabolical situation! IMO the decision process for discharge once medically fit should be between the next or kin/carer, or the "nearest relative" as classed by the Mental health Act 1983, and the patient's GP; those who know the patient well and over a period of time, not a mere few days on a ward when a CHC Checklist is completed by a charge nurse (who has not communicated with me, other than to be extremely rude and abrupt when I phoned her). Part of the information they use when completing the CHC checklist may be ambiguous, for example increased confusion brought about through anaemia and being in an unfamiliar place, or in other cases, a patient's drug reaction or reaction to some other hospital procedure. There is also a 'domain' in the checklist about the patient being aggressive, and when I went in to see him before this CHC was done I had arrived just as the "I want to have a word with you" Head Mistress ward sister and a nurse had a tight grip of his elbow and forearm while trying to attach a blood line and because they were not reassuring him, or even communicating at all beyond a rebukeful 'keep still!', he was at the point of my arrival struggling, bringing his other arm across as if to push at them, and telling them to 'get off me you ******s'.

His forearms have been very painful, they bruise easily, I have to be careful even pulling the fabric of his pyjamas sleeves across them when changing him, and I had managed to get what he had to almost fade away by rubbing Conotrane cream in, like I have been doing with any other areas of reddened skin to prevent pressure sores or blisters since he became bedridden. Now, in the ward, his arms are so covered in red blood bruising, all new from the past 7 days, that he reminded me of someone with heavily tattooed forearms. So they may have recorded him as potentially violent and "a risk to himself and those caring for him", which ups that particular CHC domain to an 'A', increasing the whole score and helping trigger this meeting. But if they had spoken to me I could have confirmed that he has never been like that at home, it is not his usual nature, just a natural response anyone would make to pain if someone grabbed at them, a self-defence mechanism.

I think ultimately there's not going to be much I can do except visit, and hope that even if he gets home and doesn't know it's home or who I am that within a week he may redevelop some awareness. Anything they want I will readily agree to just to get it over with and get him home, and from that point on, if I don't need it, I will cancel that element of any arrangement. In future, unless it's a matter of life and death, I will also resist him being admitted as much as possible, citing a decline in mental health caused twice over by the discharge procedure. Should he need another transfusion (will try and get the GP to keep him on a permanent maintenance iron dose to prevent it) I'll try and insist it is done in A&E or some sort of day care unit, and then home asap - hopefully that may bypass this CHC system through him not being admitted.

 

[bunnies]

I don't think I can simply go with my father's wheelchair and discharge him because I do not have a lasting Power Of Attorney, he cannot state he wants to leave, and the ward doctors/nurses have exercised 'capacity' over him and decided things. I'm not sure what the legal situation would be there, it could even be that the social worker or ward would get the police involved, who would surely listen to them more than me, and should I make it home, an ambulance would probably be sent to re-admit him. It's a grey area. There seems to be a regular element of bolshiness, or power in people like ward sisters, social workers et al, which I have come across many times before, so I'm sure they would not take kindly to what may be seen as my 'insubordination'. QUOTE


This sort of thing infuriates me. It seems to be all about convenience for the staff, and bureacracy, and nothing about what is best for the individual. I am not wholly clear myself, but I think this is a very grey area that ward staff and social services take advantage of. I still think if your father hasn't been sectioned he cannot be forced to stay in hospital. If they wanted to take out some kind of order to force him to stay there, they would have to say why - and in your father's case, what possible reason could there be? There would be no support for such a decision, since as you say, you are expecting them to discharge him back into your care eventually anyway.

It may be not worth the aggravation in your case, of removing your father in the face of such opposition, but as a matter of principle I think we should try not to be intimidated by ward staff telling us they are in charge, when nothing has given them that authority. In the past I allowed myself to be intimidated by it for 7 weeks and looking back on it now I am ashamed I didn't stand up to them earlier. For the record, the people who I found supportive in the end were the hospital occupational therapist, and the mental health consultant - who was hardly involved, but when I insisted she visited the bedside she agreed there was no reason why my relative shouldn't come home. The others all had their own agenda, and my relative's health needs were not top of that list. When I finally got her home, she was there for another whole year before she needed more intensive care, but those two months in hospital did enormous damage.

 

[strawberrywhip]

Hi there,
I can understand your frustration.. and probably the hospital feels as frustrated! The acute beds are at a premium, and of course the most expensive in the system. I worked as a discharge liaison nurse and also found the system very slow to get complex patients discharged. The problem is that we have a duty of care to the patients, and if they are deemed as not having capacity have to ensure that all the assements are done by the various health professionals. No one will start the process until the patient has been deemed medically fit for discharge, and of course has also completed their rehabilitation.
Because of the major cuts in funding I found that everyone insisted on a rigorous assesment..so someone who has been funded by social services may well tip into health funding..and detailed assesments, and the CHC check list have to be done to determine funding..then they go to panels etc etc and await thwe result.
What we all felt was needed in the acute sector was a rehab centre to move these patients to , where this process could be completed off the acute ward, and as a step down facility ..preferably in a unit where they are used to dealing with patients with Dementia so that a proper assesment could be done with the family. Unfortunately these are few and far between so many elderly frail patients with Dementia end up on acute medical wards, being care for alongside very sick patients which is the wrong environment for them.
Co-ordinating these meetings and getting paper work done and everyone in the room at the same time can be difficult..and I was often very frustrated at how long this process took ..bad for the patients and for the relatives.
In some areas social services and the CHC team work closely together in order to facilitate discharge..and I think this is a good model..however in these days of funding cuts I think everyone is fighting their own corner unfortunately.
Hope things get resolved quicly for you....the main thing is to get your relative discharged safely to an environment where all his needs can be met.

 

[bunnies]

Strawberry Whip - thanks for giving that insight. You explain very well how staff are trying to work to provide the right outcome for the patient, and I am sure there are many people like you working in the system who do care about the patients... The problem here, though, is that there is no reason why the patient has to wait in hospital while all these checks are done - it is for the convenience of the staff, not the patient. In the case of many elderly patients without azlheimers, staying in hospital another week or so is a minor inconvenience, but in the case of patients with alzheimers it can be a major trauma.