Elderly and vulnerable mum is in hospital, not getting answers, what can I do?

[ApriltoNovember]

The last few days have been very stressful.

Mum is almost 83, 8 years into an Alzheimer's diagnosis, frail from osteoporosis, heart disease and breast cancer. She can not communicate well and struggles with her words and doesn't really understand what people are saying to her. She can feed and drink for herself but only with special adaptations (ie beakers with handles etc) and with assistance.

Mum appeared unwell last Thursday, she felt warm and was unusually sleepy (more than usual). On Friday I called the GP surgery, the nurse called me back and diagnosed a UTI over the phone. She prescribed antibiotics which I gave to mum. However, on Saturday the carers were worried that mum was still quite hot and noticed one of her knees appeared to be swollen. I called 111 who then called for an ambulance. The paramedic was concerned mum may have a blood clot (mum suffered a blood clot 2 years ago from her Tamoxifen medication), so off to A&E we went.

A&E doctor quickly dismissed the blot clot but still ordered a scan and said he thought it may be septic arthritis. Twenty six hours later laying on a hospital trolley in the corridor mum was finally given a bed on a frailty unit. This was late Sunday evening.

I went again to see her on Monday and she seemed a lot brighter but to say to me that she was very frightened and scared then started to cry. This was so upsetting as it's the most she has spoke for a while so must have taken such an effort to say and it simply broke my heart.

I noticed there was nothing written on the white board above her bed and there was a stone cold mug of tea on her table. I told the catering guy that mum has advanced dementia and could not drink for herself, he said he had no idea as no one had told him and got me a beaker for mum.

The unit mum was on was a very large mixed ward with 22 beds, all full and with just 2 nurses on the whole time I was there (hours). It was very difficult to track anyone down as they were always dealing with someone else. I finally found a nurse for an update to be told little had been done. Mum still hadn't had the ultrasound doppler scan on her knee. An aspirate had been taken from her knee but that was in A&E as I was with her then (no bedside manner from that doctor, poor mum screamed her head off and he said nothing to her to ease her distress).

I got home Monday and managed to telephone a doctor from that unit who basically told me that she didn't feel there was much wrong with mum, it probably WAS simply down to a uti and due to her dementia it would be wise that mum is only ever admitted to hospital under very exceptional circumstances which I have always been in agreement with (my dad has a different opinion and I am always clashing with him over mum's care). This doctor told me mum could be discharged the next day (yesterday).

I rang the unit yesterday morning to be told mum was not good. I asked why and the nurse said mum was very drowsy and they couldn't get her round, blood tests revealed she is very dehydrated. I said it is no wonder because mum has not been given enough fluids and she can not drink for herself (when there I am giving her cartons of drink with a straw which is much easier for her). Been told a straw is a chocking risk so they won't give her one (would rather she became dehydrated instead) explained that every time I speak to someone they are always new and have no idea mum is in the late stages of Alzheimer's, I asked why there is no info on the whiteboard only to be told it's because the whiteboard pens go missing!

Later the doctor rang to say she was disappointed mum has taken a turn for the worse and she now has bad diarrhoea and is being tested for C Diff, I am hoping and praying my poor mum does not have this as I think it will finish her off. Unfortunately I could not get to the hospital yesterday, my sister was away for the weekend but came back early so she could go to mum and said she slept the whole time. She spoke to a nurse regarding the suspected C diff and they knew nothing about it!

I then received a phone call at 5pm yesterday to tell me mum is too unwell to stay on the frailty unit as it is a ward for people about to be discharged and she will now be place in another ward. From 7pm until 9pm I rang this ward and no one answered, eventually I managed to speak to someone who told me all the nurses on this ward are in a meeting and I needed to call back at 11pm. I called back only for there to be no answer again. I am just about to call back again (thought I would leave it due to breakfast time) but I am in pieces worrying about my poor vulnerable mum.

What can I do? Who can I ask for and what shall I ask? I am quite a passive person and don't like to make a fuss but I want answers, what do I ask for? Can someone please advise me?

I am so worried mum will die in that awful hospital. Last year she fell and fractured her neck, she spent 4 weeks in there, went in fully continent and walking and was double incontinent and bedbound by the time she was discharged, it has taken us 8 months to get her better, (I don't have faith in this hospital as I know too many people who have been neglected there, it was in special measures for years and now has a 'requires improvement' status)

This is very difficult and as others have said, elderly people need an advocate every step of the way. My dad was in a rehab hospital last year and it was just awful. The staff were mostly HCAs (judging by uniforms) but didn’t seem to be overly interested in the patients.

One day I couldn’t get there and dad was left in bed all day (despite ringing buzzer repeatedly) in his PJs and an unchanged pad. When I got there the next day, I was polite but firm but made it clear I would be advocating for him all the way. I realise of course the NHS is under pressure but leaving patients stranded in bed in dirty clothes isn’t an acceptable level of care. In the end, dad self-discharged and although after another recent admission they wanted to transfer him back to the rehab hospital, we said no. That place is not fit for purpose.

Do you have health and welfare LPA for your mum? You should absolutely talk to PALS. My approach is to always be nice but remind them she’s a vulnerable adult and it’s a safeguarding issue if she is being neglected or not cared for properly. I hope you’re able to get some answers soon.

Late to this thread, so what I have to say may already have been covered. My Dad died in Colchester Hospital 8 years ago - the lovely young doctor on duty was so distraught at the care he had received she reported her concerns and there was an enquiry where they admitted fault. When my mother became unwell a couple of years later, she flatly refused to go into hospital. We managed to keep her at home with round the clock carers ( Drury Health Care, can recommend). Towards the end we had a lot of support from Single Point, who work with St Helena Hospice and other services to provide end of life care in the home. 01206 890360 - worth calling them for advice, I found them so caring and understanding.
i really hope you get your Mum home or to appropriate care very soon.

Thank you so much for that, it's very helpful x

It’s a terrifying state of affairs the NHS does not treat people with other care or compassion.

The level of recruitment must be at rock bottom and the standard so low in nursing as they simply do not care from first hand experience. Animals are treated better at the vets than humans at the mercy of the NHS.

It is cruel and negligent in the extreme.

As one other person posted upthread that they are single and childless. I’m in similar circumstances and I’d off myself than be left at the mercy of what I’ve seen…it’s beyond terrifying to get old and alone in this country.

I had to go to hospital this week and no one was speaking English which is intimidating when you are already vulnerable. The nurses were all African or Chinese and talking amongst themselves. Then an interpreter arrived for for an Indian patient that spoke no English.

What a broken state the NHS is in.

I had LPA for finances and H&W for my OH. It was invaluable at the point where they were about to bluelight him from nursing home to hospital with what they thought was an infection. He was drowsy and barely responsive. I pointed out to them that I had this LPA and he had no quality of life at all (non-mobile, confused and terrified - he thought everyone was trying to kill him) and that all efforts to improve this had failed. I asked them why we might want to drag him back from death's door to this pitiful and frightening existence, and said that I wanted him to remain in the nursing home where everything was familiar and where we could all be with him in a peaceful and gentle environment. No-one quibbled it for a moment and simply set about ordering the end of life pack of meds etc. to make him comfortable. It was almost as though they needed permission to do what they knew was the right thing.

My DDs (who were also named on the PofA) all backed me up.

So an LPA is a good thing - if you have not sorted one for you or your loved ones yet then it is definitely worth considering.

@ApriltoNovember I agree with this. An immediate email to the Hospital Chief Exec, followed up by a phone call. I would emphasise the most ridiculous thing you’ve been told ie the whiteboard markers, by way of example of how poor communication is endangering your mother. Tell them you are going to involve your MP and the local press.
Sadly, it really is the case that vulnerable patients need a relative to advocate for them in hospital pretty much around the clock. I know it isn’t always possible though.

It's truly terrifying. I'm urging my DC to leave this country if at all possible. Without a decent healthcare system most of us are f"*ked in old age.

And it starts at ground level, my mum would probably have been able to have avoided going into hospital last weekend if someone from her GP surgery had come out to see her rather than diagnosing over the phone. Such a sad state of affairs.

As soon as mum was diagnosed with Alzheimer's 8 years ago I insisted we all got full POA's, my dad (not the easiest of characters) was against it at first but it proves invaluable especially as both my sister and dad have a tendency to clam up in times of stress so it's always down to me to do the fighting.

It is terrifying!

My mum has a lot if ailments and it’s been going on for well over a year there is no joined up thinking and no answers. She is now totally housebound, has zero quality of life, can’t do anything other than lie on the couch and in huge pain and doped to the eyeballs on about 16 different medications.

Animals would be shown better care.

She worked all her life and paid her taxes and she has been abandoned they simply don’t give a flying fxxx!!

I could write a book.
If I was younger I’d be leaving the U.K. it is so sad and dangerous what so going on with the health system.

GP’s not seeing people is another big issue….they want to do phone consultations that doesn’t work.

Good luck OP.

If you have time, try to write out a detailed timeline of everything that has happened and everyone you spoke to. You could make a voice recording and use an AI tool to transcribe it if that helps. My experience is that people in authority sit up and take more notice when they see you are taking contemporaneous notes for future evidence of their incompetence and mismanagement.

Go everywhere with a decent notebook and pen, take a "Kicking ass and taking names" approach.

All best wishes to your poor mum.

@disappearingfish thank you for this excellent advice . I will remember to go armed with a pen and note book and take all names and put in a day to day diary entry at every stage if I find myself in a hospital again with my DM. It so hard to remember who said what and when especially when going through a particularly stressful time high on adrenaline worried about them and also the care they get.

@ApriltoNovember you are a great daughter and doing well and remember to also look after yourself as much as you can.

@disappearingfishis giving very good advice. We wrote down every word with my Dad. As she says the ChatGPT app is amazing… you can just read out your notes and get a sensible summary you can cut and paste into WhatsApp or whatever to update your sister.

My Dad was 100% lucid and asked me lots of questions about what was said and when as it was so much for him to take it. The notes were so helpful to refer back to.

Another child free person here. Having seen my parents and an aunt slow down significantly between 75 and 80 and then get dementia I aim to mastermind my own demise with sleeping pills - which I will have to obtain by deceit from the GP - at about 80. Assuming I remain healthy till then of course.

No way would I want to go through the health issues my parents have experienced in old age without a ‘Choux’ to advocate for me.

I use a 4 ink pen

Green is an open action point (under line if I dont swap inks)

Red is something i want to jump off the page

Black/blue are used to highlight if 2 or more people are talking

She's deteriorated today. She has been asleep the whole time I've been here and I can not get any drink in her at all. Have asked for a nurse to come and advise me how much drink/food/fluids they have managed to get in her so far today, still waiting.

Did manage to speak to a doctor just now who agreed there is no real reason to keep mum here and she can be discharged to a care home (completely different conversation to the one I had with the other doctor yesterday!). Dad has spoken to the care home manager who will come into the ward tomorrow to do an assessment.

The daughter of the lady next door is trying to get her mum discharged and into a home too, nightmare situations.

I just hope it's not too late to get mum out looking at how she seems today 🤞

Try hospices too
We were very lucky our GP sourced one for my mum when she was stuck in a hospital bed

Something else to also watch out for is development of bed sores/pressure sores - this needs (1) regularly turning/movement; (2) application of barrier cream at the first sign of redness and (3) an appropriate mattress for a high risk patient.

I was in a situation where I had been primarily responsible for the care of my relative at home and had received by watching and learning a lot of information. they had never had a bed sore. Within 3 days of being in hospital they started to develop a red patch which I spotted straight away (none of the nurses or health care assistants noticed or were even checking) and then took over care with my caring team, applying barrier cream which I brought in from home and making sure they were turned/moved regularly and got the matress changed to an air mattress. It was all fine but if I'd not been there someone who had never had a pressure sore would have developed one very quickly

Again this is a staffing issue - many hopsitals will have a ward white board that states number of nurses there should be and the number on duty that day. Check it out - because if they are down which in my experience was 100% of the time - they won't be able to provide adequate care which means making sure bed bound patients are turned regularly.

Elderly skin is fragile and so it is CRUCIAL to avoid a bed sore in the first place which is much easier than treating it when the skin has broken down. If you have a person at high risk of pressure sores they should be on a bed with a pressure relieving mattress that is appropriate for their risk- air flow or lateral rotation.

Watch out for this because not all beds on a fraility ward will necessarily have the right kind of mattress. You may need to ask for which read may need to push hard for one. It should be dealt with automatically but in this broken down NHS you maybe unlucky and if no one is paying attention, it is up to the relatives.

Once you have skin breakdown you have a whole host of other problems - infection, pain etc. Look out for reddened skin esp on the back and bottom when they are being turned or washed.

@ApriltoNovember I'm so sorry you and your mother are going through this. I've been there and being in that situation with a parent you love ranks as one of the worse life experiences anyone will ever have. I hope your mother is kept comfortable and things go as you would wish.

My heart hurts for you as I know how painful it is and you should know that there is a stranger out there in the internet wilds wishing I could send you a rescue cavalry.

If she is expected to die within 2 weeks you could ask about a hospice and/ or ring the local ones. It does sound as though she may sadly pass away and a hospice is the best place for a good death (IMHO)

I hope today went ok.

Thank you for starting this thread as there has been lots of great advice from posters which will help me and others in your situation.

Wishing you and your mum all the best.

@ApriltoNovember thinking of you all 💐

What a week.

I spoke to another doctor today who agrees mum needs to be discharged and the treatment she is currently receiving can be administered in a care home setting so we have a care home manager going in to do an assessment tomorrow. I am hoping they will take mum on and she can rest well in her own room with familiar things from home and her own comforts. Peace and quiet is what she needs right now.

We have no idea what the immediate future holds but I am absolutely certain she will die if left in the hospital. Today, again she was slumped in the bed and deeply sleeping when I arrived, after an hour or so of trying to awake her I managed to get a pot of rice pudding and a Fortisip drink in her and within half hour she was sitting up smiling and munching on a pack of quavers, the nurse walked by and said ‘Oh lovely, junk food’…..it took all my might to bite my tongue.

So sorry you're going through this op. I had a very similar experience with my late mum. Me and siblings made multiple complaints to pals but nothing changed. Nurses didn't care and had no idea of her existing problems. There was a complete lack of communication and basic care. They didn't even accept she was clearly dying. Thankfully we did get her to a lovely nursing home in the nick of time. I hope for the same for your mum. I really feel for you. The pain of what my mum went through broke me. There was an inquest due to nhs failings. I have lost all faith in the NHS now. I have little family and when my time comes I'd rather just die at home.