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)

Sadly this is the only way. You have to actively work to get a reputation for being difficult without being abusive. I am also self employed, and know the struggle, but I would strongly advocate trying to be there for at least one ward round and asking lots of questions - it's shit to say it but if they know family are actively involved and concerned and in touch with PALS they will do better.

What an awful situation for everyone. I'm so sorry, OP. I felt that my mum had a massive step change every time she went into the hospital and came home incredibly disoriented and scared which in her case made her incredibly oppositional. In the end, I agreed a plan with the GP to keep antibiotics etc at her care home along with end of life kit, and that she would only be hospitalised if she was in a lot of pain that could not be managed in the home. But my dad died many years ago and I can see it's harder if he doesn't agree with you.

I’m really sorry this is happening to you and your mum. I’m a mental health nurse and currently working part time in liasion (working alongside the wards and a&e).

The NHS is so badly underfunded that staff shortages are accepted as normal and nursing teams are really, really struggling as a result. I regularly come home from work totally overwhelmed and I know that due to pressure of work I am not always able to provide the service I know is needed. It’s totally demoralising in frontline NHS.

i would definitely make complaints to PALS as it’s only by them receiving information on how services are lacking that the powers that be are made aware of exactly how bad things are. I think you should also complain to you/your Mums MP (ie the MP that covers the hospital. As you clearly feel strongly about it , you could also raise a Safeguarding Alert via Social Services (category of institutional neglect) or complain to the CQC.

good luck x

I don't think you should bite your tongue OP. If anyone makes stupid remarks again call them on it. Say 'Excuse me?' get them to repeat it and then ask if they thought that was helpful. Ask for their name. Write it down. Go on the offensive.

I have become a fierce advocate for myself in hospital because I've had to. But I will go even further for friends and family, like you. A good friend was in hospital for very serious treatment and I was scared for her. I visited every evening, and each time I quizzed the nurses about her medication, her pain relief, her results that day - I knew plenty about her condition which helped. But what I wanted to do was make them worried that this annoying little woman who kept asking questions would complain and make trouble for them if they didn't do a decent job of caring for my friend. It worked. She has told me since of how she valued knowing I would be there every day, checking up and asking all the questions she was too ill and tired to muster. You are being so brave and strong for your mum. Keep going - we're behind you.
💐

I feel so bad for you OP . Very distressing for you . I actually removed an elderly relative under similar circumstances. Was deteriorating rapidly and I quickly realised that he was not eating or drinking . Because he was registered blind so had no idea if food was there . When I asked if someone could help I was told he could press his bell . Well he couldn't see that either . I took him home as wanted to let him die with dignity. He lived for another five years . His underlying complaint was blood pressure problems but lack of simple care like eating and drinking were going to make him die .
No idea what anyone can do as the system nearly needs to be totally built again from scratch as it simply isn't fit for purpose. And it is not the nurses fault as I know they also feel helpless and down spirited too.

I am so sorry you had such a bad experience with your mum too. It is truly heartbreaking isn't it? It takes a big notch out of your soul. I feel wretched.

I can't understand the lack of communication all the time. The old school way was to have a clip board at the end of the patients bed with all info on, every doctor and nurse could look at that and have all the info they needed there and then. I know this would no longer fit with patient confidentiality etc but there must be a modern day way of bring something like that back.

I did complain to PALS yesterday and have now spoken to a ward nurse (funny how they suddenly appear once you have complained!). Between my sister, my dad and myself we are trying to be there as much as we can. Sadly dad could only come from yesterday as he had D&V on Sunday night (I think he caught it from A&E) and sadly now my sister has come down with it so obviously neds to stay away now. I can not be there until later this afternoon as I have teen dc and need to sort out an issue with my dd which was pre arranged.

Life with elderly unwell parents is tough when you are part of the sandwich generation but you are right you have to make a fuss in order to get heard. I worked for the NHS for years when I was younger and all of the older secretaries had a saying 'It's the squeakiest wheel which gets the oiling' and sadly that is so true and my heart breaks for the people who have no one to advocate for them.

I will ask mum's GP about antibiotics at the care home and an end of life care plan, thank you.

Thank you. You all do such a great job. I did complain to PALS yesterday and the nurse came to talk to me. I did say to her that I was not complaining about her or any of the nurses and it's the system/government I am angry at, not them. I watch them all buzzing around like bees in there and really am amazed how they keep going without breaking down, especially in wards like mum is on with such poorly and very elderly people you know are not going to get better.

Im glad someone came to talk to you OP but please dont let them off the hook. The government (current and previous ones) is responsible for the state of the NHS but it is the “care staff” on your Mums ward who are not paying attention, being kind and using common sense . That’s on them. Being incredibly busy is no excuse for treating people without compassion.
But I appreciate you have to focus on whats essential now and may not have the energy to fight every single point. I really feel for you.

Thank you. Yes it really is heartbreaking. You feel so powerless and it's an awful feeling. I agree there needs to be a way to keep basic communication between doctors and nurses at the forefront in hospital. My mum was failed because no one knew what her diagnoses were and they blatantly disagreed with each other on whether she needed oxygen. It was a complete disgrace and I'm so angry. I reslly hope your mum gets out of there into a lovely care home. Thinking of you.

Thinking of you OP and sending strength.
Although I am 💔 that you have had to start this thread I have learned so much from it which I am storing away in case of future need.
Big thanks to @IfICanHelp and others whose names I can't recall for their amazing and detailed advice.

Am I mad to hope that a journalist reads this thread and an article of written.
Or will that make things worse for those in the NHS who are decent , hard working and caring

Either a journalist or, alternatively could @MNHQ
collate the comments on these posts and mount a campaign for better treatment of the elderly in hospital?

I have shared our story a number of times and recognise many of the comments made on this thread.

oh, yes that place is awful.

experienced a similar issue with fluids. we had to be EXTREMELY forceful to get any effort. and then they said if we complain nurses won't want to give care as they're afraid of getting in trouble for making mistakes.

not giving patients any fluids all day is not a "mistake" its negligent

That's exactly why I have tried to be so careful when raising a complaint and am trying to be as nice to everyone as possible, I would hate it if they started to avoid mum even more if we make too much of a fuss. It's a horrible vicious cycle.

I remember your previous post when you were in a&e. You have my deepest sympathy. The HSE over here is no better. I had an awful time with them when mam was dying last may. I hope you can get your mam discharged.

Thank you so much. Yes, we have had a gut load of hospitals over the last few years, can't wait to get mum out.

I am so sorry for your loss

Tragically nothing on this thread is news to anyone. Everyone knows how horrific it is. People die on trollies in corridors because they've been left there for 36 hours. Corridor care is now normalised.

There is a huge problem with morale as well. Imagine you are a consciencious and caring nurse and you start a shift on a ward where there should be 10 nurses but there are only 6 of you. By the end of that shift, you will be exhausted and depressed because you will feel you will have done a shit job and let everyone down. In fact it will be true that the people on that ward have had shitty care but that's not your fault because one person has only one pair of hands and one person's time. Many jobs on a frailty/elderly ward such as pad changes, washing, turning for safety require two people under health and safety guidance - so this is a further problem. Imagine that - going home every night dispirited that no matter how hard you try, your patients will have lots of stories like the ones on this thread. What are you going to do? Stay working there or get a different job?

I agree with all you say @IfICanHelp .
I interacted with 2 nurses today when collecting friend after day surgery.
One lovely .
One not so lovely.
What can we do ?

I’m reading this thread and recognise much of what is being said about the current state of the NHS and particularly care of the elderly and confused. Present problems may well be related to low staffing and low morale, but in my experience care on wards has been shit for decades. I was a child in hospital in the 1970s, and it was terrible then. It was abysmal in the 1980s in terms of the care or lack thereof that my grandmother and mother received, dreadful in the 1990s when I had another hospital stay, and pretty poor when I gave birth to my DS 24 years ago. And on and on it goes, steadily getting worse. And that abysmal care was largely down to poor staff attitudes - not listening to or respecting patients and their relatives. Oh, and lying to patients and their relatives.

I hope you've managed to get your mum moved op x

Thanks for asking.

Mum's still in here, everything is so slow. We are hoping to get the discharge sorted tomorrow.

We have looked at a few care homes over the last few days but we don't like any of them. The only one that was lovely and ticked all the boxes was £2k per week and dad doesn't want to pay that much sadly so we have spoken with her current carers and will bring her home this week to be carers for until we find something suitable.

I'm trying to persuade dad to agree to a live in carer.

Hi OP
sorry if what I’m about to say has already been mentioned.
When you get mum home please contact her GP asap, let them know the situation. If she is not already under palliative care please get her referred, it is so important to stop a repeat of this. She needs an advance care plan (some times called a PEaCE plan). The GP or palliative care can do this with your input as you have LPoA.
sorry for all you’ve been through. It is heartbreaking to read stories like this.

It might be possible to get fast track CHC funding if her condition is deemed to be palliative. You could try asking the discharge planning team at the hospital to do this. If she was awarded that it would pay fully for care at home or in a care home. They ought to do a CHC checklist in any case to check if she is eligible.

I agree with asking the GP to do an end of life/ not for escalation care plan. In our area it is called Respect and this can be used to stipulate a preference for comfort and care at home and to refuse invasive treatments. You have a copy at home to show ambulance etc and it is kept on file at the GP and at the hospital.

I’m going to change her GP surgery over to mine, the one she currently with is useless with older care.

We have a ReSPECT form in place but I’ve not heard (or been told about) a PEaCE plan before, thank you for that, I’m off to google.

We applied for CHC last year after she fractured her neck, we were advised by the doctors in hospital that she wouldn’t live past a month with that type of fracture but we were turned down. We could try again I suppose.

My only worry having looked at a few local care homes these last few days is if she did qualify they may place her anywhere.

We do have a ReSPECT form in place, I’d not heard of the Peace plan before, not sure if they are the same thing?