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)

Dreadful and super frightening.

Sorry to say this @ApriltoNovember but I wouldn't put too much effort into tracking down anybody. Nobody cares. I don't think it's necessarily age related either. My mum actually had to go and comfort a lady in her 30s last time she was there! Ironically that went in my favour when I said "I'm taking mum home" - the fact that she'd bust a gut to go and comfort this crying woman!

Yeah, it's pretty normal for them to come and do an assessment for the care home. One time I got her in quite quickly for respite care because there was a place available. Next time there was a wait, a place only came up because somebody died. That that's also pretty normal.

I understand that you want to protect your dad.

i'm afraid my view of the NHS is so negative now, I wouldn't be surprised if the straw thing is not just that it hasn't been thought through, but they actually want to re-introduce some kind of way of not feeding or hydrating patients? Sorry if that makes me sound like a conspiracy nutter.

I couldn't document the things I've seen over the years. I now avoid the doctor. I could actually probably do with going. I don't know what my medical record says, but I haven't got the energy to correct it. It's insane.

I was hoping to retire early. I probably will, but not as early as planned because I want to have money for basic private healthcare care. I realise if I wanted cancer treatment or something that would be impossible to pay for. But I'd like to have other stuff covered.

It's disgraceful, but try and prove it, they make no effort with feeding and hydration and of course the patient weakens, they die and "frailty of old age" goes on the certificate.

A year after mums awful 2 week experience, she fell and broke her knee - she begged me not to call the ambulance, she suffered at home and refused the doctor for 4 weeks, eventually I persuaded her to have an Xray, which showed the distal femur had shattered, but in that 4 weeks formed a Mal-union.

She then had an outpatients appointment with a lovely orthopaedic surgeon, who said she would never walk again - but that her decision probably saved her life, as he felt the geriatric ward "the killing fields" as it is known at the hospital would have meant certain death.

Reassuring...

I am truly hoping we can find a nursing home that will take mum so we can get her discharged as soon as possible.

The consultant/doctor we saw today said mum is not well enough to be discharged but can we override this? I am so out of my depth with this, my sister goes into clam up mode, my dad seems to have also gone into meltdown so it’s all on my shoulders. I will speak with some nursing homes tomorrow but has anyone actually discharged a loved one against the hospital’s advice? If mum dies in hospital I don’t know if I will ever forgive myself for at least trying to get her somewhere less scary and more comfortable even if she doesn’t live long.

You can if you have LPA, but if they get wind they will slap a DoLs on her and that means they can keep her - they may have already done this, but if you do have LPA and they did a DoLs without consulting you, they have broken the law.

The trouble with straws is that it sometimes happens that people will take much bigger mouthfuls with a straw than they do sipping from a cup. It’s also true that when you suck on a straw you are taking fluid into your mouth with an open airway. If you have someone whose swallow isn’t great, using a straw in bed or otherwise not properly upright, plus weaker or more confused than usual and in a noisy unfamiliar environment, there is a very high chance of a whole lot of fluid going straight to the chest. A bit of fluid going the wrong way occasionally may not be much of a big deal, but a lot can be. My guess would be that on this ward, where clearly conditions are in a bad way, there has been a bad incident in the past, and they’ve reacted by banning straws full stop, because they havent done a proper investigation of the causes of the incident, or more likely, that the real cause - lack of staff, lack of caring and lack of leadership - is too difficult to fix.

None of that means that you as a person who knows your mum and how to help her, should worry about using a familiar thing like a straw with her now.

We paid agency carers to do basic care - feeding, toileting, getting out of bed - for both my parents in hospital.

They’d have died otherwise.

Only got NHS staff on the phone when we refused to take their patients - who they’d both turned incontinent and immobile - home.

That got six 6️⃣ people on zoom! The staff lied madly in the meeting incidentally and sent them home anyway.

Sadly I agree with everything you say. I have zero confidence in our health system, they messed with my health and gas lit me for years before my diagnosis. My faith was lost a long time ago.

I tell my kids to start saving and take out health insurance now, there will be no NHS by the time they reach mid life.

I'm so sorry for your poor mum. I had a bilateral mastectomy 3 weeks ago and the care I received from the nurses was shocking. They would place a jug of water away from me when I was unable to lift or use my arms, watched me struggle to clamber from my recovery bed to the ward bed without help, a nurse stood and watched me as I tried to fasten my bra with trembling hands literally 2 hours after surgery without offering any assistance. I felt like an inconvenience and was just left on a corner of the ward. There was no empathy and it seems bedside manner is a thing of the past.

My experience was a real eye opener for what it's like to be alone in hospital (husband arrived late in the evening to take me home). Any vulnerable patient that can't advocate for themselves is well and truly on their own.

Interestingly enough though, when I've been in hospital with my 4 year old when he had a 3 night stay for pneumonia, the care was so much better.

Things that are helpful from relatives:

write on the board - it’s far more reflective of your family than anything the nurses can glean from notes/your mum if she’s got minimal communication.

take in your cup that your mum uses at home, it’s muscle memory and also staff know it’s the safest.

visiting - if you’re limited in how you can attend then get there 9am abs stay the morning. Far far more chance of getting medical staff on the ward round than any afternooon visiting or at weekends when it much less well staffed. Afternoons doctors are being pulled everywhere.
Ask the nurses which day is ward round (may not Be every day) and turn up for 9am as your priority.

Its much easier to update a family who are there on ward round than trying to call someone in an afternoon.

Also nominate one family member to update - so helpful for staff to communicate with a single person, much more likely to be a useful update.

and lastly look after yourself as well - you can’t run yourself ragged

I’m so sorry to hear you are having to deal with this, it brings back memories of my late DM being in hospital. The most frustrating aspect is the lack of communication and there is absolutely no pro active nursing for the patient. Everything is reactive. I echo the advice to get her out if you can. My DM went in with a uti and four weeks later was double incontinent and unable to walk where she was just left to her own devices. She later died in hospital from sepsis. I still think that had she never been admitted she would still be with us. You rarely hear anything positive about the care the elderly receive in hospital. I’m sorry I don’t have more words of confidence for you but this was our experience. Seeing my mum deteriorate in hospital over the four weeks she was in there will never leave me. Sending good wishes for a positive outcome.

@ApriltoNovember "The consultant/doctor we saw today said mum is not well enough to be discharged but can we override this"

you need to ask what is being done for her in a medical sense. They would need to answer that very extensively. What medical needs does she have and what are they actually doing for her?

If they have an answer, e.g. she's receiving hydration on a drip or medication on a drip, or that's the next step, then they've got an argument.

But I suspect what they're trying to avoid is being in trouble for letting a patient go. Unsafe discharge in other words.

When I put mum into respite care privately, they went on and on at me about how it was a problem because "she won't be in the system anymore". The system wasn't doing anything for her.

But also that turned out to be a lie, when she was home in her own home after the respite care time, we did still end up getting a visit from a physio and a couple of other things that she needed. So they weren't even telling me the truth about that. Maybe they thought they were. But I could see it was making her more ill to be in a hospital.

Hospital delusion is a real thing by the way - patients developing problems because the hospital environment upsets them so much.

So yeah, the keyword is medical or clinical - what are they doing for her medically or clinically? That's the question to ask. Otherwise, they should have no objection to her going into a care home.

I think it's easier for them if somebody stays in a hospital rather than being discharged and going back in again

All they are looking at now is how to reduce their workload. So there may be no logic to it. They might keep her in there for six weeks looking for an improvement that isn't going to happen.

I'm so sorry you are experiencing this particular vortex of crazy. Mum is really scared of going into hospital again. It was under special measures. I will check what status it is now.

before it was on special measures, they were not great with my dad either.

I will keep that in mind, thank you. I truly hope they haven’t placed a DoLS on mum.

It sounds like that could be the case, mum was given a straw with every drink last year whilst in hospital (same hospital, different ward).

Surely though if they see someone is becoming very dehydrated due to lack of fluids this rule must be overridden.

I'm so sorry. Experienced very similar, both with older relatives, and with younger ones who were not with it (not sure what the correct term is) for temporary reasons, eg infection, dehydrated, so they appeared to be like a person with dementia as in very confused, saying incorrect things, unable to help themselves and in some cases aggressive (they are lovely people usually). I tried to be involved and pushed for a dementia diagnosis where needed, and tried to get it written everywhere, but like you have found, this doesn't always work. I can only say try some of the PP's suggestions, maybe you will be luckier. Those who say the health service is fine and needs no changes really need to see what is actually going on.
Sadly there are so many people in hospital like this and they don't get the help they need. What scares me is that if it's this bad for people who have family to help, what of the ones that don't?

I think we may need to pay our regular carers to come and sit with mum if we can not get her discharged.

Please phone PALS and the hospital safeguarding team. Ask if there is a complex needs team. If you can be there as much as possible do so. I’m sorry

My goodness that is truly shocking, I am so sorry you had such a dreadful experience.

I don’t think they are thinking holistically enough to connect up ‘this patient is dehydrated’ with ‘this person is not being supported to drink they way they do at home’ and then to ‘we should consider overriding the ward policy that prevents this patient from drinking the way they do at home’ and also ‘if this person is going to drink the way they do at home, we will need to do things like sit her bolt upright for drinks, which there aren’t enough of us to do every 30 minutes’.

I will say that the frailty, complexity and dependency of a huge number of elderly patients now is enormous. I’m not trying to excuse what your mum and you are going through though.

@ApriltoNovember please ask them how they expect to get fluid into her if she's not allowed to use a straw. It's important to be direct.

I'd be amazed if the haven't, they have the facility to do a temporary DoLs in hospital, they tend to use it with patients who are incoherent for some reason.

I caught them out, mum had a UTI, they put a DoLs on her at 2.00 AM, when somehow her wrist got broken - when I asked why I had not been called (the bit of paper was still on mums bed table where she had written down my number asking them to call) I asked to see the DoLs paperwork, I saw it was signed by the Dr I spoke to at 2.00AM, however the sister helpfully told me the Dr didn't come on shift until 8.00AM

I had been left alone with the paperwork, so went to my car and locked it inside - I then had a cosy chat with the Dr who falsified the paperwork about how long they wanted to continue practicing medicine, after some worried calls to their boss, the DoLs matter evaporated and I brought mum home.

NHS care is terrifying it’s so scary.

Especially for elderly, seen it many times over.

No care or communication or compassion.

Elderly neighbour was neglected and died in hospital. I don’t trust them it’s shocking what is going on and the depths of neglect in the NHS basic things missed, miscommunications all sorts.

Which area is your hospital do you want to say OP?

They put her on a drip but that was after I had pulled them up on the fact no one was giving her fluids. I feel it’s going to always be a case of them offering up a treatment after I’ve noted something is off/untoward. I am never going to live with myself if she dies in there. Her only other treatments are antibiotics and a pain relief patch, surely these can be administered in a nursing home and possibly with a virtual ward input?

It’s a terrible hospital. My freind had to discharge her mum after she rang my freind from the hospital loo, the nurses had placed her on the loo an hour beforehand and her mum was too weak to get off, no one came to her so she rang my freind frightened, crying and begging her to take her home. I know my mum feels the same but she just can not articulate that. I asked her today if she’s had enough and she nodded.

This hospital was also in special measures and now classified as requiring improvement. The CEO has just jumped ship retired. I bet he will never have to use NHS care with his massive pay out.

Happy to say. It’s Colchester in Essex.