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)

Its always harder if you dont know the follow up questions which need to be asked

And nursing staff wise.
On any shift at least one nurse will be directly tasked with your DMs care so keeping track of who that is may yielf better information.
Eg Nurse A will not want to be seen to take on responsibility or blame if the task was assigned to Nurse B

So quick update, we managed to speak with the doctor and asked if mum could be discharged to a care home for respite but was told no because she is not well enough for discharge.

No c diff, sepsis or blood clots but she has white shadowing on her lungs and an active infection of unknown origin, it could be from a UTI during the previous week or a chest infection. She has mild pneumonia. He has said they will keep her as comfortable as possible but he has said she may not make it. We were told this last year when she fractured her neck which was a nasty odontoid fracture which has a high mortality rate in the elderly so I suppose she had a second chance then and we may need to prepare for the worse now.

This sounds like a Sister problem. Where the hell is the ward management function?

The straw thing is really unhelpful. (I’m a SALT so I do quite often recommend not using a straw as in some cases it can make aspiration more likely, but typically I’ll only say that after an assessment. There are SALTs who are more gung ho than that and will put more of a blanket control in place. However, nurses will quite rightly push back to me if it’s the only way to get an adequate amount of fluid into someone. There are often alternatives that could at least be tried but preferably without leaving the patient dehydrated 🙄

Ask for a SALT assessment to give the nurses more guidance. It sounds as if leadership on the ward is totally lacking.

Have a look round and see what other people have got on these whiteboards - is there a dementia/confused symbol of some kind - often a flower symbol or a butterfly? Ask about that.

Thank you, I will be doing back tomorrow and will ask for a SALT assessment.

They have said they are extremely short staffed here ATM and the nurses are few and far between, the ward manager is apparently off sick too.

I've looked and there is no information on any of the other patients whiteboards but then again they are all able to talk for themselves and are quite vocal. One lady is currently telling a nurse she has been in the same incontinence pad all day and it's wet through to the bed, poor lady.

I have just come back to feed mum her dinner -chicken pie, mash and veg just sitting there and half a small tub of ice cream half eaten so someone had quickly tried to get something in her.

I would love to be able to get mum out of here but it seems unlikely.

You might have to push to get her out of there

And do get her out of there. This is the NHS now. Don't ask me how I know.

Would your father be looking after her at home?

I presume you're paying for a care home place? They have waiting lists. Carer is at home would be better if you could get them.

Bottom line is she'd be better off at home.

The thing about not using a straw is new to me. Hopefully someone else will have some suggestions.

I think it's probably one of those rules that has been put in by someone who has no idea.

Are they giving her any IV antibiotics or anything for the pneumonia?

If she has a respect form and DNR, IV antibiotics might not be what she wants

My mum went into hospital with pneumonia and Alzheimer’s but they knew she wasn’t to have any antibiotics

@marshmallowfluffster oh yes of course, how did I miss that?! Sorry

That makes me wonder even more what they can actually do for her. At this point, I think she's just deeply uncomfortable and neglected. PALS in the local hospital here doesn't do anything.

Basically you need to contact the ward clerk first (they know everything) and ask for: Matron’s of the ward’s name and extension number & your Mum’s Consultant’s name. Then phone the Matron to complain etc regarding nursing care. Then Phone the hospital switchboard and ask to speak to the named Consultant’s secretary to make an appointment to discuss medical care.

The problem is most likely a reduced template of staff due to sickness (with all the flu, covid, & d&v etc going around) to provide care. Which makes those left stressed & burnt out unfortunately. And some wards don’t have the right culture of care.

You are doing the right thing by keeping advocating for your mum; try to be there as much as you can (which is hard when you work i know).

One thing might be that records are usually electronic these days so the ‘white board’ that people are actually looking at is an app on a laptop or phone so it’s possible that’s where the flags need to be and not written on a white board which in fat no one will be looking at. Just a thought.

I would agree that I would try to get her out and never let her in again. If they aren’t treating her and they think she might die anyway then why should she not go home to her family where at least she would be less distressed? What are they actually doing for her in there? An acute hospital is rarely ever a good place for a frail person with advanced dementia.

Emerald roulette We really want her out of there asap, it really is not the best place for her to be. Dad is exhausted and wants mum placed in a care home now, I'm actually very worried about his health, he's 84 and hasn't been good since Sunday with d&v, he's better now but not right.

I have spoken to two care homes today who says they would take mum as an after hospital respite resident but that was before I got the update from the doctor today so I will need to contact them in the morning to see if they would still take her. One did say they would come to the hospital to assess her.

The straw issue was new to me too, when mum was in last year they used straws all the time.

The are given mum fluids, oral antibiotics and she has pain relief patches.

Lararoft it was the ward clerk who I spoke to, he was not at all helpful. He told me there is no matron and the ward manager is off sick (it does appear half the staff are off and there is also active covid cases on the ward). I do have the name of the consultant so will call the secretary tomorrow morning. I will go tomorrow morning and lunch, dad will cover dinner and my sister will go in the evening.

There seems to be no continuity, every person I see is new on and I have to tell them everything all over again.

I truly believe they are doing very little for her there other than leaving her in an environment which to her is scary, unfamiliar, noisy, too bright with endless people coming and going. No wonder she looks so exhausted, her poor brain must be in shut down mode.

So sorry you're dealing with this. What a sorry state parts is the NHS are in, and need fixing.

I do worry about those who have no one and are in hospital, no one to advocate for them.

Good gracious op, I am sorry for you and your mum and family. Sorry I can say nothing constructive. I’m in hospital with my own mum at the moment :(

I feel the same way. Over the last few days I have seen so many elderly and vulnerable people with no one to advocate for them. There was a lady in the A&E corridor in front of my mum, she was there the whole 24+ hours mum was there and apparently came from care home, not one person was there for her. I can’t stop thinking about that poor lady.

I’m sorry you are in hospital too. I hope all is going well

Sorry to hear there’s no matron but the next step down to speak to regards nursing would be the Clinical Leader of the Ward. The wards in our hospital have boards with photos, names and job titles at the entrance to each ward. A Clinical Leader would usually have a small office on the ward where she or he will be based so you need to speak with them ideally. Clinical Leaders usually wear dark navy uniforms.

The NHS just isn’t fit for purpose (can’t believe I’m saying that but recent experiences have proved it to be true.). The most tragic thing is that the staff seem to have given up.
My MIL was in hospital recently & while there she had a stroke. No one noticed for more than 12 hours. It was totally obvious even to someone who’s not medically trained - she lost the ability to speak & use of one side of her body, unable to eat or drink. No one cared. It’s awful & frankly dangerous to be in hospital. She always comes out worse than when she went in.
I don’t have any advice because I think the NHS is too far gone now but wanted to let you know that you’re not alone & you seem to be doing your best so please try not to feel guilty.

Thank you. I will look tomorrow and see if they have a board, if not I will find out who the clinical lead is.

I am so sorry, that is truly heartbreaking, your poor mil.

To think we once had one of the most enviable health services in the world and it’s now famous for being unfit for purpose. It terrifies me what state it will be like when we get to old age.

I had to sit with my mum from 8.00AM until kicking out time at 9.00 feeding and giving drinks, if I hadn't she wouldn't be alive - she had already gone into AKI from dehydration.

Do you have LPA for health, if you do, you can insist on being informed at every turn - but you have to take the time off work and literally watch everything like a hawk.

Over 75 they don't care, its as simple as that, I've had doctors admit to me that its not worth the effort, particularly with frail and mentally compromised patients.

Agree with this
They couldn’t even be bothered to test and diagnose my aunt despite her massive loss of weight

They are abandoning people who aren’t in the working age group
That's against the law!!!!!

Isn’t it simply dreadful that we have to do this in order to keep our loved ones alive.

We do all have LPA (health and finance), luckily I only work part time but I am self employed so can’t take much time off from my actual working hours.