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)

Usually they cannot wait to discharge patients so I would be asking what is keeping her in hospital? You say she’s on oral antibiotics which she can continue outside of an acute setting, is she having anything via an iv line? Fluids maybe?
Are they waiting for the results of the aspirate? Could this be followed up as an outpatient?
You say the drs said she may not make it? She could be fast tracked out of hospital to a nursing home for end of life care if this is the case.
Hopefully your email to PALS will give you done answers.
If there is no ward manager then someone else will be in charge, surprised to hear there’s no matron - not sure I actually believe that. May the ward clerk didn’t want to bother the matron with a relatives concerns. But there absolutely will be someone in charge, if not a matron then head of nursing.
so sorry you are going through this, it sounds awful.

What, if anything can I do if they have placed a DoLS, will mum be legal ‘stuck’ in hospital. I know very little about DoLS.

You have to consent to DOLS if you have POA. Unlikely they’ll try it and it’s not fast - you can stop it.

In effect, yes, but as she has not got capacity and you have LPA, as her proxy they should, by law, involve you in all discussions involved in applying the DoLs - so you can go to the trust (PALs are crap, just go to the trust chairs PA, it gets results, they may well revise the decision or re-visit it.

Mum’s having the IV fluids due to the dehydration but they gave me the impression this was a one off 7 hour drip.

The knee fluid aspirate is yet to come back but the orthopaedic consultant in a&e who did this didn’t think there was an infection and the doctor today agreed.

If mum is towards the end of her life I am so very eager to get her into a nursing or care home for that end of life care, it has to be better than on a busy hospital ward, surely?

Im certain there must be a matron, there was one in the are last year and a nurse in charge. The ward clerk kind of laughed at me when I asked, I will enquire more tomorrow.

That's a full DOLS, they have an instant temporary arrangement that can be applied by a doctor in hospital, it only lasts 7 dats and has to be constantly reviewed.

Thank you, I will note that.

Can you contact their dementia nurse:
https://www.esneft.nhs.uk/service/dementia/

And palliative care:
https://www.esneft.nhs.uk/service/palliative-care/

Hospice may be an option if you want to avoid dying in hospital and home isn't workable.

@xyzee I had to ask for quite basic things to be done on palliative care with dad - I understand and I really feel for you

Personally, I felt they were doing experiments on him with some of the treatments they did but unfortunately, he consented. He was hanging onto hope when there wasn't any. That kind of wasn't his fault because they wouldn't admit he was dying until about 24 hours before he did. We were actually better off on some of the weekend days when the doctors weren't around.

@ApriltoNovember okay so she's on a drip for hydration, which she wouldn't need if she was allowed to drink through a straw. Other than that, if it's oral antibiotics and a pain relief patch, I don't see why they need to keep her in. Mum was in a care home rather than a nursing home so I don't know what the nursing home can do, but I can imagine that a drip must be fairly basic? Presumably you talked to them about that over the phone?

I would definitely get her carers to go to the hospital if they cover that. I was with my dad as much as I possibly could be. I don't know if they still allow it, but they allowed carers to bypass normal visiting hours. So I was able to hear what doctors were saying on the rounds. That's very useful.

I've visited the trust offices several times, be confident, be polite, stroll on in and don't take no for an answer.

The people in their are frankly a bunch of pen pushing, espresso drinking, overpaid jerks - they don't want to be bothered with me, and want me to go away, so I have found generally are happy to phone the ward and tell them to do whatever I have asked for if that makes me go away so they can go back to that espresso and thumb twiddling.

It is dreadful so many receive such inadequate care, my friend had the same experience with her DH, complained etc but nothing came of it. She lives with a constant cloud over her now.

Unfortunately I've been there. This is my advice for anyone with a family member with dementia admitted to an NHS hospital based on my experiences.

1. A person with advanced dementia such as your mother who is in an NHS hospital needs one-on-one care. That means they need someone (either who knows them or who is experienced in dementia care) sitting by their bedside all day in order to make sure they eat and drink. This is because the NHS structure is now to chuck food down in front of the patient at a set time and take it away at a set time ("infection control") so if the person is asleep or not minded to eat AND can't then express thirst or hunger to ask for food or drink they will get nothing. A person with advance dementia's needs may be understood by someone who knows them well but not a stranger passing by for 2 minutes. They do not have the staff to keep going to individual patients to encourage fluid intake so it just won't happen and the person will dehydrate quickly.
2. The NHS is understaffed and cannot provide one-on-one care or even close.
3. This means if you have a loved relative in an NHS hospital with advanced dementia and you want them to leave healthy, either you or your relatives need to be with them, sit with them, manage their eating and drinking etc OR you need (if you can afford it) to pay someone to do it. If you have reliable carers who know them this is good. If you don't, and you can afford it, pay for an agency nurse or carer with dementia experience to do it (dementia experience is essential).
4. If you are doing it yourself, you are entitled to be there as "a family carer" (remember this phrase) and it is also good to know about John's Campaign as sometimes you will get nurses or staff trying to tell you visiting hours are over and you need to leave. This is incorrect. This principle is that if you are a family carer for a person who is living with dementia or cognitive impairment, you have the right to stay with the person you care for throughout the day or night on the wards and not be restricted by stated visiting hours.

https://www.bradfordhospitals.nhs.uk/patients-and-visitors/inpatients/dementia/

https://johnscampaign.org.uk/

5.If you are looking for a nursing agency to do this for you the best ones are expensive but can provide high standard carers or nurses if you need one with dementia care. The best of course is a regularly carer who knows your relative. A couple I know of here but there will be others - be warned they are not cheap.

https://www.pulsenursingathome.co.uk/Private-Clients/

https://thornbury-nursing.com/clients/

6.If you have someone who is being left alone some of the time, it's definitely worth filling in a This Is Me fact sheet and giving to the nurses AND leave a copy by their bed - but be aware there is a high chance no one will read it unless you direct them to it regularly (because of shift changes, personel on the wards change) because they just don't have time. You will need to keep drawing it to staffs attention because of shift changes.

7.If your relative has special food needs (difficulty swallowing) this should be addressed and they may need to be put on a special diet. They should be seen by the Speech & Language therapists - like this info here:
https://hospital.nhsgoldenjubilee.co.uk/application/files/3816/5641/2758/Swallowingproblemswhileinhospitalv2.pdf

8.Finally if it is just an infection, it is good to know about something called OPAT (which stands for Outpatient AntiMicrobial Therapy - basically IV antibiotics at home) because weirdly lots of GPs have never heard of it and many nurses in hospital haven't either. It can be a way of getting someone out of hospital and home faster which is a good thing. General info here but you will need to search for the one in your relevant NHS authority.

https://www.england.nhs.uk/long-read/guidance-to-integrated-care-boards-and-providers-on-developing-outpatient-parenteral-antimicrobial-therapy-opat-services/

9.Generally, hospital is the worst place for anyone elderly let alone someone with dementia becaues being bed bound without adequate staff to enable mobilisation can lead to weakness that is never recovered and become incontinence (they are left incontinence pads in bed because there aren't enough staft to monitor when patients are indicating they want to go to use the bathroom - over a short matter of days this can become a habit and the function is lost)

Good luck with it all. It's brutal and stressful especially if you are doing the caring in hospital as it is emotional and exhausting but you will need to be pushy if you want to get them home in a healthy state. Fluid and food intake is a key thing here.

Thank you so much for this.

Tbh, I was only thinking of a nursing home as opposed to a care home as I wondered if they had more medically trained staff? We’ve tried to keep mum at home for so long that I have zero experience of care homes vs nursing homes. Dad and I will pop into the first care home I chose and have a word with them tomorrow on the way to the hospital.

Thank you so much, that’s so helpful.

Agree with a lot of this. My dad who had mid stage dementia fell and broke his hip, was admitted to hospital and never came out. Died about 6 weeks later. Nobody made sure he ate or drank. He was in a single room and fell out of bed twice trying to get out of bed. He managed to pull out his catheter repeatedly. There was one senior nurse who was great and a student nurse who was amazing but the rest were not interested. Never able to speak to the same person twice. His dementia deteriorated massively during his hospital stay and he lost so much weight that his wedding ring fell off.

a friend’s father in similar circumstances is now in hospital and it’s the same story.

people who cannot advocate for themselves are just left to deteriorate.

I agree. Compassion and kindness go a long way even if systems don’t work properly as long as there is a human being who cares things can usually be sorted.
it seems that either recruitment standards are extremely low now or caring staff just get worn out and have to stop caring.

You are right, nursing homes need to have a qualified nurse available at all times, residential care homes don't.

That said, a dementia residential home may potentially be able to meet your Mum's needs, they usually have good relationships with the district nurses who can pop in and administer medications that need injection or manage a syringe driver if required (which is basically a machine that gives injections slowly over time). Lots of end of life medications (if she was at that point and needed them) are given by injection- they are often called anticipatory medications as they are prescribed before someone needs them to make sure they are on hand.

Nursing homes are usually needed where someone has more complex and unpredictable needs.

You can also look for places that are dual registered (so offer both residential and nursing, often on different floors of the same building) and they would be able to place your Mum in the bit that was most appropriate.

The hospital wards should also have a discharge coordinator, so they might be worth tracking down to say you want Mum out of hospital.

I hope you are doing OK, it's an awful situation.

I’m so sorry, it’s very frightening the amount of stories so similar to your dads, it’s an absolute disgrace and it’s just getting worse and will continue to do so.

>>Thank you so much, that’s so helpful.

@ApriltoNovember you are welcome. If there is anything I could do to help anyone - whether you or anyone else who reads my post above- in this situation I would do it in a heartbeat because I learnt all of this the hardest way possible and only because I was powered by huge love that kept me going.

I missed the link to the This Is Me Form which is here:
https://www.alzheimers.org.uk/get-support/publications-factsheets/this-is-me

but in you have a person who is very late stage it will be of less use.

OPAT (see my post above) is worth everyone knowing about though because if it applies (and it won't in any complicated cases or where there is a more complex issue) push to be referred to them, because their whole world is treating people at home and they can really help getting a person home - but the problem is few people know about it as a service. I've had GPs argue with me that IV antibiotics are not available outside hospital. OPAT will tell you differently.

The TLDR version of my post above is:

• people with dementia in hospital need either a willing relative or a paid carer/nurse with dementia experience caring for them all day because NHS staffing levels mean they will not be supervised to eat or drink properly which means they will dehydrate and probably die.
• the aim should be to get them home as soon as possible because they will weaken in bed, not be exercised, may become incontinent.
• Every NHS authority will have an OPAT service (Out Patient Anti Microbial Therapy) team which can provide IV antibiotics at home in the right case.
• Be pushy as a 'family carer' you are entitled to be there.

Thank you, I really hope I can find somewhere who will take mum in. I will fight for this until there is no fight left, I owe it to mum, I just can not leave her in that hospital. I’m not going to sleep tonight, I need to get this sorted asap.

Sorry, I meant to say mum has a This is Me form. She was on a frailty assessment unit until yesterday and the doctor there got my sister to fill it in, tbh I haven’t seen it today on the new ward. I will track it down tomorrow. Obviously no one on this new ward has bothered to look at it. I will go tomorrow with whiteboard pen, straws, list of fluids and a big wad of blue tax to stick the This is Me form up. I may as well go back on the NHS payroll as I will be doing their job for them (I worked at the same hospital for 15 years and it was a hell hole back then).

Go to pals. Write it all out as you have here. Can a family member be with her most of the time? We had this - v stressful - hope it improves

I will definitely ask about the OPAT also. I am making lots of notes tonight to take with me.