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)

I can get there for midday, will stay until my dad comes and I will leave about 5, dad can then feed mum her dinner and my sister can go up in the evening. The only cover we wouldn’t have would be morning until midday-ish, sadly although dad may be able to do this or I can ask one of our carers if they could help out?

I'm so sorry you're having such an awful time of it all and your poor Mum.

These sorts of things terrify me. I'm single and no kids, so will have no one to advocate for me if I end up in such a situation. I have serious plans and intentions of ending things myself before I get to that point because otherwise I'll be in such a position and that is just too awful to contemplate.

I hope you are able to rescue your Mum out ASAP x

My OH died 6 years ago ... his stay in hospital was a nightmare. He had Parkinsins and it was vital his meds were given on time. These did not coincide with the drugs rounds so my DDs and I simply had to have one of us there all day to ensure he got them.

Do not let your dad into the hospital to feed mum! ... you said earlier he has D & V. Even if it has stopped now, not enough time has elapsed for it to be safe for him to be on a hospital ward.

These did not coincide with the drugs rounds so my DDs and I simply had to have one of us there all day to ensure he got them.

Yes this can be another reason why one-on-one care is essential for a person with dementia. If they need to take medication, apart from the timing issue @Mischance mentions, you can have problems with them being asleep or unwilling to take medication at the time of the drugs round. You may need to put in effort to bond with the nurse in charge of the drugs trolley so you can get them to give it to you when your relative is awake/ receptive to taking it. And of course with shift changes you will have to do this repeatedly every day. The better ones are understanding but it can be a huge problem if you need (eg) a x 3 a day antibiotic, you can get very officious ones who are hugely inflexible and lack understanding of dementia and are all "it has to be taken at 8am and they have missed it so tough" even if you are asking at 9am so the next one could be a hour later.

I'm so sorry this is happening to you. The NHS killed my father, a strong man. A two week stay broke him. The rhetoric that nurses are angels is absolutely rubbish, and offends me. The majority of the ones I dealt with during his care, couldn't have cared less, and they lied! All the time! My dad was on his mobile phone to my brother and a nurse came in and shouted at him that his family where making a fuss! My brother heard every word! She denied it! I think a lot of the lack of caring from nurses comed from above snd the stress that they are under, but it's still shocking. And don't start me on not answering the ward phone!
You are entitled to speak with a doctor every day, find the consultants name and call their secretary and request a call back.
A year later when my mother was in hospital we were on her care. And let them know we were making notes on everything! Now is not the time to think anyone is doing the best for your loved one!
We also only had one person as a contact with the hospital and eventually got a number that was answered! We were very nice but we monitored my mother likes hawks. Sadly not everyone has someone to advocate for them.
When my father died we made lots and lots of complaints and had them running scared, but they closed ranks and lied! Trust noone in the NHS.

Mischance If he goes tomorrow afternoon he would have been clear of d&v for 96 hours. Tbh I think it has been stress more than anything, he just feels panicky and anxious now.

I would never allow my dad to go to a hospital ward if I thought it was contagious or he had only very recently been poorly.

I'm so sorry, it's such a scary and worrying time when an elderly loved one is in hospital.

I have no faith in any of the staff there and I am petrified for my poor mum.

Contact PALS and raise your concerns with the hospital, your mums needs are not being met💐

PALS is more use if you want to complain and get something done after the event or to help other people.

If your problem is action NOW on a ward to manage treatment of a patient with dementia, you need to deal with the situation on the ward - with someone there (relative or paid carer) supporting the patient to get fluid and food into them when they are receptive and addressing it repeatedly with the ward sister in charge and any consultant when you manage to get your hands on them (find out what time the ward round will be and make sure you are there).

PALS (IMO) is pointless in this situation. It's the equivalent of calling the Independent Police Complaints Commission when you've got an armed man in the house and you've called 999 and no ones turned up. What you need is a policeman right now not a complaint so you need to call 999 again and deal with it there.

That's not to say when you are out of the eye of the storm a complaint to PALs isn't worth while - it absolutely should be made but it won't help you right now in a crisis on the ward.

What the hell is wrong with you saying such a thing to OP

You can if you have LPA for H&W for sure and they cannot over ride you. Even if you don’t it would be very difficult for them to stop you. You would argue convincingly that it is not in her best interests to remain there since they are not caring for her and not providing any treatment that is of benefit to her.

I think you need to say to ask the Dr what treatment she is receiving that must be provided in hospital eg IV fluids or IV antibiotics and could she not have oral ones in a care setting. He has already admitted she may die and you are right that it would be the worst place for that to happen so why should she not be allowed out if they are doing nothing for her?

That is actually a good idea if they would agree to do it. It will help her to have someone familiar there.

There is very often a default to ‘officiously striving’ to keep people alive on acute hospital wards. Everyone is treating an acute episode that may in itself be recoverable but no-one will take a step back and have a look at the bigger picture which is that she is sadly at the end of her life from all you have said. She might survive this episode but there will be another similar one in a few months time. She is very frail and dependent and her quality of life is not good and the emphasis should be on keeping her comfortable and not having a spiral of intervention eg antibiotics that lead to c diff that lead to dehydration. That IV drip might not really be a kindness in the long term. I can see how much you love and care for your mum from your posts and the best thing for her might be to fight for people to do less treating and more basic caring which is not likely in hospital. Drs may (weirdly) need ‘permission’ from the family to stop doing invasive treatments. I hope you can get her out of there soon as I really don’t think they can actually do anything helpful.

When my mum had terminal cancer I made my dad promise not to ever call an ambulance for her without consulting me because I knew that she didn’t want to die in hospital and that it would be the default if we didn’t actively resist it and it would be shit. I am so glad that we managed to avoid an acute admission at the end of her life and I can thoroughly recommend actively planning for relatives at the end of life to stay at home.

How is she this morning @ApriltoNovember? How are you?

I know it’ll be the last thing you think of when you go to sleep and the first thing when you wake up. It’s really tough. Since my Dad died I haven’t yet had a morning where I haven’t woken up in tears but the worry about the hospital and what on earth we are going to do to help him lifted immediately which is something.

If you don’t think the Martha review is right at least write down all your concerns and email them so they are recorded.

@BunfightBettythank you for your post up thread. The trauma and the grief is too raw for me at the moment to say anything more than I wasn’t ’wildly exaggerating’ in my post where I talked about the NHS under performing on every level.

Your post is far more eloquent and I’m sorry if it is something you’ve experienced first hand.

@BunfightBetty I could have written this myself having had direct experience of exactly this after my mother approaching 80 was admitted to hospital recently. The attitude of the staff is the appalling and shocking and seems all kindness and compassion is gone- exactly what nursing should be about.

Essentially it has become more like the Victorian era, where unless it is literally life or death you should avoid hospital at all costs.

Patients who cannot advocate for themselves or who are incapable of drinking/eating/washing themselves will be left ro rot in their own shit, with just a modicum of effort shown when family are visiting.

Nurses have degrees now so are above the basic care they used to provide patients.

Just to say OP experiences of PALs obviously vary. When we went to them setting everything out in writing in black snd white it kicked everything into action within 24 hours. We were listened to, he was seen by the right people, got the appropriate tests. Worth a try.

Thank you. This is the argument I will put forward to day when I try to get her discharged.

Thank God your dear mum has you and your sister to advocate for her, so many elderly patients don't and are left to the cruel mercies of the NHS. It's appalling. I consider myself fortunate that my parents died suddenly without needing NHS intervention. I hope I go the same way.

Thank you. It really isn't in mum:a best interest to keep kee in that place and I can not see how any doctor would truly believe that.

I am out for a right today and determined to get mum out. Even a care home as unfamiliar as it may be will be better, at least she can have her own duvet, a quiet room and possessions where more than two people at a time can visit and Inna place where we don't have to battle for a cat park space (The hospital is notoriously difficult to park and yesterday we had to park a long walk away which adds to the stress of things).

Thank you for asking. I'll be honest, I did sleep till 4am and have only just woken, I'd forgotten to set my alarm. Luckily I'm.not working today so I'll jump in the shower and head up as soon as I can. My health issues means I'm often not too great in the mornings but hopefully I'll get there asap but I want to call the care home in a min to update them and see if they are happy to take mum giving the circumstances.

I am so sorry about your dad. My best friend lost her mum 18 months ago. She was calling me yesterday to ask how things are and when I explained she was in tears as her mum.was the same and she and her sisters had to fight to get her out. She died at home in the end and she took said about how the immense stress lifted as soon as they got her mum out of hospital.

That's all I can focus on right now.

Good luck @ApriltoNovember. It sounds like the IV fluids given to her yesterday would help her but am sure they aren’t going to give her those indefinitely so, if no treatment is being given, she should be able to leave.

OP I'm so sorry you are going through this. The lack of empathy and basic care in hospital is shocking all at a time when you are worried about your loved one. I can empathise having had to navigate my DMs recent hospital admission.

I turned up to visit my DM during her stay and she still had the tight tourniquet on her arm after a blood test was taken a few hours earlier. She was delirious. She had a catheter and on one of the days it over flowed and there was a huge puddle of urine on the floor. I was made out to be the problem and my mother blamed for not calling the nurses although she had learned by day 2 that no one came when the bell was pressed.

The attitude of the nurses was the absolute worst and I was worried about my DMs safety in their care.

Virtual hug OP x