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)

Please ask if the OT and/or Physio have been referred to. We are usually pretty good at managing this type of situation and giving guidance to the nurses (not that this basic level of care prompting should be required!). OTs in particular are very good advocates for patients and whilst it’s not specifically their job, are usually very proactive in ensuring good overall care for dementia patients, such as writing info on the white board, handing over to nursing staff the level of support your mum needs while in hospital etc. Please continue to try to speak with the Ward Manager and if needs be, ask for information for PALS.

Thank you. I will go with a list of requests tomorrow. The ward manager is off sick so I will try to track down the doctor on the ward.

I think respect / peace are same thing. Good luck.

I keep thinking of you and your mum.
Hoping for a move and your mum being cared for properly.

Thank you, that means a lot. It's been a hellish week.

After pushing and having to make my voice heard, mum is eventually home and all the carers are back on board.

Mum came home at 7pm yesterday and settled. I went to bed at 8pm and have only just got up, it is beyond exhausting having to advocate for someone with dementia, I slept properly for the first time in a week.

None of the care homes we looked at over the weekend were right for mum and we have decided to keep her home (and out of hospital). We are going to continue looking at care homes over the next few weeks and if and when we find the right one we will use it first for regular respite sessions and if mum does eventually need to go into full time care hopefully, we will already have a nice one in place......Fingers crossed.

Well done OP. It is exhausting but sounds like you have done your very best for your mum. Take some time to take care of yourself

Well done and its good that you got the hospital sorted.

Take any time you can manage to decompress.

🌻

Thank you for the update @ApriltoNovember . I have been thinking of you.

Your thread and experiences resonated with many of us with elderly parents admitted to hospital and the astonishing lack of basic care.

I'm pleased to hear your mum is better and back home. I would still pursue a complaint to the hospital. I was in a similar position with a hospital my mum was admitted to and getting all the concerns out in an email actually helped me process the whole experience.

Best of luck to you and your mum. Look after yourself as well x

Thank you so much.

I am seriously contemplating putting in a formal complaint.

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.

I got this for my OH on appeal after 2 refusals.

Contact Beacon CHC who give frere advice on this: https://beaconchc.co.uk/
They helped me hugely.

Though I have to say that having to fight in this way for care and funding is absolutely wrong in principle. It is truly a disgrace. I was wrecked after my OH died, not just by his death but by the relentless war that I had raged against the system for the preceding years.

Thank you Mischance, I will try that.

I hate complaining but have spoken to our carers this morning and the hospital have sent mum home with dreadful urine and diarrhoea skin burns. They kept that very quite at the hospital, no mention at all.

I need to complain not so much for our situation but so they can learn that they do need to up their care for the most vulnerable of patients, I saw too many ladies in there who obviously were unable to advocate for themselves and just left. I can't stop thinking about them all.

Definitely complain. They should have made you aware at the very least.

My father in law was admitted to an ordinary ward in 2008 and it was just the same. They couldn't give him medications on time for ongoing conditions as he was used to. The gave him IV antibiotics for the problem he was in for that caused very bad diarrhoea and even though he had very delicate skin, they were not able to clean him up.

So in spite of having timed visiting, MIL stayed and did all the personal care and they just let her. She had worked out where everything was and how they did things.

She said there was just not enough staff.

It's so sad that our health service has reached the stage where the most vulnerable are being left to fend for themselves or need family members to come to their aid. I find it all so very frightening.

This isn’t a new thing but it’s definitely worse than ever. The care of the elderly has always been poor but as the population is living longer there are more patients but no more beds or staff. I found with both of my parents when they have been in hospital there is never any urgency from staff and I’m not convinced that they are even on top of what is wrong with the patients and what is needed to care for them. It’s shocking. It still haunts me that my DM died in hospital, I wish she had been at home.

I'm glad to read that you got your mother home @ApriltoNovember .

I am sad to read about her skin burns but read my post above about bed sores. I was lucky in that by the time my relative was in hospital, I had learnt from carers and nurses and was caring myself so I knew what to look for with skin reddening and got my carer team to come to the hospital and take over the care with me.

I would complain as it will help record the problem and could contribute to saving someone else especially those alone or unsupported.

My advice is if you are going to complain and feel morally that you should, do it now - today - because the more time goes by the horror and anger will lessen and you'll end up never doing it.

Best wishes for your mother's future care and for you too - it's a tough tough place to be when you have a much loved relative in this situation and facing the end of their life. It's heartbreaking and you can only pray for comfort, the happiness that is open to them and a pain-free day to day life.

My mum went in to hospital with a chest infection. They tried to discharge her with major confusion, so much so she thought she was already home. She didn’t have dementia. They readmitted for a UTI causing the confusion. She died 3 days later. She had pressure sores all over her body. She had lost over a stone in the 10 days she was there. I have never ever gotten over the guilt of just taking her home. She was my dad’s carer who had dementia.

If she has sores through poor nursing care then definitely complain. This is the most basic of nursing priorities along with hydration and nutrition.
My late OH weighed about 6.5 stone and was a bundle of bones but his skin was unbroken because of the excellent care he received at the nursing home. So it can be done.

If your mum has a ReSPECT form, I would make sure it is documented on there that your mum would like to avoid hospital admissions where possible.

The care sounds absolutely appalling. I work in a hospital and am really shocked at the poor standard of care, and the huge effort you have had to go to so your mum could go home. I hope everything settles down for you both now.

@ApriltoNovember I am furious on your behalf. You need to tell her GP and she needs a pressure relieving mattress.
I don't know the procedure , for my mum this was arranged via the district nursing team who were contacted by the GP.
Pressure sores are hard to get rid of , I'm so sorry.
And yes complain.
Bullet points and what you want - an explanation how it happened and details of steps they are going to take to prevent it happening again.

I’m so pleased you’ve got her home @ApriltoNovemberand that her stay in hospital wasn’t the death sentence it is for many elderly people.

I still have not decided whether to complain or not. Part of me doesn't see the point. They won't tell me the 'outcome' besides the usual 'lessons learned' and tbh I don't think they will have learned a tap.

When mam was actively dying in her last week they didn't give her enough pain medication in her driver. Safe to say I need counselling for the things I heard my mother cry out when she wasn't kept comfortable. And apparently both myself and my friend who was there all week both separately thought at times about a pillow...... I would want to be scooped off the road by an ambulance and not lucid enough to have a say before I'd accept being brought to that hospital it's safe to say.

My poor late mum also ended up with terrible pressure sores. This reminds me that a nurse refused to change her incontinence pad and threw a new one at her saying she could it herself. My mum was extremely weak and couldn't. She was in tears after this incident because she had always been so independent. It was horrific. Such treatment seems to be the norm now. What the hell is happening to our NHS?

@Idontknowhatnametochoose I'm so sorry that happened to your mother. It's hard to read. Just the lack of humanity. That is completely different from someone being just left because there aren't enough staff and they are prioritising more urgent care.

It's really upsetting to think of someone elderly and unwell being spoken to like that.

Makes you wonder what the NHS will be like in another 30 years... I hope that when my time comes I have a heart attack at home in bed in the night and know nothing about it. The thought of death following a prolonged stay in an NHS hospital where you aren't fed or hydrated properly, aren't cleaned or turned regularly, are left to get urine and faecal burns and bedsores - when you aren't well anyway - and that is how you leave this world - fills me with fear and horror. I honestly would rather go to Dignitas tomorrow than die like that in 40 or 50 years. .

My relatives were ok because they had me who by that point was experienced in care, could afford to pay for an external care team to come to the hospital and wasn't afraid to lobby the right staff in the right way. I won't have anyone like that or with the skills I had. I'd just be left to rot because when you are seriously unwell, old and weak you cannot advocate for yourself. It really frightens me.

to everyone who has lost someone or been through this hell.

Thanks. It was dreadful. My mum almost never cried about anything - she was so stoic, so that's how upsetting it was for her. I feel like crying now thinking about it.

I feel the same about dying. I'm not close to remaining family and those younger than me are unlikely to be bothered about me or my care I'm late 40s and I hope and pray i die peacefully at home or else euthanasia is legal by the time I need it so I don't need to go into hospital.