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 personally would that this higher up the chain of command. Ask to speak to the senior manager for the ward your Mum is on and if you can't get through immediately - ask for the Chief Exec's office. With situations like this, there's is no point in keeping your compliants local to the ward / service you're on - you have to go high and be loud. This is no time to be the quiet, grateful relative.

Keep your compliant brief and to the point

• very poor communication -eg, no one available to speak to you on the ward
• totally inadequate care - refer to lack of assistance with fluids
• lack of knowledge by staff of a major health situation of your Mum, ie her dementia

tell them you want improvements from today. You wont get them today, but they need a rocket

Make sure she's sitting up and moving as much as possible, such as to toilet. Lying down and immobility can increase the chances of getting pneumonia.

Oh and I echo the comments about being vocal about your needs not being met.

It's pointless doing that with ward level staff though (except the charge nurse) you need to go higher up the food chain. And as I've alluded to before the medical and nursing systems are different so don't assume that speaking to the consultant will necessarily sort out other issues.

This is so awful. Sadly seems to be the case now, our NHS is failing miserably .
I have elderly sick relatives in and out of hospital and the communication is appalling, plus basic needs like fluids not even being provided and then losing the use of their legs because no-one ever gets them out of bed, no basic physio, nothing. My mum who was admitted after a fall then fell and gashed her leg because they didn't help support her to get up despite knowing she was incredibly weak. I was then freaking out about MRSA because they didn't clean or dress her wound. Apparently didn't have a dressing! I literally had to go in with a dressing and do it myself (also work f/t self employed!).
A few weeks in hospital when you're elderly is like a death sentence these days. I often wonder why our media don't highlight these issues more often instead preferring to concentrate on foreign affairs.
I would go to pals at this point. I often think of people like your mum with no-one to advocate for them, so many must die needlessly through sheer incompetence.
So sorry you're going through this

I sympathise. It's frightening how bad things have become.
Whenever my relative is in hospital I do my best to advocate for others close by as well as my relative. I seem to spend a lot of time asking for beakers because the patient can't drink, calling someone because a patient is fitting or bleeding, asking for bottles and bedpans, and putting oxygen tubes back in that have come out.
I feel desperately sad for those who don't have family members coming in to help.
It's not a case of people being " in the best place" any more when they're in hospital.
And trying to get any information is so so difficult. I would often phone 15 to 20 times before being answered.
Can the NHS even be mended at this point?
It is so fucked.

I 100% stand by my comment. I’m pleased you’ve had a better experience. Genuinely, I am. Maybe the system can recover if there are still decent people there.

I'm so sorry you're experiencing this.

I used to be a hospital social worker. Have they allocated your mum a social worker to facilitate her discharge? What care and support arrangements are there for her at home?

It sounds as though her being in hospital isn't helping. I would ask why she is being kept in hospital if there's no active treatment. Is there any reason why she can't be discharged home?

And definitely take a whiteboard marker and write on her board yourself!

I sympathise!

I used to ask when ward round times were so that I could phone in before/after to convey information & ask for details.

When there was lack of information, I’d phone the consultant’s secretary & ask for a phone call.

I am so sorry you and your mum are experiencing this..I was nursing over 40 years, still have friends who are, and kind and compassionate. There will be a ward manager or matron, get to speak to one of them. There will be a head of nursing services..Yes,pals but that will take time. I wouldn't bother attempting to contact the head of the trust..Most ward clerks are just admin and know little about the patient status.. the person giving out fluids, isn't responsible for giving them,it's the nurses responsibility.

Oh dear god! This hospital sounds abysmal. Harrowing reading. I do hope your mum gets home soon, and keep your own strength up.

I hope you can find somewhere suitable so you can get her out of there asap. There is no care where she is.

I agree entirely that nobody seems to take responsibility anymore. Clearly, nobody is picking them up on that, they get away with it, know they can, and so it goes on.

A ‘wild exaggeration’??!! You’re kidding, right? It’s now the norm in the NHS.

You must be in the incredibly privileged position of never having to endure this kind of ‘care’ for yourself or your loved ones. I can assure you - and there will be many, many others who could do the same - that this is now standard in the NHS.

The doctors may well be working hard - it’s hard to tell in the approximately 97 seconds you get to see them for - but the ward staff are often supremely unconcerned with patient wellbeing. Patients are routinely left in pain, lying in their own urine and faeces, unable to reach food and drink left out of their reach, risking hospital acquired infections while they wait for days for a quick test, etc, etc. If staff are on the ward, they’re often sat at a computer instead of helping patients. As OP said, if you have the temerity to ask for any help, they act like you’ve asked for the moon.

I don’t doubt that resources are lower than they should be. But it’s the attitude that’s often the main problem, and that’s a choice.

call pals asap. you may have to take half a day or ask for wfh so you can get there on your lunch or after work. id honestly write on the whiteboard myself but a bit assertive. alternatively id put a whiteboard pen on a chain and glue it to the wall.

the fact that it is consistently being missed that she has Alzheimer's and cannot communicate or feed herself is very worrying and it means major infomation isnt being passed. you need to write an email for paper trail. make a note of the calls and all the times you have notified them of this.

You going to have become extremely forthright and annoying. the only way in these places to get any effort it be the most annoying person that follows up and makes complaints and has a paper trail.

complaining helps to keep your family alive, forget about being nuisance

I'm so sorry for what you're going through. IME, hospitals are not safe places for the elderly. When my elderly relative with dementia and delirium was in hospital, I had to make several complaints to PALS. One day, having not seen or spoke to a medical professional for 10 days (I asked repeatedly, obviously), I simply stood at the nurses' station and said I was not going to move until someone had a proper conversation with me about my relative's care. We shouldn't have to be so determinedly assertive but I felt I had no other choice.

No they haven't done or suggested anything at all.

My elderly father had a stroke and spent a week on a stroke ward. My mother and I were horrified to see that staff simply put meals down in front of patients and then came back later and cleared the uneaten meal away without apparently noticing that the patient hadn't eaten anything because they were unable to feed themselves or speak to ask for help. We ended up feeding some of the patients ourselves and I still worry about what happened to some of those very vulnerable people after my father was discharged and we were no longer visiting. I was so shocked by the complete lack of interest and care shown by the staff.

I’d threaten ageism !!!
No 20 year old would be treated like this
I had the same with my aunt. Ages in hospital and no tests and no diagnosis

They need to get their act together and test to find out what’s wrong

Next time you are in stick a sign on the wall stating your mum has Alzheimer’s and she needs support to drink and eat. Take a photo and be seen to be doing so.

I'm absolutely fuming.

My sister and I arrived at 2pm as soon as we could get away from work (we work together) to find mum slumped and looking very lethargic.

As soon as I arrived I got 2 small cartons of apple juice in her and two cups of water. She then perked up. I found a nurse and asked how much fluid she has had today and she said about 200ml as she struggled to get anything in her. I explained (again) that mum is in late stage dementia and will only drink through a straw. She said she had no idea so had now placed this on the board above mums bed. I genuinely don't hold out much hope.

I've asked to speak to a doctor as we would like to know the results from her scans but no doctor available as yet as they are in a meeting! I've just written a complaint to PALS via email and am sat here seething.

I spoke to a local care home today as I would like mum discharged and placed in their care to recover. I need to get her out of here before they kill her off. I don't want mum dying in hospital.

OP can I ask if you understand what assessments your mum should have and what should be documented on her chart?

Can you check what is on the first page of her file re communication and decision making

Then
What departments should be involved physio nurtition SW etc

If she can not drink without a modified cup how are staff tracking her liquid intake. Who has assessed and has a beaker been recomended. Liquid intake can be a specific chart which needs to be filled in as if is used to track a measured amount of water.

If she has problems eating how is the ward food service tracking if she eats or not.

Etc

All of these questions need to be answered by either ward stass or her doctor of ward managers.

If you can get it charted you are asking how much and when rather than did she drink/eat/exercize.

And check her meds.

Sometimes the doctors decide that they will pull people off their meds without factoring in the various reasons the combination was used.

Or if a new one is added its side effect (or the combination) can create problems.

Thank you. I will note all of this for when (?) we get to talk to the doctor. I did ask the nurse how are they monitoring mums fluid intake but she just shrugged and said she had struggled to get mum to drink from the beaker. I explained that she will only drink from a straw but they said they don't use straws in hospital as they are choking hazards.

So obviously better to let someone die of dehydration instead!

I'd say you are staying there until the doctors come out of their meeting as you want to speak to them urgently. Be a nuisance.

Get that put on an email as a complaint to PALS
I’d get everything in writing

If there is no active treatment or tests happening and the care isn’t good why does she still need to be in hospital? Who has PoA assuming she doesn’t have capacity? You mention your father so presumably it is him and he wants her in hospital?

Could she go home with her carer visits and family to help her get better? That would probably get her out of hospital quicker than a care needs assessment and waiting for a care home place although I do think you should get a care needs assessment done / updated as her new normal might be less able than it was pre hospital.

Once she is out of hospital and stable, you probably also need some family discussions about what is in your mum’s best interests re future hospital admissions and treatments. With advanced dementia, osteoporosis and a cancer diagnosis some difficult decisions may be needed. My mother only has advanced dementia and is pretty healthy otherwise but if she got say pneumonia I like to think I would be asking if it had to be treated (easy to say when you aren’t in the situation I know). My wish for her is a swift, pain free exit before dementia takes her voice, her ability to feed and walk etc.

All the best.