Shaking with rage, can't sleep, NHS treatment of elderly

[Krupkrups]

My Grandma (89) has finally come out of hospital tonight finally after nearly nearly 5 weeks.

There's been nothing wrong she had a fall nothing broken, nothing but they wouldn't let her go home my uncle has lived with her for past 8 months since his divorce and she had a career who comes on a lunchtime. They said because she didn't have anyone at home which is bullshit, then social services got involved who were a shower of shite, then the hospital 'forgot' to discharge her twice despite my parents, uncle and care team being at home twice waiting.

Before going into hospital she could;

Get herself and dressed nicely

Get Downstairs / upstairs

Get herself to toilet and wipe herself - no incontinence pants

Make herself food and drinks (hot drinks, kettle on etc.)

Do crosswords

Move around the house with, slowly and with the help of a stick and frame but she did

Her memory was clearly going and she has slowed down cognitively in conversations but she knew we all were still enjoyed face times from my children, still read the paper.

She's come out and frankly it's like she's come out of a Victorian asylum, I am heartbroken, she looks deranged when she's awake sunken eyes strange rolling eyes, has lost an absolute load of weight - she was always very slender possibly too slender before now she looks like a famine survivor.

She is incoherent most of the time when awake.

Can't get out of bed / apparently is imobile - well yes she is now

Can't feed herself isn't eating when being fed

Is wearing adult nappies which have to be changed and the carers are changing and wiping her mess

Is covered in bed sores

I am weeping and raging I feel like driving to the hospital and punching the nurses in that ward in the face!!!! What have they done to her.

Oh, stop it.
The OP used it as a way to express her frustration.

Take pictures and complain to pals.

Just posting to say I’m so sorry about your DGM, OP. I completely believe you, People don’t know what like for the elderly in hospital. The bed sores should not have gone unnoticed by nursing staff, that’s appalling.

Older people do tend to decline quickly unfortunately after falls, but now that she’s home she may recover better.

I think that you/ your mum/ your uncle need to speak to the GP and ask if there is a specialist Medicine of the Elderly team/clinic she can be seen by as a matter of urgency.
The pressure sores absolutely should be flagged up - in our trust we have to report every one. But bear in mind pressure sores range from grade 1 (reddened skin) to grade 4. These should be reviewed by a district nurse and a treatment plan implemented. Don’t put sudocreme on them until you know what you are dealing with.
Carefully document the problems with your grans care and go to PALS. They should facilitate a meeting with your family and the Charge Nurse and consultant.

I'm sorry you are so angry, it must be such a shock and you are scared for your grandma.

It feels like the information is a bit jumbled up with all of the emotions, which is understandable.

The potential bedsores are a huge concern. Who has identified them? Is it the new carers? If so, and they are bed sores then they should not be telling the family to go to a chemist for cream, there should be an escalation protocol. I would advise speaking to them to get the facts and then speaking with her gp urgently. Does anyone in the family have consent at her gp?

The other thing to consider is that you haven't been given full information. If she was in hospital for 9 days before your parents knew...and then your mum kept you away as it was too distressing, then it's likely things were worse than you think or were told. Who in the family has LPOA? That is something to think about too. Has someone in the family spoken with a dr at the hospital and understand what happened? If the family have concerns it would be good to contact her gp to discuss, but someone is going to need consent. It may be that the uncle isn't the right person.

I'm sorry, it is such a difficult time and really scary, it's normal to feel like this. Some practical things can help it all feel less out of control.

Your story doesn't really make sense to me, OP. You paint a picture of an independent lady and yet your grandma had a carer coming in before she went into hospital. If she could wash, dress and make food for herself, what was the carer doing? When was the last time you saw her in person rather than on Facetime? Is it possible she needed more support than you were aware of?

The fact that your mum didn't want you at the hospital because it was too distressing makes me wonder if she was hiding other things from you. It seems bizarre that you just accepted that from your mother, a comment like that would have me getting there as fast as I could! You're an adult, it's your call whether or not to visit.

There may well have been substandard care in the hospital but the decline you have described seems unlikely. I don't feel like we are getting the full story - possibly because you don't have it yourself.

As an NHS worker, I would say that there is almost certainly more to this than the OP realises.

Many people view their elderly relative as "managing fine" but fail to recognise that actually they are quite frail and it only takes a tiny upset to knock them off their baseline.

Having a fall is a marker of frailty that tells us that things are not as good as they might appear.

OP reports that their relative was mobile (but with a stick/frame - that tells us that she was at least mildly frail), getting up and down stairs, washing and dressing themselves and cooking - so what was the lunchtime carer for if she didn't need any help? Social services don't fund these unless there is an identified need.

Frail patients, and especially those with a cognitive impairment, are very likely to develop delirium after any sort of upset to the system such as a fall - this can happen even if they stay at home.

As for "forgetting to discharge her", quite frankly that beggars belief, with the pressure on hospital beds right now, we aim to discharge people asap, and if for any reason they weren't discharged the day we planned to, 100% they would be discharged the next day. The fact that this happened twice suggests to me that there were other concerns that stopped a planned discharge - perhaps the therapists were concerned, or it could be that some discussions were had with other family members that you weren't aware of. For example, I have seen situations where the physiotherapist has identified that the patient can't climb stairs safely, and so the way to manage that is downstairs living, but the patient or family don't want a bed downstairs, or to have a commode.

My grandmother was confronted by a burglar in her home. She had been completely independent, living alone, her house in good order. But immediately after the even she had changed - speaking very strangely and doing odd things, not looking after herself well including personal hygiene, shopping etc. Needing a lot of extra help. My dad visiting all the time and getting lots of phone calls for help about basic things like operating the TV and microwave, where before there had been none. A few weeks after that she fell (for the first but not the last time) and was admitted to hospital with no serious injuries, just a skin laceration. My father visited her almost every day and she received generally good care. Nevertheless, she developed delirium from which she did not recover and needed a package of care to go home safely. During the course of these events she became extremely confused, a times abnormally sleepy, had hallucinations, rapidly stopped eating normally, lost dramatic amounts of weight and became incontinent. These are some of the typical features of delirium.

I do not know the quality of care your grandmother received in hospital but any significant event, including non medical (as in the burglary in my grandmother's case) but certainly including hospital admission can trigger delirium in the elderly and the decline can be precipitous and only partly reversible.

No matter how cognition friendly hospitals might theoretically be (and they are categorically not cognition friendly as a baseline due to the noisy, busy environment which is a part of providing urgent care), some elderly people would develop delirium just because of a change to their surroundings or a stressful event.

I think complain to the hospital about failings in care (certainly if there are pressure sores), but for the sake of your own piece of mind, try to understand that delirium and the decline it brings may have been unavoidable in this instance. Is it possible, if your uncle has struggled to accept the reality of your grandmother needing a care package to go home safely, that he has also been papering over the cracks before these events unfolded? In my grandmother's case, it's possible some decline before the burglary had gone unnoticed as she was living alone and not having very frequent family visits. But also, living with someone else who can help you manage day to day can go a great deal towards masking a gradual cognitive decline.

Really, we need to reform pre hospital care for the elderly so that following minor falls / infections they stay at home. Prioritising their intact cognition as much as their physical health. Many would get delirium anyway and another downside would be that some serious pathology might be missed and not all families would be able to accept this or understand the very good reasons for avoiding hospital admission.

I'm so sorry that your grandmother is in such a terrible state you are clearly very shocked and distressed, these feelings are understandable. My best wishes go out to your family.

Really sorry to read what your Gran has gone through OP, it’s a horrible worry to see our elderly loved ones like this.

Please contact her GP this morning in case the delirium is caused by a UTI and also the surgery will need to arrange for a nurse to visit to treat the pressure sores, you can’t do this yourself. It requires specialist treatment.

My DH visits his mum every week. He visited her yesterday and says he thought there had been a really noticeable decline in her condition. Since last week. It happens.

Your OP says there was nothing wrong with your grandmother but she had a fall. Bear in mind the fall might be the sign that there is something wrong that's heralded the sudden decline.

Based on what your uncle said this happened within a few days - which suggests it's not related to the care she received in hospital. After 9 days your parents were already telling you not to come as it was too distressing - so clearly she was already in a bad state by then. I suspect the care could well have been better, but lack of it is not the whole reason or probably even that the main reason that your grandmother has declined.

100% agree

This sounds very distressing but she may be far more ill than you realise which may be a factor. This amybalso have been the case before the fall and the admission.

The bed sores are 100% unacceptable and a formal complaint should be submitted that they were not noted and that she was discharged with them. And contact the GP to have a nurse review them and sort out a care plan.

In relation to care provided in the hospital, the bed sores are a good indicator it was likely to have been sub-optimal but my biggest beef would be with your uncle and your parents for not advocating, for not insisting on a meeting with the consultant in charge of care, for not insisting on a clear diagnosis and who does not stay with an elderly relative awaiting discharge and accompany them home, or take them home themselves?

Finally, if your grandmother had capacity and your uncle was staying at hers, with care in place, she could have discharged herself at any time. Hospitals cannot keep people there against their will. Was there a deprivation of liberty order in place?

I am sorry you are shocked and that your grandma is so unwell and also fully accept that hospotal care leaves a lot to be desired but that is why relatives have to be 100% on top of it and must insist on absolute clarity. I assume your mother and uncle have power of attorney?

Sorry to hear about your grandma, her condition must have been a shock to you. When you are able too, can you perhaps arrange to go and speak to the ward manager about your grandmas hospital stay. Unfortunately, even when there are no 'injuries' from a fall, it can be very difficult to get an elderly person back to their 'baseline'. The change of environment for someone who already has cognitive decline can certainly lead to delirium. How did your grandma react when the physiotherapists attempted to get her out of bed and mobilise her? It's not unusual for the elderly who have fallen to refuse to engage and this is difficult to manage. You mention swallowing problems. Did your grandma have a CT head scan whilst she was in hospital ? A SALT assessment? Was she on an airwave mattress? Developing pressure sores in hospital shouldn't happen. It sounds like her care needs drastically increased following the fall, which could explain why discharge planning took so long. I'd personally gather all the information from the ward manager first , then you have all the facts for making a complaint.

If the carers have identified pressure sores then they need to report it to their managers so that it can be raised as a concern. It's expected that this is done (even if patients are transferred between wards, and a pressure area hasn't been recorded in the first ward, an incident is raised for investigation).

I’m so sorry for your experience, I totally understand why you’re so upset. I believe my step Dad’s death was essentially nhs euthanasia- they just left him to deteriorate, it was awful. The elderly is just the tip of the iceberg though - I’ve seen enough to be absolutely terrified of becoming unwell in broken Britain. (Footnote: blaming nurses is not the way to go - it’s the system that is broken and needs restructuring from foundations up).

Bless you, Op, this is awful for you and your family.

But sadly, it's much, much more likely to be natural progression than neglect.

At that age, a fall is often the start of a rapid decline leading towards the end of life. It's happened to my and my husband's fathers and it is deeply shocking and incomprehensible when you see it for the first time.

With my FIL, he was managing perfectly fine, but clearly had dementia when he came out of hospital. That wasn't anything the hospital did - he was holding it together through routine, and once that was broken the dementia became very obvious and progressed rapidly.

The fact is, at 89, most, though not all, are approaching end of life. It doesn't take much to trigger a process of rapid acceleration of ageing.

Your best course of action is to make the most of the time you have left with her and support her in what ever way you can. It is awfully hard and I'm sorry you need to go through this.

Yes, unfortunately it is for some people!

Look up on Google:

John’s Campaign
Carers Rights UK https://www.carerightsuk.org/news

John’s Campaign was set up by two ladies, one of whom Nicci Gerard had a similar experience over her father as OP. I was part of John’s Campaign during Covid, and although I met Carers Rights Uk, I don’t know as much about them. I was invited to go talk to a cross party group of MPs and peers at Westminster, along with a number of other family carers. I had quite a few conversations with Julia Jones, the other founder and if I recall correctly, these kind of stories are not unusual. I also similar accounts as OP’s from the other witnesses and an MP at Westminster.

John’s Campaign wants every elderly person in hospital to have the right to have a family/friend carer with them; but it’s not to be a duty on the family/friends.

My advice, after what I heard, would be for any family/ friend, who is able to make sure they are there, as a carer and advocate for their elderly relative in hospital, to give basic care in eating, drinking, toiletting, as much as possible.

I don’t blame OP - look up John’s Campaign.

My mum ended up with untreated bed sores too during her long stay in hospital. It was along many issues in her care..

No advice but I know how you feel. The NHS is fucked.

With kindness op elderly people can deteriorate rapidly following a fall and many will never walk again.
Was she working with physio, OT on the ward. The hospital has a legal obligation to ensure that your grandma has appropriate support in place for her current state not the state pre fall . We're you unaware of her change of state ?
As far as the pressure sores are concerned report these to the GP who will send the district nurseing team to deal with them.

It sounds like you don't really have the whole story OP. They 'forgot' to discharge her twice? With the severe bed shortages in the NHS- unlikely. Discharge meetings happen every morning to identify and expedite patients who are potentially ready for discharge. There must have been some reason they kept her in hospital for 5 weeks- they would not have allowed a bed to be taken up otherwise. Also when you say she is 'covered in bed sores' (pressure ulcers) have you seen them yourself? They might be moisture lesions? Pressure ulcers are graded, from a patch of redness to open wounds down to the bone and cream would not be used on an open wound. I don't think it's OK to talk about punching nurses when it's clear you don't have the whole story.

You do know that some of us pay for a carer for our elderly parents.
My df won't let his carer do anything but we have peace of mind that someone is checking up on him on the days we can't be there.
It's company and it also means a sudden deterioration in his health will be spotted more quickly.

Some people really take it personally when the NHS is critisised. It's like a cult. In reality it's often piss-poor though.

I spent the day in an elderly ward sitting with my mum. Her curtains were drawn so the staff didn’t always see me as they came in and out. I was horrified by what I heard and saw from some staff. It could only be described as cruel. I cried that night having to leave my mum in their care when she couldn’t fully advocate for herself.

Not bizarre at all. If you had a vulnerable loved one, wouldn’t you want to be at the hospital with them to help them? NHS staff are under so much pressure, they don’t have time each day to make sure each patient eats, etc.

Not read the whole thread, but two suggestions:

1. Arrange a short term 24 hour support package so there is a 24 hour presence when she first goes home and then negotiate with the hospital for as early a discharge as possible.
2. Consider a short term convalescence stay in a private care home to help build her up before returning home.

Hospitals will be both reluctant to discharge if they feel there is a risk of further falls, and likely to discharge when a person is no longer ill but not fully recovered. Hospitals are disorienting places for elderly people, and not good for them, so best to get them out as soon as is practicable.

My mums carer used to call up her friends and one of them would be happy to stay over night for payment whilst others would cover days. . We always knew when my mum was better as she would notice someone was around and start demanding that they pay rent. It was normally about three or four days. Ditto someone I knew would have her mum in a nice local care home for a week to build her up following hospital stays, after which she would be well enough to go home.