Distressing situation with my mum - need advice

[Willowcat77]

My 82 year old mum became very ill with Covid/low sodium and has now been discharged from hospital after 3 weeks. She is now at home.

Problem is, she has been completely confused with severe delirium since entering hospital and shows no sign of improvement even though she is now back in her own home. She keeps asking where she is and doesn't recognise people and keeps saying in a baffled voice "why am I alive?"

She thinks the hospital nurses were trying to poison her so is refusing to take the medication they have prescribed. I don't think she is safe to be alone but the hospital says she doesn't need a care plan because she is physically okay. Problem is I live over an hours drive away and have a job and a family. I don't know how this is going to work. I can't afford to give up work. I've already taken 3 weeks off work and they want me to come back.

4 weeks ago she was completely independent and now she is like a frightened child. We never got on prior to the crisis - she had a very difficult personality, possibly bipolar or borderline, but now she clings on to me and won't let me go. I am the only person she will accept in the house - she went NC with my brother 30 years ago, so no help there.

I don't know what to do. What do other people do in these sort of situations?

Another one saying make 100% sure she doesn’t have a UTI. The symptoms are very different in the elderly and very often present this way. Being in hospital could also have contributed to it with dehydration etc.

Do you have POA? Does she have money that she/you could use for some immediate help.

It sounds a difficult for you.

Id strongly advise that you call adult social care in the morning and explain that you are no longer able to provide care and list the urgent things she requires support with. Also contact the gp, the delirium needs further investigation. You need to be firm with all parties. There is a real care crisis at the moment but your situation sounds urgent. If things become unmanageable or you feel your mum may be a risk to herself or others ring 999.

The agitation and difficulty sleeping plus the?bipolar history might indicate that hypomania should be considered if no physical cause for her delirium can be found a mental health assessment should be requested.

It does sound like an unsafe discharge. We had this happen with my Dad last year and it was utter hell!

I think you should contact your mother's GP. Talk about getting her re-admitted to hospital. You can't be expected to cope with this. It is totally unrealistic, not to mention dangerous. If you are successful getting her re-admitted then do not be so available the next time. Tell them that nobody is available to care for her and she isn't safe to be on her own. Therefore, they can only discharge if it is to a place that can assess her needs (discharge to assessment) and get a proper care package in place before she can go home (if she can indeed go home, and not into a care home).

Unfortunately, the system these days is in such a terrible state that the only way to possibly get anything that you and your mother need out of it is to hold firm and tip it into crisis. If the hospital cannot discharge her then they will have to come up with something else.

Otherwise, contact adult social services and explain what the hospital have done. Unfortunately, you won't be alone and they will have heard it all before. Be clear that you are unable to provide care and will be leaving very soon (give a date by which you must be back at work).

If this all sounds very distressing and unfair all around then that is because it just is that way now. I've been where you are with my Dad, and I can only wish you luck with getting through the next few weeks.

Thank you so much for all your replies. Sorry I'm too frazzled to reply to you all individually, but I have read them all and am very grateful for all the valuable advice.

@Topseyt123 Do you mind me asking how your father's situation was resolved?

My Mum's GP did a home visit today and she agreed to support us with an application to Adult Social Care.

My mum seems a little calmer tonight, so maybe I'll get some sleep.

So it's 4.50am and she has been calling for me throughout the night...Don't know how much more I can take...

This. When you email the CEO copy on your mum’s MP (put her address & phone no at the top of the email - mop needs this - and write ‘I am cc-img so & so MP for information - we do not require his/her support at the moment, but this is for awareness ). They usually open a case anyway & then you have a number t quote when you cc them into future correspondence.

I used exactly this approach whenever my severely disabled son was not able to access services he needed & in terms of getting a response it worked. Esp if MP was copied in. Without MP I copied in I might still wait 2 weeks or not receive a response. With MP cc’d always received a response within 24 hours. Fastest was 5 minutes from the CEO at 9pm saying he would sort it out and I’d hear a plan by 11am the next day (I did).

You may he directed towards PALS & they are fine - but slow - so no use in this situation.

@CaronPoivre @Sindonym I want to do all of these things, but I'm worried that they might take her back to the hospital. She is terrified of going back, it would be too cruel. The best thing would be a home carer, problem is she would probably not accept anyone apart from me - she is a very difficult person, even before this crisis.

I haven't slept all night again and am supposed to be at work next week.

I am autistic (NHS diagnosis) and burn out very quickly. I think I am on the verge of it now.

I'm so sorry OP
it sounds like it might be better if she goes back to hospital to have her mental health needs assessed and to have time to put the care package in place.

mum is in respite care atm really because I couldn't look after her in her home when the hospital said she was fit for discharge. I feel incredibly guilty. But on a rational level, I know I can't look after her.

is she anxious? Is that why she is calling for you?

Oh and re burnout
i have depression and anxiety and had to tell mum bluntly that we were putting her in respite to save my mental health.

Another one here saying you need to look after yourself. You can't make yourself ill because of the choices your mum makes (granted that there may be some question about making choices with her current mental capacity). Those of us growing up with inadequate parenting may have had years of conditioning of putting our parents emotional needs before our own. Her needs are not more important than yours, though they might seem more critical at the moment. I have been in a similar position and I am now ill myself. There should be a local carers charity who can help you with advocacy.

They’re unlikely to take her back as she does not (according to them) require hospital treatment so she would be bed blocking. What they should have done is discharge to an appropriate care package. Also cc MP to safeguarding/SS correspondence. . If she has a urine infection that can be treated at home. She does need an appropriate home care package & you can be clear that is where it has gone wrong.

Oh OP, for your sake and your mum's she may need go go back to hospital and you don't need to feel guilty.

Youve had good advice here, follow it.

Remember you are exhausted and stressed out, so you probably are not thinking too clearly yourself.

I remember having a completely embarrassing hissy fit in a hospital when they tried to send my 80 year old mum after weeks in hospital with absolutely no assessment of her ability to live independently. At that point she couldnt have got to the loo by herself. The NHS mess up sometimes and it isnt joined up with social care. One minute nothing is happening and then the next, boom, they're discharged.

You have been a superstar so far, but your mum needs medical help again. Good luck.

In terms of your mum not accepting she needs help from someone other that you - that is common. Do you have someone she listens to who can spell it out to her. My dad had to speak quite firmly to a family member who had my mum pretty much on her knees running around while refusing external help that was available. She listened to my dad so accepted help and then my mum was able to provide a lot of care (just not at burnout level) right through the months of her final illness.

OP the sodium level is a thing, I ended up in hospital a year ago, completely delirious, thought the nurses were trying to kill me, kept trying to run away and worse. I'm 58 and not a difficult person, have no mental health issues. Mine was caused by low sodium and an undiagnosed over active thyroid. Took 17 bags of the intravenous fluids they give you before I even knew who my daughter. It was really scary (for both of us) I've been absolutely fine since they got my thyroid / sodium levels under control, yet in the beginning they were talking to my daughter about getting me sectioned. It isn't necessarily an ongoing thing. What have they prescribed for her sodium levels?

They might but sometimes you have to be cruel to be kind. You will break and she is at risk of harm. Being overly nice might not be in her best longer term interests.

That said, hospital beds are precious. They are not offered lightly. If they can assess at home and get support in place they will. The risk of that is she doesn’t have an underlying problem, that might be treatable, treated. If she did not have delirium four or five weeks ago they need to understand why she has now. It’s unforgivable to assume people over a certain age just have dementia and leave it at that. Many, many causes of delirium are treatable and should be treated.

Whatever the causality, the situation is unsustainable. She needs treatment or support that has not been provided. Do give them a ring rather than just trying to soldier on.

They cannot take her back into hospital without her consent if she can understand enough about the decision to say no.

I understand your reluctance to push for a hospital admission but here are some things to consider -

even with a really good social service dept and a maximum care package from them - your Mum will not get 24 hrs home care input. She wont get constant overnight care presence. (Not unless the rules have changed since Jan 2021, when I was told social services don't do over night cover)

High levels of night time care trigger admission for care homes. My Dad was 'OK' caring for my Mum during the day, but it was difficult to get her to bed and she would wake and wander, including getting out of the house. You can't be up and alert 24 hours a day.

It will take time for Social services to assess your Mum - again even with a good dept, although most can get some sort of care in place pretty quickly once the assessment is done.

A maximum care package will look something like this - 4 visits per day, of about 15-30 mins per visit. The carers would for example get you Mum up, washed, dressed, breakfasted. Lunchtime visit - they would make a sandwich or serve a microwave meal. Early evening - as for lunchtime. Evening sometime (can be early) get your Mum ready for bed, put her to bed and leave.

Get that call into social services today and tell them you're going home this weekend (give them a day and time) and your Mum is vulnerable. Tell them you've held the fort alone for 3 weeks and you are physically and mentally at breaking point and about to loose your job if you don't go back to work and you live a considerable distance away. Don't expect your GP to do much (sorry even the nice ones ) - home care is purely a social services responsibility and you will have to make that call yourself.

Then at the day and time you have given social services - you get in your car and you drive home. Probably will be one of the most difficult things you will ever do. But all the time you are there, social services can't / wont class your mum as vulnerable enough. You being there, keeps her safe enough in their eyes.

Many many times, the situation has to get worse before it gets better. It's like watching a car crash in slow motion - everyone knows it's going to happen by there is nothing you can do about it and it's shitty, absolutely shitty

You will come across the term "capacity" and you will come to hate the term. Capacity is a good concept - it legally endows individual the right to decide what they want to happen to them. So the individual can choose to have a flu jab for example. However it falls down when dealing with people who can express an opinion about their care, but actually don't have the full understanding of what they are deciding and / or have the ability to take the appropriate actions to care for themselves. For example someone who has dementia and forgets they've left the gas on when making themselves some soup and then drapes the tea towel over the hob.

So how does this effect you - say a social worker arrives at your Mum's and after assessing the situation says to your Mum, well Mrs Willow, we can get a carer into you for 4 times a day 7 days a week starting tomorrow. Your Mum says I don't need a carer, I've got Willow here. No you says I'm going home tomorrow. Mum says, well I'll be fine, I'll manage myself. I don't want / need a carer coming in. And that's that. Care offered and declined by someone with capacity. You know your Mum can't manage. The social worker also knows your Mum can't manage. But neither of you can force your Mum to accept care she doesn't want. This is where and why you have to step away. The person who everyone thinks needs care, has to be allowed to fail. It's the law. It's not the NHS fault, it's not social services fault, it's not your fault and it's also not your mum's fault.

I'm sorry for the essay. I'm sorry it sounds bleak. But the situation is bleak and you're in the middle, trying to do right by everyone and it's taking it's toll.

Please for the sake of your own health and well being - make that call to social services this morning.

@DPotter @CaronPoivre Thank you. That's a very informative post @DPotter It sounds terrifying but I needed to know this. I have now contacted Adult Social Care and they have emailed me links of forms to fill in. I'm so sleep deprived I can barely think but I will try to do it.

Thanks to everyone for your support here.

My Dad very quickly became very unwell again during his first three days at home. He had also become totally immobile during his hospital stay which made things impossible for us.

I was living in my parents' house at the time and trying to help the carers take care of both of them. His bilateral pneumonia returned with a vengeance and there really was no alternative but to call paramedics and have him readmitted to hospital (a different one this time).

Unfortunately there was to be no resolution in our case. He was there in the second hospital for about 10 days and they tried many things, but he did not recover and died. It just wasn't to be, though I do wonder if there might have been a chance he could have had a little bit longer if the extremely traumatic failed/unsafe discharge from the first hospital had not happened. They were supposed to "discharge to assessment" but they didn't.

The whole system is an utter disgrace.

My 88 year old Mum was very independent, doing shopping, cleaning, etc and had been living alone since my Dad died 28 years ago. Unfortunately she became unwell with heart failure about 8 months ago, has steadily declined and is now extremely breathless all the time. Following a fall a few weeks ago, she spent just over 2 weeks in hospital before being discharged home. The local authority rehab team were supposed to come in each day for 6 weeks, but after a couple of weeks she decided she didn't need them any more. When in hospital and since being home she has no interest in eating or drinking. Due to being so breathless she is constantly exhausted and just sat in a chair all day. Last Sunday evening she fell from top to bottom of the stairs and is now back in hospital. I got a call from the hospital rehab team today saying they were looking at discharging her home. I have visited her this evening and there is no way she could cope at home. Still no interest in eating or drinking, permanently breathless and would be unable to do anything without help. I live an hours drive away. Thanks to reading the other posts on this thread I was armed with information and told the rehab person that it would be a safeguarding issue and I could not be called on as carer. These situations are a complete nightmare and I feel for those having to deal with similar.

Just sending positive vibes, OP. When my mum was in a similar situation, and a few other things came along, I had a complete autistic burnout and have taken so far eight years in recovery, unable to work. You need support. Don't feel bad about demanding it.

She is refusing to take the hospital medication because she thinks it's poison. I can't force feed her🙁

Crush it up and put it in a jam sandwich.

Call an ambulance because she's delusional and that's essentially a mental health crisis, she's not safe to be left alone. Tell everyone who you speak to about this that you live an hour away, have a full time job and a family life, are unable to be a carer at all (because that's the truth of it).

Hospital can't discharge her unless they have somewhere to discharge her to. Home alone isn't it. She either needs to recover properly in hospital prior to discharge or have sufficient care provided outside hospital.

Oh and go back to work/normal life tomorrow, don't wait around to see what doctors say, they can phone you if they want to update you

I have filled in forms for Adult Social Care, but no reply and am trying to look after her whilst also going back to work. I haven't seen my own home and family for ages. I'm trapped here with her. I want my life back. I want to run away and never come back. Do I have to give up my life for her? I haven't got a single happy childhood memory, she made all our lives a misery. I thought I'd escaped years ago bit now I'm trapped with her in a living Hell.

@topsy So sorry about your dad, that's awful 😕