Mother in hospital AIBU to refuse to take her home without a care package

[TheoriginalLEM]

Well i know im not BU.

We are at crisis point and despite A&E dr initially wanting to discharge, my refusal to accept prompted a frank discussion and he basically told me "do not walk out of her without a care plan"

So how do i make this happen? What do i ask for? A&E dr has put her down for a multidisciplinary discharge team - he did call it something but im sleep deprived and i cant think straight. This apparently involves social services.

My mum is difficult. This is categorically the understatement of the century.

Her issues are complex and compounded by mental health issues and possible dementia.

Crisis = acute aortic aneurysm with blood clots. Panicking vascular surgeons readmitting to A&E with ensuing chaos, lack of communication and now "an excuse to get a care package in place"

There isa DNR in place and dr suggests palliative care only - im a little wtf about that. She was helping me do her garden at the weekend, in a rare window of lucidity.

My mother is abusive which makes caring for her almost intolerable.

I can no longer cope.

What q should i be asking

TheOriginalLEM It is not surprising that you feel so conflicted as you have gone from being the person doing everything for your mum to waiting until professionals reach a decision about what should happen.

100 per cent agree with MitziK - these latest events prove just how right you were to say that you could not stand by as your mum was discharged home. Of course it is a really hard position to be in but this way there is a chance of getting something that is right for your mum and you in place.

One of the hardest things I've ever had to do was to accept my Nana (my grandparents brought me up from 7) going into a care home.

It wasn't at all the best thing for me. I would have found a way to cope somehow, but it was the best thing for her. That's what you need to think of when you feel guilty OP.

If you didn't love her you'd have washed your hands of her ages ago. You do love her, which means you have to let them assess her, and you have to fight to get the best provision for her care because she's your Mum and your job isn't to care for her, it's to get her the care that she needs, whatever that may be.

You've done the right thing by her OP.

And by yourself too. You matter too.

If your mum needs to go into a care home please do not feel bad about this. They will only do so if they feel it is in her best interests in terms of her own safety.

When my mum went into a hospice I genuinely felt like my heart broke into a billion pieces, I felt so guilty I could be that carer for her. But I have disabilities myself, a disabled son and my mums needs were very complex. Oddly enough once she was actually in the care home I felt better, I could see that that was where she needed to be and with some distance between us I was able to put things into perspective a bit - whereas before I was running myself ragged trying to be her full time carer - which I think is where you are.

You need to put your own health first otherwise you will be no good to yourself and your own family.

OP your mum is unwell and you're making sure she is getting care that will make sure she's safer and better her quality of life. People do it every single day for things like cancer and other physical problems, mental illness is just as important and just as in need of specialist help. Please don't feel guilty or anything like that. You have done what needed to be done for a long time but now for both of your health, you need to let someone else take over. I hope you both get what you need

Hope your ok today op.
Let's hope you can have a break now too.
Dealing with elderly people is very stressful.
Keep us updated.

It sounds like the cottage hospital is the best place for your mum. They will be able to properly assess her and hopefully get her meds and pain under control. He behaviour is s symptom of her mental state. Probably fear, feeling out of control, lack of comprehension etc. Some people just can’t be looked after at home they literally need someone there all the time. 4 visits a day for 15 mins is not enough. They can also only help someone so far if for example a person decides to refuse meds. If someone is violent to carers they will stop going in. Specialist care is needed. You cannot provide 24 hour care and are not expected to. If a care home is in her best interest you must not feel guilty. You really mustn’t. Just take things one day at a time.

If she needed a heart transplant you wouldn't attempt heart surgery yourself, so why assume you have the skills and expertise to deal with her current complex needs? The professionals say she needs round the clock treatment in an appropriate environment, and they are making this available. Grab it with both hands! You will find the adjustment hard - I watched my DH go through similar - but you need to do what's right for her and right for you. You are not letting her down - if you take her home, you would be letting her down, because it's not right for her, at the moment.
Contact your local Age Concern or Alzheimers or Carers Group for real-life support too. Your situation is far from unique as you can see from this thread.

As a previous poster says four 15 minute visits a day by carers is not a good solution especially as the first visit may be as late as 11am and the final visit 6pm so the person could be in bed for seventeen hours perhaps without access to food, drink and the bathroom. A care home is flexible with timings and there is someone available 24 hours a day. Visits are spent doing enjoyable things chatting, drinking tea rather than doing chores where resentment can build up. Neighbours who look down their noses because you have "put your mum in one of those places" have never been through the pre-care home worry and guilt after and exhausting few months of balancing work, home, children and the person with dementia (okay there are a few out there who are happy and able to do it but the rest of us can't)

I am worried that the capacity issue will scupper thing because at the moment she is deemed to have capacity

You have my sympathies OP, so if what I say next sounds brusque, then its more meant to be informative. I hope it helps.

I'm afraid if she is deemed to have full capacity, then you can't actually force anything to happen. As awful as I have no doubt it makes you feel to watch her struggling if your mum has capacity she has the right to decide whether she will engage with Dr's, accept carers and so on. You and I, her doctors and so on may feel she is making poor decisions- but as it stands, we don't get to take away a patient's autonomy because we don't agree with their decisions.

Obviously, if she is deemed to lack capacity, that changes. However, without power of attorney in place if she hasn't got capacity then she cannot grant you power of attorney either, which is where it gets trickier. You will be asked an opinion, but cannot do anything specific, including financially. What would happen in that instance is someone would have to be appointed as guardian via the court of protection (social services would usually decide who would be suitable to be appointed gaurdian- can be family, close friend or even social worker where no-one else suitable is available). This can be a lengthy process (and often expensive), unfortunately.

All you can do for now is to explain your concerns about keeping herself safe and you should also be clear that you cannot provide care for her. The concerns you raise should be looked into and she should have an assessment of her needs which would include assessing her capacity.

Ive brought my mum home. I couldn't leave her there any longer.

They neglected to administer her addisons medication despite my handing them to a nurse on admission, they were labelled and placed in her belongings. If i hadnt asked they would not have been given at all. When i asked i was told they weren't prescribed by their own dr so they couldn't give them. I was never made aware of this. I was told i had to.give them.myself and that they would have to wait for a ward round to be done before the dr would prescribe them. I tried to give them but she was too out of it. On reflection this contributed to her confused state as she was probably early addison crisis. The dr prescribed them in the evening but it wasn't until i explained why she had them -adrenalectomy that he went a bit quiet theninstructed that she have IV cortisone.

Her gp had given her a buprenorphine patch in leiu of her tramadol. I told several nurses and the dr that this was the case. Despite this they gave her tramadol- its the fucking same drug ffs. If i hadnt pointed this out they would have continued i inky kmiw this as im a vet nurse.

Of i had allowed her to stay i was effectively relinquished any say in her care. I couldn't do it.

Me and DP went and sat in the chapel and talked. Hebroje down in tears and begged me not to leave her there as i was still holding out for a care package etc. We were told that there was little likelihood of a bed in a cottage hospital so she was going to have to stay on this awful ward where she wasnt actually examined by a dr the whole time she was there.

There has been no follow up on the aneurysm as they said there was no medical reason for her to be in hospital.

I kniw you are going to flame me but i just couldn't bare to leave her there. I took her home and she settled straight away. I left her watching snooker. She was in such distress/rage when i got there but they had told me on the phone she was calm.

A letter arrived yesterday from the cmht for elderly sayung a psych will be visiting her at home next week so im holding on to this. I want my mum to have quality of life. Shes a fucking bitch but shes my mum. I asked for a care package not to put her away.

The OT was busy back tracking saying they were basing their assesment on how she was on the thursday but this was when she had not had her medication.

There have been so many failures in communication and i couldn't trust them to take care of her. It's far from ideal now but i had no choice

OP I'm so sorry. I don't think you're going to get any judgement here, you've done what you think is right and there's only you that can make that decision at the end of the day.

I suspected that would happen with her medications when I posted upthread about how it works. When the nurses realised that she was on steroids though there should have been no 'waiting until ward round' they should have been getting on the phone and bleeping until it was prescribed the buprenorphine and tramadol, they're not the same drug but they are both opiates. In someone with extreme acute pain you MIGHT offer low doses of another opiate on top of the background analgesia patch but I don't see the rationale for doing it with your mum, especially with tramdaol, surely it would only potentially add to her confusion?

Again I just want to say I'm sorry. You've been let down and it's not fair. I hope you get the support in the community that you need

I can understand why you did it

I was an in-patient last June, and discharged myself as I was so shocked at the total lack of anything happening. I didn't have my BP or diabetes drugs for 2 days as I hadn't thought to pack them at 2am when I was having chest pain

I'd push for some help from your Mum's GP and Social Services. Go easy on yourself

No one can judge you for your decision.

I knew that would happen with the Addison’s medication. On the Addison’s Facebook group I linked to upthread this sort of thing happens all the time. It’s horrendous. Medical staff generally do not understand the importance of the timing of giving steroids with Addison’s disease.

No judgement here - that's exactly what we did, when it became obvious the mythical care package was never going to happen. We took MiL back to her home and set about organising a care rota of family and friends. DH effectively moved in with MiL and took on most of her care whilst I stayed home 350 miles away with the DC.

Needs must but it's bloody hard. And we had a network of health care professionals around us since MIL was a long-standing senior nurse and SiL was a community matron. Even with all that local insider system knowledge and favours called in it was hard to get what we needed, without that, I have no idea how people cope.

Actually, if your DM does not have capacity, it’s not called guardianship - you can apply to the Court of Protection for Deputyship in finance and/or health and welfare. They would ask Social Services for their opinion, but it is not up to Social Services to choose the Deputy, unless there were no family or friends.

Even with Deputyship, if DM does not have capacity, then a best interests meeting should be held for decisions about DM and you and the family should always be consulted. Decisions should not be made because it’s the cheapest option for the NHS or SS, if that is not in DM’s best interests - so a care package or home must be able to meet her needs.

You are also under no obligation to care for her in law - and any assessment of her needs should be carer blind. The assumption is that there is nobody to care for her and what does she need in that case. They should consult with you or the family carers, and it can be not in her presence! You have a right to work, education and leisure opportunities.

It’s absolute nonsense to say that they cannot give medicine unless it’s prescribed by their own doctor - so long as you have them in the original boxes with the pharmacy labels on. We also carry the latest consultant’s report, listing DD’s medications just in case - she can end up in A & Es all over the place, so we have lots of experiences of hospitals with someone with a life threatening condition, who does not have capacity (and 10 years of getting social care and support for her).

It’s absolute nonsense to say that they cannot give medicine unless it’s prescribed by their own doctor - so long as you have them in the original boxes with the pharmacy labels on

It must be different in different trusts, here we absolutely cannot do this and can be disciplined if we do. There's no telling if that medication is safe for the patients current acute condition which is why it needs checking first and then prescribing if it's still appropriate. Some medications that patients usually take could kill them if given in their acute condition.

Actually no I don't think it is different in different trusts, I remember a nurse being struck off for it

No, we have been taking DD to A & E for 10 years - the doctors usually haven’t even heard of the drugs she is on; they can only be prescribed by a tertiary centre. Their pharmacy certainly won’t have them in stock. As I said, I carry the latest report from her consultant at the tertiary centre with me.

So what would happen if we called 999 at 6.30 pm on a Friday night; they give us the option to admit her for the weekend but their own consultant won’t be in until Monday - and as it’s only a secondary centre, they could not prescribe them anyway? Drugs have to be titrated up and down over weeks and months - nobody makes sudden changes! She can die at any time as it is, and could be dead without them.

The hospital has always given her the drugs! (Except the one time they forgot on a ward round)

Sorry i haven't read whole thread but there are 'time to think' beds in care homes which is what my mother had when she was discharged from hospital. It buys you time to decide your next move.

mont
I think there's confusion here between what we mean

The doctors can use your medication boxes to prescribe them as an inpatient medication. The drug charts arent technically a prescription as such (as you say, its already prescribed by your DDs consultants) its an order to administer for the nurses. Without this order, aka it being okayed by the doctor as for administration - and documented usually via the prescription charts - nurses can't give it. Your nurses will have been given the go ahead to administer either verbally or documented, but they wouldn't just give medication especially if it's as rare as you say.

OP have you been given any contact numbers in case there's a crisis? Least they should have done is link you to outside help. It not if you could post your area we could maybe help but I get it if you need to keep that private

Thankyou for your understanding.

We walked out of the hospital with nothing. We were told by the OT that if we left there would be no way to access further help and that we are on our own. I can't help but wonder if she was inexperienced because she told us that we didn't need to be consulted for the best interests meeting and that any decision regarding us being able to take her home was not permanent. When my DP said we want to take her home she then told us that decision was no longer down to us. There was another woman stood there who it turned outcwas senior and she told her our views must be taken into account and the information changed.

Like pp have mentioned above, i feel ive been lied to.

We have been given no instruction as to what to do regarding the blood thinners that we were gicen for my mum. These were supposed to be administered by the district nurse after the original admission yet i was told that as they werent in tgeir prescriptions list she didnt need them.

I should have brought my mum home in the first instance but was lead to believe that a care package would be offered.

I can't actually believe how this has turned out.

@Soontobe60, your comment is unfair given the health dynamics discussed here, this is not a situation where the family has abandoned their relative. Health, & social care, professionals involvement is needed here to keep the patient safe, to maintain her dignity at the end of life, and to support the patient & family in what is obviously a difficult time for all. Hang on in there @The originalLEM as the care package assessment & implementation is unlikley to happen at the weekend. It is only right for everyone that you get this support now

@TheoriginalLEM - I missed your later posts before I posted mine. Contact the Emergency Department again and ask for crisis numbers. It's unusual that a district nurse can be arranged over the weekend to administer injections, you could take your mum back to the hospital daily, they should have a rapid assessment unit or team (different names in different places). They may be able to help in the short term.

The links below may be useful while you wait for the psych team assessment next week.

For advice now
Contact Age UK | Get in touch with Age UK 0800 678 1602
www.ageuk.org.uk/contact-us/
If you need advice or information on money, care or health, call 0800 678 1602. We're open 8am to 7pm, every day of the year.

How to arrange a needs assessment. Your GP should be able to offer more advice regarding this if needed
www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/
www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/