Home from hospital with no care

[Guineapiggiesmalls]

My poor mum has gone from happily living alone, being able to drive and completely independent to the opposite in less than a month. She’s got a suspected brain tumour, but we’re still waiting for a neurology appointment. She has been hospitalised three times in the last six weeks with confusion, unable to speak, dizziness and pain that she can’t explain. At first they thought a stroke but now that’s been ruled out, she’s just waiting on the brain tumour diagnosis

We got a community alarm installed and yesterday she had to use it (because she was unable to use her phone) and ended up in a&e. They’ve discharged her today with increased steroids but told us she can’t be alone. She’s still incredibly confused, and can’t be relied on to take her crucial medication without someone helping (phone alarms wouldn’t work because shes confused by the phone). I live 50 miles away, work full-time and have two primary age kids, and no brothers or sisters. I’ve one elderly aunt who lives locally to her, but I can hardly expect her to pick up the care of her sister.

Does anyone know of anything we might be entitled to? Or can tell me they’ve managed it without neglecting their kids? I feel utterly desperate and on the verge of tears 24/7. My mum is adamant she doesn’t want to go into a home or hospice but I can’t fathom how I can manage her care on my own. We don’t have any space in our own home right now due to building works, otherwise I’d move her in in a heartbeat.

Ring adult social services. They should be able provide you with help, advice, mobility aids etc.

Also, explain the situation. I’m surprised the hospital discharged her without a care plan in place. To me, that’s negligent. My dm has been in hospital, and they won’t release her to they know her home environment is safe. (Family also live away).

Your best option will probably be carers. My dm was reluctant at first but have now got used to them.

Also, apply for Attendances Allowance. Fill it in as if it’s your mother’s worse day. It’s worth doing.

Speak to the hospital discharge team and explain she needs daily carers/district nurses put in place otherwise she is likely to need to be be readmitted.

You need to have had difficulty for 6 months (or be terminal).

Thank you, I’ve applied for the attendance allowance. She also has stage four lung cancer, but it’s controlled by a TKI so is technically terminal/life limiting.

its a horrible situation to be in. I wish we’d planned for it better when she felt well.

Macmillan were brilliant when mum was diagnosed with a brain tumour. They sorted all sorts out for us - carers, appliances and aids for her house, a blue badge.

Sorry you're going through this.

Sorry to read this. It seems so cruel to let someone out of hospital in this situationwith nothing set up as care .

is there any way you can get compassionate leave or a dr’s note so you don’t need to work for a bit? anyone that can help with child care for a while? Just while you sort stuff out ? I agree with PP about Macmillan and Id be on the phone to the GP asking for advice too. Our loved one was looked after in a hospice ( 10 years ago) and it was outstanding, maybe your mum will reconsider that at some point? Honestly they managed the symptoms so well and were so kind .
Best wishes OP to you and your mum , don’t regret not planning, some things can’t be foreseen.

Hi, I’m posting on this again hoping that someone who kindly responded could help again!

my mum has been admitted again, it appears she had a ‘cardiac event’ last time she called 999 (last week) but the hospital simply discharged her with increased steroids. We went in for neurology appt yesterday, an ECG showed this and she was admitted immediately. There is to be no further treatment for her brain tumour, it’ll be palliative care.

Shes expected to be in a few nights, but what I wondering is now that she has been admitted would the hospital advise on care before she’s discharged? They can see they she’s very confused, and know she lives alone.

i feel clueless about this all.

Tell the ward clearly that you do not live with her and only come over once a month (or whatever). Do not offer to come over more frequently, or to go off sick etc. They must arrange suitable ongoing care.

This is for them to arrange.

I’m sorry to hear that your mum has declined, but please don’t feel like you have to offer this or that.

Also, people might say ‘well the system is stretched, we need to send your mother home even though the carers are not ready’ etc. None of these issues are anything to do with you, if they say she cannot be left alone or needs a care home or carers then she must stay in hospital until that is arranged by them.

This is the flip side of the woman whose grandmother was left with a broken hip for umpteen hours with no ambulance pick up as no ambulances could iff load. The system needs an interim “rehab” or nursing home space.

If they send your mother home like this it would be an “unsafe discharge” - mention that to them. Ask for help from MacMillan and the adult social care/geriatric care team. It sounds like she will need a care team or to move to a home. Did they give you any idea of her time left so you can plan better? It sounds like you need a couple of days there to sort things. Can you speak to local care homes? Do you know her financial situation or have POA?
Hope you have people around you too.

You are experiencing the opposite problem I had . I was desperate to get elderly uncle home as I intended to look after him but they refused to release him without a care plan put in place . So he would have been there at least another week , taking up bed space, the so called bed blocker.

I am afraid you will almost have to refuse to let them discharge her in order to speed their care plan proposal.

As a PP said she has had a failed discharge or an unsafe discharge as it's also known. A package of care should've been put in place before she was released home on each of those admissions. This can take some days to organise.

Speak to the ward sister and ask about her package of care. Hospital should handle it all. In the case of my late DM they liaise with social services, a local rapid response team in some cases, district nurse, GP. Good luck.

The hospital will have a Discharge Team. Track them down.

I'd be interested to see the decision making leading to your mum's first discharge. Either way start asking loudly and frequently about the discharge plans for your mother, stating clearly that her previous living arrangements are unsafe for her.

Would she qualify for funded care (savings less than ~£24k, or potentially Fast Track CHC)? Or would she be self-funding? If self-funding then when you are starting discussions about discharge you can get an idea of what's best for her and go and talk to care providers - it gives you a lot more control.

Sorry to hear this, she clearly cannot return home without a full care package with carers, district nurses, equipment. I would speak to her doctor and nurse so they can give you a realistic prognosis, she will be safer in hospital, a hospice, a care home or home but not until everything has been arranged. Do not allow them just to send her home, this may not be their plan anyway as she's confused and so poorly. If she has a poor prognosis the hospital staff can apply for fast track chc funding, I imagine they will also refer her to the palliative care team.

My husband has been waiting 10 days to be transferred to a rehabilitation place. We found out yesterday that they hadn't even done the referral. They came to take him today but it turns out they hadn't done the discharge letter. Such a waste of a hospital bed.

My Dad was diagnosed terminally ill with liver cancer, and unfortunately the worst side effect was constant diarrhoea and confusion because his brain was flooded with toxins that his liver couldn't process. We had a great palliative nurse, she arranged 4 care visits a day but the care company were horribly unreliable due to his location and frankly some of them weren't worthy of the term carer. Same with the district nursing team/GP surgery, and it was apparent within weeks that we couldn't manage his care at home. My sister and I were spending about 12 hours a day with him between us and both running businesses/working full time. In the end, the palliative care nurse intervened when Dad went inadvertently without morphine for 24 hours and he was found a place in a hospice then a nursing home. And that wasn't without issues as the nursing staff were so set in their routine and would often refuse drug dosages. The palliative care consultant intervened in the end and gave them a rocket - thankfully Dad's last 48 hours were the only peaceful ones he had in there.

If I had any advice, I'd say don't agree to community care unless someone is there 24/7 to manage it. The system is so broken that I would really push for some sort of nursing home/hospice. And I'm so sorry you're going through this

I'm sorry you're going through this, OP.

Can you ask for your mum to be referred to the community nursing service and a local hospice? If you're up to it, you may find it helpful to contact an organisation like Maggie's or The Brain Tumour charity for guidance on what help might be available.

www.thebraintumourcharity.org/living-with-a-brain-tumour/end-of-life-bereavement/preparing-end-life/#h-what-does-end-of-life-care-involve

As PPs mentioned, keep talking about an 'unsafe discharge', and be very clear about how you cannot offer any care at all for her. This will sound very heartless, but with services as stretched as they are, if you give any indication that you can help with her care, suddenly it will be all your responsibility.

The Cockroach Cafe threads on the elderly parents board have lots of regular posters who have been through all of this with their relatives, and can offer a listening ear/gin/advice.

@Guineapiggiesmalls

The discharge team at the hospital can help to coordinate suitable care, they will advise whether she should go home with care, to a residential care facility or a nursing facility but you can have input too as it depends on your circumstances too. Prognosis will be needed before you get to that point so perhaps come back to the thread once you've got a better understanding of the situation. Also if you are able to say the general area people may have suggestions

@Guineapiggiesmalls just to echo what everyone else has said….a hospital discharging someone who lives alone ,with significant needs, without having a care plan meeting, is negligent. Please make sure that whoever sees your mum next, takes her house keys home with them if she still has them. If they are giving steroids this may lead to a short term improvement but consideration is needed about the longer term. Discharge planning for someone in these circumstances, should begin from admission , as they may need OT, physio and social work assessments. Make it very clear there is no one who can provide 24 hr care, unless you or another family member are willing and able to do this. I know she may not want to consider palliative / hospice input, but brain mets as a result of lung cancer, without any life extending treatment being considered , means that her time is limited so support will be really useful. My hospice would visit and support people whether they were at home or in a nursing home, so it’s worth asking for a referral if she will accept this.

I’m so sorry to read that your Mum has deteriorated so. You need to insist on a care package before discharge. Speak to the hospital, involve PALS, speak to macmillan. She can’t be considered safe to go home.

Ask for an Occupational therapy assessment. They will assess your mum's level of function and come up with a plan to keep her as independent as possible. This may well include a package of care, equipment provision and services to support her emotional wellbeing.
I'm very surprised that this didn't happen at the first admission. If she is medically stable (note you can be very poorly indeed but still deemed medically stable if your drug regime is sorted) then she doesn't need an acute bed and may be moved to intermediate care (IMC) until her other needs are met. Intermediate care is sometimes provided in nursing homes.
If she has rehab needs or is waiting to see the OT, the NHS pays for IMC. If she is just waiting for social care she may have to contribute to the cost of her stay. It all depends on whether she has "criteria to reside" some aeas enforce this rigidly, some are quite lax, but it is as well that you know she may be charged.
It's a nightmare, I've been through it with my own mother and I wish you all the best.