How much time? Deciding between care at home or care Home?

[RoxytheRexy]

My mum is in hospital and has been for about a month now. She went in with pneumonia very unwell. We were informed she was palliative and now she has rallied to the point we are thinking about discharge home.

Mum was pretty bad at managing at home before admission to hospital. End stage COPD and cognitive decline/paranoia/anxiety. We had issues with her not opening the door to Meals on Wheels and refusing medication etc.

The hospital say she is fit for discharge. My sister attended a meeting with a Social Worker and an Occupational Therapist where they basically said pick a care home and threw a leaflet at her about paying for care (my mum owns her own home so I would imagine we would be self funding). We feel a little blindsided by all this.

Unfortunately this has come at a really bad time. I’m 4 hours drive away and 38 weeks pregnant. My sister is my childcare for my 3 year old when I go into hospital to have an Elective Section on Monday.

We are stuck. We can’t look for care homes this weekend like the social worker asked. We were hoping to try care at home as that has been suggested previously. How can we buy a little time to make some decisions properly?

if there's no one to look after your mum, tell them it's a safeguarding issue and they can't discharge her to her home.

she sounds like she can't go home at all. They must find a care home for her, even if you have to pay, (which you don't, I think, for the first six weeks).

I think you're probably a victim of the time of year as well - you must stand your ground and tell them there is no one near her to look after her.

I hope you don't mind but I'm going to link to the general thread about parents to see if anyone can advise you further.

with today being Friday, they are really going to try it on - you have to give them a firm "no" and say there is nowhere safe for her to go - which is quite true.

Did your mum have care at home previously?

When people have no relatives then SS have to sort the care out. They have to decide if carers going in four times a day will work ( with their own keys) or nursing home is needed. They can and do make these arrangements . If it doesn't work out then they can be changed.

You can be firm and say you are in no position to make these arrangements yourself currently.

I think Grace is right, you have to tough it out and say no - and ask what are the alternatives? It's not even about convenience for you, what they are expecting you to do is impossible, chosing and getting things in place for the right care home takes time (they have to have a space available that suits her requirements, etc).

My experience is there are lots of changes of plans even on a daily basis, and being firm about what you can and cannot do (even in the face of veiled threats about your loved one's treatment if left in hosp- eg transfer to a ward with no rehab available) can lead to further options becoming available.

This has come at a bad time. You won't realistically be able to research to be able to make decisions for at least a couple of months. If your DM is fit for discharge there's no way they can accommodate her in hospital for that long, so she'll have to go somewhere, either home or care home. If Social Services aren't willing to put in the resources to keep her at home, or do not think it is feasible for her to manage at home, then it'll have to be care home. (Theoretical but impractical in the circumstances alternative would be for you to pay for private care at home - as a rule of thumb once you get to 4 visits a day it'll exceed care home costs.)

If you can get a "rehabilitation" package at home, this is free for I think 10 weeks.

But I think you'll have to consider a temporary placement for 2-3months, and then see how it goes - you can either leave her where she is if she's settled, move her back home with care, or move her to a different home. You can look it up, but I think there is a provision not to sell the house immediately, so she can come back to it.

How much can your sister do in the way of research?

Their priorities are: 1) managing scarce resources fairly 2) what's good for your Mum. You don't feature on their priority list at all - you are merely a resource to be squeezed dry. So you need to be tough, and put firmly to the back of your mind any feeling of being judged for you commitment or lack of to your mother, and make sure that anything you agree with is achievable for you both in the short term and the long term.

You dont have to look at homes, just say the reasons why. They may be able to discharge your mum to a community nity bed which is nhs if she doesn't need to be in hospital, from there they can do their assessments of her finances and what help she needs. She should have or already had a care needs assessment from the nurses, o,t, and probably the lung care nurse will get involved, she may need long term oxygen and not all carehomes will manage this. She will also need a plan from the doctors about her medication, does she need nebulizers and a nebulizer machine, medication, palliative care referral, decision about future admissions to hospital. If she wishes to go home will she need the bed downstairs if she gets out of breath, a hospital style bed and pressure mattress if she's not walking around much, a recliner chair, commode, care alarm system put in, a key safe for the carers, a microwave if carers don't have time to cook a meal, have they found a care agency who should come and visit your mum in hospital before they agree they can meet her need s. If you are looking at carehomes then the manager or senior nurse should also visit mum in hospital to assess her before they agree to her moving there. If she has been given a palliative diagnosis and the doctors feel she may not recover then ask the doctor and ward sister to assess her for fast track funding, this is non means tested. Does your mum have the mental capacity to make her own decisions, does she want to go home or I to a carehome, if she can make her own decisions then they need to discuss all this with her and she can visit carehomes if she's able. If she doesn't have capacity do you have power of attorney for her money and health. Don't be bullied into making a decision, they will say she has to fund this herself but she is entitled to a free needs assessment, you can read them on line, its a chc checklist which determines how much care she needs. Ask to see this, say you need it so she gets the right level ofcare. Even if she does have to self fund she may get 6 weeks free care, fnc funding which is a contribution made to the carehome, if she goes home she can apply for attendance allowance and maybe other benefits. The nhs is desperate for beds so they do try and discharge people but make sure it's safe and what your mum wants. If she has mental decline has she had a capacity assessment.

This is all great. Thank you so much. I’ll work through the responses and try to answer questions. However I’m currently in Antenatal clinic having a preop assessment. It feels never ending!

Mum didn’t have a care package previously. She had daily Meals on Wheels and was under the Community Matron and District Nurses for medication management. She had nebulisers at home and has been assessed at needing oxygen but has so far refused (Mum can be a difficult personality at times!) We’ve previously had a reanablement care package following previous hospital admission.

Palliative care referral has been cancelled as Mum has improved so much. Everyone seems very surprised by this.

That’s a great list of questions to ask and things to consider. My sister is very much for the idea of trying Mum at home first before we look at a care home. We have a stair lift but I think we will be looking at a downstairs bed. We will need a keysafe and other equipment I think.

Mum has capacity and says how much she wants to go home and how much she loves her house all the time.

I think our main concern was that it was definitely insinuated that they could just pick a care home in the city and put Mum in. We would really like some input in to where Mum goes if she does go into a care home. We will be able to pick right? We were certainly given the impression that Mum would be moved next week wherever there was a bed and that’s where she would stay.

I’ve got so many other things to think about right now but this is so stressful

If you don't get involved they can just pick a care home - this would be what happens when no family are involved. Not everywhere has community NHS beds - my locality has none.

So I would strongly advise you or your sister, or someone you trust to try to go and look for care homes as if you say you can't, you will find your mum is placed in one you don't like.

Sadly it really does sound like her time at home has come to an end.

However even though she has rallied, she is still very frail. She can still have palliative care input and I would push for this for decisions about future treatment and support for all of you going through this at the worst time possible.

Roxy, I'm sorry you're going through this esp when so pregnant.

The short answer is they can do what they like. So your job is to be as difficult as possible (from a pregnant distance!), and not let them try and force you into something you believe unsuitable for your mum.

We had this with mine (she died Nov 1) but every single time they said they would discharge her during the last month of her life there would be some other medical crisis. They can pick a care home, you might be OK with it - but if its not offering what you think your mum needs you can refuse it. It would be better by the sounds of it if she went into a NHS community bed. I would also push the palliative care aspect - they choose home X, what makes home X suitable to deliver the care she needs?

They probably can pick a home that they know has vacancies or a community bed, some hospitals have bought carehome beds for delayed discharges but the manager still needs to visit your mum to assess her, make sure she's consented to move and that they can meet her needs, that should be free for 6 weeks. I would push for the palliative care to be reinstated, if she goes home they can refer her to the community team, also get the cops nurse involved, if she needs oxygen that will need to be installed at home. I think a bed downstairs is more help than a stairlift, our mil never used theirs. If she needs carers at home then that needs to be set up, at this time of year help is thin on the ground. If they do find a suitable short term bed ask what it's called, look it up online, your mum has a say in where she goes. All the best for Monday.

Don't know what a cops nurse is, COPD

She has to give consent to moving to a care home. In our area, card homes are pretty much a last resort (unless you can self fund a luxury one). Social Services send people home with a package of care and services first. It doesn't sound like she needs specialist nursing care and there are community copd teams. I'd try that first particularly as she wants to return home.

Thank you all so much. It’s much appreciated. Yes we have been told that if required we can refer back to palliative care in the community.

My sister is definitely of the opinion that she wants Mum to try home care first. She feels that she is now as good as she was prior to her hospital visit so home with care would be manageable.

So when we are next asked about discharge we should say we want home care and to be assessed for equipment and a downstairs bed?

Again thank you all so much for your help and good wishes

When they next talk about discharging mum, say she would like to go home, ask for an o.t. home environmental visit as she is unable to get upstairs and will not use the stairlift. Your mum needs to tell them she wants to go home but will need carers, ask to see if can have reablement again or would she be able to go to a community bed until everything is safe at home. A hospital style bed may be best, they have controls on them so she can sit herself up. The nurses should have done an assessment to see how much care she needs, the max is usually 4 care visits a day, an hour each time at most but that would be something the care agency manager will discuss with the nurses and your mum. The nhs is desperate for beds and mum doesn't want to be in hospital longer than she needs be but don't let them bully you or send her home before she is ready. The final decision is what does your mum want and what will she agree to. Hope it gets sorted soon for you all.

Seriously, has she been seen by the hospital palliative care team?

Or has the ward thought about it and then decided not to?

As a palliative person mostly I see people who should have been referred ages ago. I'd rather see someone myself and say they aren't appropriate than have the ward never make the referral.

On the topic of home - how is home going to be different now to before when it is acknowledged it was 'pretty bad'? I take it that your mum lacks the capacity to make the decision herself. Is she on her own? Is she safe to be on her own? How will carers get in and out? Who will be doing meals? How will she get her medication? You need to think through every aspect before going for the emotional pull of home or alternatively being palmed off with a care package that isn't going to keep her safe and meet her needs.

anna makes an excellent point about the emotional pull of home. Being at home is not necessarily better, in fact it can be a lot worse - my DM managed to fall over between one carer leaving at 9.15 and the next arriving at 11.15...

but if you and family agree that home is the best place, then you need to insist on at OT referral, get all the aids in place before she is discharged. Even if she doesnt want the aids (eg chairs round the loo, grab rails etc) say that you want them - because it is all a delaying tactic. I'm sorry, that sounds brutal, but having spent 5 months listening to people say 'oh we're discharging your mum today, she can walk 20m unaided' and it was all total lies - you have to be pretty kick ass in this situation.

Yolo, you are so right, fil fell getting from the ambulance to the front door so taken straight back in

cheesy I'm sorry, been there, done that, got the t-shirt etc.

You have to look at it this way: the hospital wants the bed for the acute patient. Your relly may no longer fit the bill precisely. But the hospital and SS have a duty of care to provide the BEST option, and you dont have to accept what they offer, you just have to be what Theresa May is proud of - 'a bloody difficult woman'.

Again thank you for all the help. To clarify we were told Mum was dying by the Respiratory Reg and we were looking at days. That they were discontinuing her active treatment (tight mask on Respiratory High Care) as it was not helping and there were no further treatments available. Mum was discharged from the High Care Unit and put on the normal Respiratory ward and made comfortable. Mum spent a few days like this , drifting in and out and seemed very peaceful. Then after about 4 days she just improved. Everyone including the medical team seem very shocked. She was awake and sitting up and eating small amounts even. After a couple of days of this we were then approached to discuss discharge. We were all in shock especially after being told that Mum was dying. I did ask about palliative care and they said the ward had referred her and then cancelled the referral as it was not needed.

To answer a few more questions. Yes Mum would be on her own at home as my Dad died 3 years ago. One of the reasons my sister wants Mum home is that Dad was in a care home for 18 months before he died. However we didn’t have to go through this process as Dad had a stroke and became dependent on full time care overnight practically.

I think there is definitely an emotional pull of keeping Mum at home. She probably would be safer at home. However due to me being far from my home town and having 2 childcare very soon it’s difficult for me to argue with my sister about keeping Mum at home.

There’s lots to think about. I’m adding to my list of questions for the hospital all the time

Sorry to add. Mum would probably be safer in a care home not at home

I would say she does need a palliative care referral - they aren't just for the last days of life, but for people with lots of symptoms in the last year of life. Your mum is definitely in this category. I see this from wards all the time. Ask for it again.

I think the palliative care team would be able to support you and your sister with this as the whole situation has clearly blindsided you both.

I also think, from what you have said that your mum would be safer in a care home - the hospital haven't suggested this for no reason but they haven't explained it to you or your sister well at all. They need to go through will you why they think she is dependent on care.

There are other issues about advance care planning that you also need the palliative care team for.

Has/will she agreed to home care?

I don't know the legalities (im GC not child) but as no one has financial or any other power of attorney for my gran she has refused carers and she in within her rights to do so.

As it is me and my mam can manage care between us but I have no idea what will happen when we can't manage. Sorry your in this position:

Mum would not agree to a care home but I imagine very few people would. Mum is adamant she wants to go home but I agree that we need what is safest. Especially with me being out of action for realistically the next couple of months.

I’ll definitely chase palliative care. Thank you so much for that. Mum does have symptoms that need management. Breathlessness and anxiety being the main ones

I would find her a place in a care home as she will have 24hr support. What if something happens when she is alone. I've seen people driven to breaking point because an elderly family member is at home and needing more support.

Has your mum had a formal capacity assessment done, she needs to agree to move into a carehome and to pay for it. If she has capacity it could be difficult to over ride her wishes, maybe the doctor could speak to her to ask what she would like to do and see how much she understands about her illness and what help she will need.