Not sure where to begin to get support

[ThisGutsyTurtle]

Hello, my mum is 81 years old and was widowed 12 years ago. In that time she has lived alone with declining health (Stage 4 kidney disease, advanced rheumatoid disease, heart disease and high blood pressure). She has osteo arthritis and osteoporosis too and really needs her hips replaced.

In July she fell at home and acquired 2 raymi fractures (stable fractures of her pelvis) which seriously impacted her mobility further (it was already limited to 15metres - this fall reduced it to 2 or 3 metres) then this weekend she had a heart attack on the Friday and broke her toe during her collapse. She was discharged last night with a sick bowl. The doctor said her heart is causing the vomiting.

In July the OT at the hospital said they would arrange a care package for mum (4 x daily visits as her mobility was poor following the fall and 2 fractures). It never materialised and I wasn't sure if mum had refused/turned it down. She says she hasn't but has taken to telling lies and forgetting things.

I suspect dementia is also in the mix. She is very forgetful, forgetting her name once, forgetting she had a stent put in a few years ago, getting angry, for example, that she wasn't invited to my wedding (she was and attended and we get on well so that would never have happened).

My friend's mum also had a heart attack at the same time and was in the same hospital. My friend's mum has been discharged with 4 x daily carer visits whilst we haven't.

I'm not sure how to proceed. I called social services - the local number is now out of service and callers are directed to an online form. When assessing the details I put in (on her behalf) - the suggestions for dressing, feeding, toileting are to "ask a family member or friend to help"

I live 40 minutes from her. I'm a single parent and have a teen with pretty complex ASN. (or I find them complex) Her DS lives 2000 miles away. She has no other family.

I also suggested getting her one of those emergency cords you wear and press the button for assistance if she falls again - she's not keen. I looked up the details today and I see that a keyholder is required - someone on call and available within 45 mins day or night. I cannot imagine who that would be. I could say it was me....but if I'm at work I would not be reachable.

If anyone has experienced something similar and was able to get support for their parent I'd be grateful if you would add it here.

Your poor mum, I am so sorry she sounds terribly unwell. And poor you too as v stressful. When she was discharged were you there? It sounds like an unsafe discharge. AgeUk may be able to help

https://www.ageuk.org.uk/siteassets/documents/factsheets/fs37_hospital_discharge_fcs.pdf

What a nightmare for you.

Put in a safeguarding report for your mum - google her county council + adult safeguarding. Explain that she is at risk of harm and has been discharged with no care package. There should be a phone number for this as well as online access.

Make it clear from the beginning that you are not able to provide any active hands-on care yourself. However, it's inevitable you're going to have to get involved with some things that she can't manage for herself.

Do you know her financial status? Does she have savings over £23,000?

Do you have POA for her?

The falls alarms are used to not having someone on hand - you would be primary contact but would not be expected to rush over and deal with things like falls immediately. Most people have a key safe so emergency services or falls teams can get to your mum if something happens.

I'm guessing it's unlikely she will trot off to the GP and ask for a dementia assessment? In which case you can try to encourage her to go to get a checkup after her hospital visit AND in the meantime contact her gp to say you are concerned about her memory (they won't be able to discuss this with you but the information is there).

And if all else fails, then I'm afraid there will come a moment of crisis from which things will have to change. Sometimes you just have to be prepared for that to happen.

Thanks Tagalogalog. I don't know how to reply to you here but hopefully you see this. (this is my first post and I haven't learned this stuff yet!)
It is super stressful and I won't be the first to experience this. I wasn't present for the hospital discharge. I was told that she would be moved to a smaller more local hospital last night. The plan was to access physiotherapy in the local hospital today (Monday) and then possibly be discharged. I planned to be available for that - so long as I was told the time.

So she was discharged last night and put in a taxi with a sick bowl.

I've just spoken to the ward, the nurse who answered checked her notes; she told me that she, herself, wasn't on at the weekend but thought she should have been asked if she'd cope at home.

To be fair to them, they might well have asked her - she would have said yes. All she cares about is being at home. (I can understand that - she is 81 and shields at home from covid and of course prefers her home comforts to those of hospital)

I’m a little bit confused. Is your mum now back at home, or has she been transferred to a rehab hospital?

OTs don't organise care packages, social care do. It's very likely your mum declined and was deemed to have capacity.
Regarding the forms, my LA doesn't have forms for intial enquiries but I would think 'asking family to help" means in the short term not as a forever solution.

If she is now home, ignore the suggestions on the online form that help could be obtained from informal carers and complete it as an urgent referral requesting an assessment of her needs under the Care Act.
But a word of warning, she is at liberty to refuse an assessment and as @olderbutwiser has said, you may have to wait for another crisis for her to accept the idea she may need help.

You could phone her GP and say how unsatisfactory it is for her to have been sent home alone with no care in place. See what they say but my feistily independent mother in law's surgery were very good and someone maybe a district nurse came out to discuss options with her. Sadly she remained determined to be independent. We paid for an emergency pendant for her which we thought she was wearing but one day she was found in her bathroom after a fall two days before and there was no sign of her pendant. As others have said it is often a crisis that instigates proper care when they are unable to leave hospital without it

It definitely sounds like she has dementia. And she could well have told the hospital she would cope fine at home (and/or you would be there to help). And you are a bit stuck, because it sounds like she has no diagnosis of dementia, and you do not have LPA, so you cannot make decisions on her behalf.

If you mother keeps turning away help, there will be little you can do. While she is deemed capable of making her own decisions, she can carry on making bad ones which put her at risk.

Your first port of call would be Adult Social Services, but you don't seem to be able to get in touch with them. You could try the GP, but they will not be prepared to discuss her with you unless she gives permission. As others have said, you may have to wait for another crisis.

Re the pendant, it is vanishingly unlikely your mother will wear it unfortunately.

What a mess

No one should be discharged from hospital on a Sunday night with a vomit bowl and no home care set up.
Even during COVID my Dad was sent home with a 4 week package, initially twice a day reducing to once a day.

Contact the hospital again - (sorry, I know the waiting on the line), ask to speak to the Discharge team (it may have another name, but it's the team who arrange post discharge support) and tell them your Mum is the subject of an unsafe discharge and she needs ongoing rehab and suppport or she'll be bouncing back into A&E in the next few days.

There'll be a phone number for oncall social services and say the same to them - the important buzz words are 'unsafe discharge'.

Now it may well be your Mum has told them she can cope with your support - both she and social services need to be told in no uncertain terms that this is a non starter, and whilst you're perfectly happy to call in for a cup of tea and a slice of cake, every other Sunday afternoon, full on care and daily visits are out of the question as you have a child with complex ASD needs.

And yes forget the emergency cords - those who really need never seem to wear them.

Sorry to say it is very common for elderly relatives to resist, deny and turn down your strenuous efforts to get external help for them, whilst also wanting you to be able to provide any help they need despite your own life commitments, travel distance etc. I guess there are reasons around trust/pride/fear and who knows I might be just the same one day? We've had this with 4 sets of parents in my immediate family over the last 5 years.

It usually takes quite a crisis such as a severe fall or accident and hospital admission to get the care in place. But as pp said, the person can deny assistance, in fact there is nothing to stop people living in extremely dangerous situations and some would rather do this than accept help from "strangers" or stay in the unfamiliar environment of hospital. Even if it has serious health implications or they die earlier as a consequence. It's their choice.

A couple of things you might try:

• Get the LPA paperwork done "just in case" whilst your mum still has capacity to do it.

Then you can act on her behalf more easily when the time comes.

• if she goes into hospital again, try and get contact details of the discharge coordinator so you can tell them she will exaggerate the support she has at home - it might make a difference.

You also need to stop helping (if you are) and effectively let things get worse enough to create space for other carers. This is much easier to say than do!

Thanks olderbutwiser - I do have a POA for her. I rang her GP as they have that documentation (I gave it a few weeks ago). They told me to ring the discharging hospital and just done that.

The nurse i spoke to was not on at the weekend but thought it unusual that she was discharged without an OT consultation.

A few minutes later the OT rang and said that she was deemed fit to be discharged as she could walk (albeit slowly) from her bed to the toilet. So perhaps that's the level and I was expecting too much.

She has savings over the amount you mentioned in her bank.

You're right - she is not willing to be assessment for memory loss - she's very defensive/angry about it - that's only something I raise tentatively with her.

As she has money to pay for care, and you have LPA, you can use an agency to arrange care visits for her. I used Home Instead.

Hi Juliejuly - my mum had her heart attack on Friday and was sent home late Sunday evening with a sick bowl. On the plus side, the hospital has now said that cardiology out patients will send her an appointment in a few weeks

Thanks NotMeNoNo - I do have power of attorney for my mum - she did that in 2021. I didn't know anything about it until paperwork arrived for signing during covid. I will read into what this enables. At the moment I know I can speak to her GP with this and they can speak freely back.

That sounds pretty tough with both your parents and your inlaws. It's not easy being this sandwich generation. My dad passed 12 years ago so over here, in this family, it's all be a bit more spaced out.

Thanks for the tip about speaking to the discharge coordinator. I will certainly be 'on it' next time. As it was, I was told she was being transferred to a local hospital but then suddenly she was sent home. Her breathing is very poor and she told me today that they mentioned heart failure.

Thanks @Cheese55 - that's a useful clarification. I haven't been clear on who does what. The GP suggested that the OT would arrange - or perhaps they meant they would flag to the appropriate team.

I think you are right that she likely said she didn't need support

Oh that's awful @AnnieMay55 - So sorry to hear that; your poor MIL. My mum is resistant to these emergency pendants but at the moment, I'm her only contact in the country. Her DS is in the US (he emigrated). But what's happened a few times now is a voicemail that goes on for a few minutes of her begging for help. It's awful to think of her being that alone and leaving a message and not calling 999 herself.

Where I work, I have no access to my phone for most of the daytime. Just short breaks of a few minutes between seeing clients. So....I'm hopeful that surely this time she will be willing.

Thanks @DPotter I'm not long off the phone to the hospital - they say that she was deemed fit to be discharged by the physio who saw her Sunday afternoon. She's a very determined 81 year old lady. He told he she could go home if she could get out of bed and go to the toilet. (3 metres away)

They said that now she's in the community and discharged they can't help me further and I need to go through her GP.

I will call them tomorrow.

I’m really sorry, this sounds like you’re on a long path with lots of twists and turns to look forward to.
To be positive, she sounds determined and mobile enough and you have POA so can initiate assessments and advocate for her.
Is there any way you could take compassionate leave and stay for a few days? Could your DC go to their dad or to a family friend?

Unfortunately not @Juliejuly; they choose not to be in contact with their father and have not been since they were 13. They have ASN including POTS, AuDHD, OCD and cannot settle anywhere but their home. I don't have anyone I could ask to stay. I would struggle financially to stop working myself - I'm self employed and see clients each day, many of whom are going through their own crises/are suicidal etc. I really do feel I need to support them as well as mum and my teen.

I'm just off a video call with mum and she says she's retching constantly but otherwise says she is ok.

She also told me that the hospital rang her today - but she can't recall what they said (or who it was) other than they wanted to check she was 'ok' as she was discharged suddenly. I assume she told them she was fine but she couldn't elaborate/articulate what her answer was.

Gosh I really feel for you. I’m concerned we are heading in a similar direction with one of my parents, and I’ve seen how it can go with their elderly neighbours too. One thing I can suggest which may provide a small bit of peace of mind: if she won’t wear the pendant, you could install an Alexa or two at her house and set it up so that if she has a fall she can say “Alexa, call @ThisGutsyTurtle“ or I think you can also get it to call 999. Then at least she wouldn’t be stuck on the floor for 2 days.

Unfortunately, as others have said, sometimes things have to get worse by way of a serious fall or other incident in order for a care package to be forced upon the person. I’m so sorry.

Thanks @Elektra1 - That's a great idea. She had super fast broadband installed recently. I could easily get her a couple of those Amazon gadgets. I will check into this.

In my mum's case, she's had a serious fall in july breaking 2 bones (2 raymi fractures) and a displaced clavicle actually as well now I think of it....and now a heart attack. She had a heart attack in 2013 too just after my dad died.

This getting older business is scary and it feels like I'm having to look around to find out what is available for her.

As another poster said, @olderbutwiser I think - I do already get involved, doing her shopping, batch cooking for her when I have a chance, cleaning and washing. I visit every week. I just can't do daily/more than maybe twice a week.

My teen really suffered when I rushed out on Friday (after calling the ambulance) and I was not back until nearly 10pm. They had food (lots of options) but felt too poorly with their POTS and CFS to get up and grab something

Thanks for all your inputs. Mum was admitted back to hospital last night. I flagged Sunday's unsafe discharge. She went back in as her EFGR reading was 15 (stage 4 into stage 5 kidney disease). Once out (if getting out) I will proceed with all the good suggestions.

Thanks everyone.

How’s your mum doing?

Hi @Juliejuly my mum passed away on the 15th October. She was readmitted on the Tuesday the week earlier (I took her in when her kidney EFGR reading plummeted to 15) - from there the realised the meds for her heart attack were hammering her kidneys. She continued to deteriorate and eventually had a flash pulmonary oedema.