Mum might be home today - I’m nervous!

[Metalpetal]

So after a false start last week, the hospital indicated that they might be happy for mum to go home as early as today. They’d hoped for last Friday, but then the Consultant Psychiatrist decided he wanted her in for a few more days (we’re not sure why). Her house is ready for her - handles/railings fitted, personal alarm installed, toilet frames, gas cooker ‘blocked’. And we’ve been assured a full care package of four visits a day is in place, at least initially.

But I’m still so nervous at the thought of her being home and ‘fending for herself’ outside of those 4 care visits each day! I think the fact that I’m 400 miles away isn‘t helping, I have to sort of let it all unfurl at a distance. And I know we have to give this a go - we owe it to her to see if she’ll be ok at home, and she’s so very desperate to get back to her cat, sofa and tv!

Anyway, time will tell - and whatever happens, we’ll deal with it. Worst case (hopefully) is we quickly realise it’s not working out and we have to move fast with a care home. Best case - she could be absolutely fine! And that once she’s out of hospital her symptoms settle nicely. I suspect it’ll be somewhere between the two ;-)

You all have your own worries to keep you occupied, but if you have a spare few seconds to send good luck vibes our way, it’d be much appreciated! Thanks.

 

[Grannie G]

Being 400 miles away @Metalpetal is really tough for you.

I send all the positive vibes I have, hoping your mum will be able to manage by herself with the carers.

Will they contact you if they have cause for concern?

 

[canary]

I hope all goes well
xxx

 

[Metalpetal]

Being 400 miles away @Metalpetal is really tough for you.

I send all the positive vibes I have, hoping your mum will be able to manage by herself with the carers.

Will they contact you if they have cause for concern?

Well that’s a battle I have today before we ‘let’ them discharge her! We still haven’t got names/contact details/agency details for the carers - which seems like a fair thing for us to be asking for! And I want to know that they have OUR details and will call us if anything isn’t right. The hospital aren’t being very forthcoming (we’ll push hard for that today) but I’m planning to call the council care assessment place this morning to explain to them and see if they have mum in their system and can reassure me. If mum wasn’t in hospital, that place is who we’d be going through to get care put in place. So I’m assuming they’re still in the loop somehow...

 

[Metalpetal]

I hope all goes well
xxx

Thank you @canary

 

[Dimpsy]

You've covered all the bases and your mum will be so pleased to be home, sending best wishes for a positive outcome xx

 

[Sarasa]

Hi @Metalpetal. I hope it all goes as smoothly as it can. A good idea to flag this up to the council, as they should have extra plans in place during this crisis. Mine for instance has lots of volunteers phoning people isolated up to check on them and have a chat.
I think if it isn't going to work, it'll probably happen quite quickly. Do you have a care home lined up just in case?

 

[annielou]

Sending lots of good vibes and positive wishes ?? I hope you get all the contact info you need today x
Just a thought, and I'm probably wrong and it's just because hospital are busy and not keeping you in loop because pushing ahead to get things organised. But maybe the hospital don't have mums permission to speak to you about her care plan. Either they haven't asked her, or they maybe asked in a way your mum didn't understand that they meant her family.
When we asked SS to come to assess mum the SW (not hospital one) told mum they had to ask her if she was happy for them to disclose her information and what they talked about at assessment to other people. Mum said No she didn't want people knowing, SW then explained a bit better and said was she happy for me to be there and me and my sister and her drs to know and mum said yes to that.
SW told us that mum is their client and unless she says its ok to talk to us she can't tell us anything. Any arrangements are between them and mum, unless we had LPA's. She said they do normally try to take families views in to account but they are there to help mum not us. They had to have mum agree to any care package they put in place, not us unless mum had lost capacity. If mum refused package at any time and they thought she was fit to decide that then they would do what she requested and stop it no matter what we said and didn't need to inform us.
It may be worth asking when talking to hospital why they're not telling you, is it because they think your mum might not want you to know and if it is ask them to ask her so she knows they are talking about you.
It could be a silly suggestion but I thought of it because a few years ago the mum of a former colleague of my husband went in hospital, she visited her everyday, spoke to dr while there and met with SW while there too, then she turned up at hospital for visiting one day to find her mum had been discharged and they hadn't let her know as her mum had told them not to tell her. When she got home she had an answerphone message from her mum asking why she hadn't been to pick her up from hospital and she'd had to come home in a hospital ambulance and could she pop round with some cigs. When she went to see her her mum said she hadn't understood they meant her family when asked if they could inform people of her discharge, she'd thought they meant her neighbours and she'd fallen out with them so didn't want them to know.
Hopefully that's not case for you and hospital will let you know all you should today. I hope mum will come home and her care package work and she is happy and settles back in her home x??.

 

[Metalpetal]

Sending lots of good vibes and positive wishes ?? I hope you get all the contact info you need today x
Just a thought, and I'm probably wrong and it's just because hospital are busy and not keeping you in loop because pushing ahead to get things organised. But maybe the hospital don't have mums permission to speak to you about her care plan. Either they haven't asked her, or they maybe asked in a way your mum didn't understand that they meant her family.

Hi @annielou thanks for your reply My brother and I have got Power of Attorney for mum, so I don't think it's that. But it was a very good point and it could absolutely have been the case if we didn't have our attorney status recognised by the hospital. I do think it's perhaps because they're quite busy... but also, curiously, they don't seem to have much experience of this whole 'being diagnosed with dementia while in hospital' situation! It seems most people are already diagnosed when they are hospitalised there. When I asked the doctor's advice as to whether we should tell mum her diagnosis or not, based on what she's done with other patients, she told us she's never had to tell anyone before! I guess it's rare that this type of 'acute situation' happens, leading to prolonged hospital stay and diagnosis while in their care? That seems to be why they're surprised when we want to know stuff!

 

[Banjomansmate]

Who is paying for the care package? When The Banjoman was sent home from hospital the first time, Social Services sent in their Emergency Care team for the first few weeks until a Care Package with a care company had been agreed and approved. The Local Authority was going to be paying a major part of the cost.
Even though I had LPA The Banjoman was always asked if he was happy for any information to be discussed with me either by SS , GP , other medics or Care company. At that time he was considered to have capacity to make his own decisions even though he hadn’t a clue sometimes!
If there are quite few alterations and additions to your Mum’s property don’t be surprised if she thinks she has not come back to her own home. She will already be confused after being in hospital and any changes will be hard for her to understand and accept.
i would suggest that you start to seriously look at residential care places because there is every chance she could deteriorate quicker than you might hope and expect.

 

[Amelie5a]

I think you're right to get on to the council assessment centre. I'm assuming they have already assessed your Mum as requiring 4 care visits daily? Just asking as there can sometimes be dis-connect between hospital and care management.

The usual process is to put someone's care needs ' out to tender' (for want of a better description) and it's up to an agency to respond, accepting the contract. (At least that's how it worked with Dad when he was at home). It may be that there's a delay there, given you haven't yet been told which agency.

So I'd certainly clarify with your Mum's care management team that an agency has been appointed and that they are ready to start, before your Mum leaves hospital.

I would also ask if your Mum has been given a dedicated care manager, so that you can deal direct with him/her.

 

[Metalpetal]

Hi everyone thanks for your comments and best wishes for mum. Long story short, we heard a short time ago that she WON'T be home today... indeed they want to keep her in for another couple of weeks at least. Poor mum! I'm about to make a new post to explain a bit more and ask another question!! So if you're interested, look out for that

 

[Metalpetal]

Hi @Banjomansmate and @Amelie5a - thanks for your comments. Mum is in Scotland where, thankfully, personal care is covered completely free of charge by her local council. Hurrah for the Scottish government! (in this respect anyway)

So it's all coordinated through a personal care department in mum's local council - who I did indeed call this morning. I spoke to a lovely friendly lady who reassured me that mum is in their system, but no care referral has been made to them yet. She suspected (as I later had confirmed) that this was because her discharge wasn't confirmed yet. They only request a referral when a firm date has been set. But mum is in their system, and the lady could see all the Occ Health stuff that's been happening to get her house ready for her.

So fingers crossed, all will be okay. And this lovely lady said I'm welcome to call again once mum's home if I have any questions about her care package etc.

While I'm on the subject of care... her Consultant did 'warn' us earlier that we have a battle on our hands once mum's home! In that, she's so good at very convincingly assuring people she's absolutely fine! He said he can absolutely see through it but he fears that the carers might take her word for it. So I'll be stressing this VERY clearly to them up front!