How on earth do I deal with this??

[Shedrech]

I don't disagree with canary, should it come to your dad actually getting back home @CardiffGirlInEssex
what I was suggesting is that no-one helps with the pre move organisation so your dad cannot go home .... if only your mum is at home to (not) move furniture and 'take delivery' of the hospital bed etc then I take it your mum will refuse to accept any of this and the move back home cannot take place .... though this does assume (possibly foolishly) that the discharge won't take place if the house isn't ready
maybe contact the PALS at the hospital to see if they can help, as they know hospital procedures

 

[canary]

what I was suggesting is that no-one helps with the pre move organisation so your dad cannot go home

Ah, I see. Yes, good idea.

 

[CardiffGirlInEssex]

Unfortunately my fear is that the discharge would then go ahead with no equipment in place and therefore no care able to be given, the distress it would cause to my father to arrive home and find that doesn’t bear thinking about. I will see how things are this week when I am actually there, I am getting an angry phone call every day but things could be either better or worse in person, no way of telling.

I will be speaking to the social worker again on Monday and basically begging for the decision to be reconsidered safety grounds, but I’m not hopeful it will be. Not least because COVID is a big issue in all the local care homes at present so hardly any will take new residents. There will be others in much more dire circumstances fighting for the few available LA funded places.

 

[Weasell]

If dad arrives home I would be taking photos of his pressure areas.
If he gets no support through the night, and chooses to open his bowels after the evening carers depart he is going to get sore very quickly.
If I found any safeguarding issues and was not happy with the quality of response, then I would find out who was the safeguarding lead for my area and contact them.
I would explain I felt I was not communicating well and request their help/support.

 

[CardiffGirlInEssex]

If dad arrives home I would be taking photos of his pressure areas.
If he gets no support through the night, and chooses to open his bowels after the evening carers depart he is going to get sore very quickly.
If I found any safeguarding issues and was not happy with the quality of response, then I would find out who was the safeguarding lead for my area and contact them.
I would explain I felt I was not communicating well and request their help/support.

That’s a useful suggestion @Weasell, thank you

 

[CardiffGirlInEssex]

Well, I had a bit of a lightbulb moment this morning, shortly after a complete meltdown on receiving a call before 9.30am from mum. The call was about something completely different and easily dealt with, but the overwhelming anxiety and fear on seeing her name on the screen was just unbelievable and I was a sobbing wreck for about half an hour.

Anyway, shortly after that I thought....why I am working so hard, and causing so much upset to us all, to do what the occupational therapist and social worker think is right for them and the carers, instead of what might work better for both my parents? Not a care home (sadly lack of funds mean that's out of the question) but arranging for him to be the downstairs room that Mum wants him to be in. It isn't ideal, but it shouldn't be impossible either. It would deal with her two biggest issues - that she doesn't want him in the 'best room' because it will make a mess, and that if he was in the 'best room' she wouldn't be able to do anything to help look after him, in particular get him a hot drink, because she wouldn't be able to carry it there. If he goes where she wants him to, she can push it to him on his trolley. I wish I could communicate this with her by phone, but she cannot hear me at all! So I have written a new letter and emailed it to dad's cousin so she can print it and give it to mum tomorrow.

On the plus side, there does now seem to be an acceptance that a hospital bed is what's needed, her call today was more about how there was no reason it shouldn't fit in the space where she thinks it should go.

So I think I will see what reaction there is tomorrow, to the letter, in which I have straight out apologised for not ensuring she was listened to, and take it from there.

Thanks to all for your support, I shall update after the visit!

 

[lollyc]

I have had experience of a 4x daily care package, post hospital discharge. I was able / wiling to deal with Mum between care visits, but I cannot see how this sole level of care is sufficient for someone who is bedbound. Obviously your dad is not hampered by dementia, so can understand that he will have to wait for carers to arrive, something my Mum simply couldn't grasp. She wanted them here .. now! Something that caused her a lot of distress, and may worry your mum, is that they arrived at, to her, very variable times. If she could use a phone, she would have been ringing them all the time! No amount of me telling her what time they were coming made any difference.

 

[CardiffGirlInEssex]

I have had experience of a 4x daily care package, post hospital discharge. I was able / wiling to deal with Mum between care visits, but I cannot see how this sole level of care is sufficient for someone who is bedbound. Obviously your dad is not hampered by dementia, so can understand that he will have to wait for carers to arrive, something my Mum simply couldn't grasp. She wanted them here .. now! Something that caused her a lot of distress, and may worry your mum, is that they arrived at, to her, very variable times. If she could use a phone, she would have been ringing them all the time! No amount of me telling her what time they were coming made any difference.

I am concerned about the adequacy of the care visits and the likely variable timings, but unfortunately we are between a rock and a hard place with this unless I'm the big winner on the Premium Bonds this month. We are compelled to try this and only if it fails will a care home be considered an option. At least Dad does not have dementia, but patience is not one of his virtues...and he hates lateness, being ex army!

 

[Palerider]

I am concerned about the adequacy of the care visits and the likely variable timings, but unfortunately we are between a rock and a hard place with this unless I'm the big winner on the Premium Bonds this month. We are compelled to try this and only if it fails will a care home be considered an option. At least Dad does not have dementia, but patience is not one of his virtues...and he hates lateness, being ex army!

I empathise my dad was ex-navy and he was just the same, equally he found it hard to cope with mum in the early stages, God knows how things would have been if was still alive and unwell having survived his return of cancer thus far. Its a tough one to deal with but I can completely understand how this must feel for your dad, your mum who has no insight and you. Hoping some decisions are made sooner rather than later x

 

[MarleysMum]

You are in such a difficult situation and there are no easy answers. i Just wanted you to that I’m thinking of you. Take care x

 

[CardiffGirlInEssex]

So...here I am, at the house with Mum. Dad's hospital bed, hoist and commode due to arrive tomorrow, got a whole load of furniture and junk to shift. Occupational Therapist rang, she doesn't think the room will work, she is coming tomorrow to see the space again and be here when stuff arrives. She is going to have to deal with mum if they want to change this plan. I just can't deal with that.

Still no care package sorted for Dad, no copy of the care plan despite numerous requests. I think Social Services are struggling to find a care company that can take it on but they won't tell me what happens if they don't get that sorted. In the meantime dad is very stressed about the whole toileting problem and I'm not happy at the dismissive way he seems to have been told that he'll just have to use the incontinence pad.

Just the three screaming sessions with Mum so far! More tomorrow, I expect.

On the plus side, I will be able to visit Dad in hospital for 30 minutes tomorrow afternoon, in mask, gloves and apron and at 2m distance. But at least I will see him and we can talk.

 

[canary]

I think the OT is going to have a rude awakening tomorrow...........


Id just let her get on with it.
maybe dont be there when it all arrives

 

[Sarasa]

@CardiffGirlInEssex, what a total nightmare. I hope someone realises this really isn't going to be in anyone 's best interests before your dad comes home.

 

[CardiffGirlInEssex]

@CardiffGirlInEssex, what a total nightmare. I hope someone realises this really isn't going to be in anyone 's best interests before your dad comes home.

Sadly there is no money to pay for a care home place, which is what dad wants. Social Services here are absolutely wedded to the concept of home first and best, especially if they are the ones paying the care costs, which they are. We have tried everything including all the buzzwords, but no dice. My best hope now is that no company will take on his care package so he has to go to a care home even if temporarily.

 

[Sarasa]

I think if they try to send him home without a care package your going to have to escalate things. What’s the local MO like?

 

[CardiffGirlInEssex]

I think if they try to send him home without a care package your going to have to escalate things. What’s the local MO like?

I dont think they will send him without the care package. If they can't organise the care, they will have to find him a care home place instead, which would mean all this distress and upheaval for mum will have been for nothing.

 

[canary]

OTs have the final say on whether someone can be discharged home.
If this OT sees your mums distress and what it would really be like at home she may say that it would be an unsafe discharge.

 

[CardiffGirlInEssex]

OTs have the final say on whether someone can be discharged home.
If this OT sees your mums distress and what it would really be like at home she may say that it would be an unsafe discharge.

Well, the OTs have seen mum and don't seem to think it's a problem. The bed and so on has been delivered and squeezed into the room she will accept it being in. There was talk of moving some more items but I'm not doing anything about that. They can sort it out when I'm not there.

Waiting to go in to see Dad, hope he's more cheerful than mum!

 

[canary]

Well, the OTs have seen mum and don't seem to think it's a problem.

Sounds like she was in hostess mode ☹️ [sigh]

 

[CardiffGirlInEssex]

Sounds like she was in hostess mode ☹️ [sigh]

Yes, she does a spectacularly good hostess mode! And it was definitely on display.

She had a couple of hours at home alone with the new arrangement of the room this afternoon and seems to be coming to terms with it a bit. She is exhausted this evening, went upstairs by 6.30pm and slept for a couple of hours, then thought it must be morning and wanted to know where her breakfast was because 8.30 was late for breakfast! She’s settled again now, I hope she has a better night than she says she did last night.
Dad was ok-ish, very apprehensive about going home still. I’m hoping it will settle down ok eventually but it will probably be a rocky start. Still waiting for the care package though...