Another crisis and not sure i can manage this one

[whataboutbob]

Went to visit Dad yesterday. In brief, 2 weeks ago he had a fall when his carers helped him out of the bath (I had requested a bath assessment and bath chair 2 months ago, it didn't happen). He now cannot walk up the stairs, does not leave the house, is doubly incontinent and in pads, and barely speaking anymore). he had been declining prior to the fall but now his state is quite shocking. he's on the living room sofa bed all day, and has the beginnings of a pressure sore.
The washing machine is broken. There was a pile of urine and faeces soiled clothes and bedding on a heap in the kitchen.
My brother is in full on denial mode and just thinks dad is going to continue living at home.
To cap things off Dad's rental flat has flooding because a cowboy builder did not waterproof the new shower, I have got a plumber in he has completely removed the shower and it will take 2 weeks to reinstate because we are waiting on a carpenter, a wall is waterlogged and needs to come down, a new one needs to be built to support the new shower. Will cost at least £1500 to put right and tenants will want compensation for 2 weeks without washing facility.
I have been signed off work for 2 weeks because my blood pressure was dangerously high (also work related stress going on).
I rang a cousin who's a GP and he thinks Dad may have a subdural hematoma, a slow venous bleed around the brain which is impacting his functioning. Only way to know for sure is a brain scan.
All I could do yesterday was go to rental flat to pacify tenants, go to laundrette and wash the stinking pile of stuff, and spend time with Dad and bro.
ICT are delivering a hospital bed, no idea where it will go, Dad was a hoarder, bro is a hoarder, the living room is a hovel and the carpet smells of piss and poo.
Just feel totally overwhelmed and minded to let the professionals deal with it now as i am too weak to take it all on. I have been signed off work for 2 weeks because my blood pressure was dangerously high (also work related stress going on).
I know I should:
Hire a van and do the much needed garage clear out (ignoring my brother's protests as i go along)
Clear assorted junk out of living room
Shift sofa bed into garage
Get on GPs case to get Dad's brain scanned
Attend crisis meeting to weigh up options for Dad's care: respite/ nursing home/ stay at home in micro environment
Chase up incontinence nurse referral, if indeed the referral was made, as I have discovered i can never assume people do what they are supposed to do
Find out why the bath assessment never happened and who is responsible
Get onto council: the wheelie bin has disappeared
Negociate with my manager a further 2 weeks' unpaid leave
Attend meeting with CCG Dad's continuing healhtcare funding is under review in 1 week.
BUT can't face any of it. I feel utterly done in.

Oh Bob I am sorry. If the gp has signed you off they are still concerned about you.
Is there someone who could help sort? An independent voice could help? Stuff has so much in terms of associations etc and it is so hard. Do whatever you can to make it easier- just do the essentials. Look after yourself. How are you feeling?

Bob there's a lot all wrapped together there. I'm sorry you're feeling low but if you step back and look at it quite objectively I think it would take a miracle not to in the circumstances, I'm really glad your GP has signed you off and as thesandwich says, that does mean they are concerned about you. You're having a very normal reaction to a very difficult situation and your body and mind are sensibly saying that's enough now.

I'm playing devil's advocate here a bit but think at this point when you are signed off with high blood pressure and feeling pretty low you need to ask yourself whether you are actually medically well enough to do any clearance or organisation at the moment ? If I had to guess at what you'd say to that I suspect you'll say no you're not but you have to as it needs to be done and there's no one else to do it. I could be way off with this and apologise hugely in advance for putting words into your mouth but am worried about the enormous pressure you're under right now

SPT you might be putting words into my mouth but they are accurate! That is how I feel. This time of year is difficult too because exactly 21 years ago mum went into hospital with a brain haemorrhage and died 2 days later. Frankly I loved my mum a lot more uncomplicatedly than I love my Dad.
I have been a lot more passive than during the previous crises so if things evolve in such a way that Dad does not come home I will not be devastated. I just worry that my brother will be another albatross around my neck. The last one in the chain. Sorry this is all a bit gloomy.
SPT I read your posts on the main thread. Everything you struggled with and discovered about your mum and her illness is being abundantly expressed over in thailand. Do you think your bro could benefit from counseling, then making sure your mum is cared for and trying to keep some distance?
Sandwich, how are your oldies?

If your dad is CHC funded then it is the responsibility of the CCG not you to find him a placement if he cannot return home. It is also their responsibility to manage any discharge from hospital. If the hospital ring you again tell them that as he is CHC funded all discharge decisions must go via the CHC.

I'm so very sorry about your Mum If you aren't well and can't do it then someone else will step in and do it as they would in cases where someone has no family. I think it's really important for your sake and the sake of your DC's that you continue to be passive and gradually recover your strength. I didn't know that about the CHC but it sounds as if saying that is the way forward.

Fully get your worries about your Brother and think that's another reason why it's important for you to remain passive in this. You don't have to pay for your Dad's reluctance to face up to your Brother's issues for years. It's not as if you're doing nothing, you've been sorting the flat issue which is stress enough on its own.

I did mention counselling to my Brother but he said he doesn't need it. He is definitely emotionally detaching now and is prepared to hear a few of the things I found out from my Aunt and old letters whereas previously he said he didn't want to know. It's been a bit of a difficult weekend in a way as have been doing Christmas with Dad and Stepmum. It's been lovely but situation in Thailand has brought things back fir DH about his Dad and DD has been upset about FIL and my Mother. We're just going to be the 4 of us for Christmas and I am really looking forward to pulling up the drawbridge so to speak.

Hi Bob. SPT speaks sense- listen to her! Please take it easy. You have done so much.
My oldies- stable thank you! Fil in a care home where they look after him well- he is paralysed down one side but appreciates visitors. Dm is stable- in some pain but does get pleasure from trips to the garden centre, etc. Brothers continue to be useless... So all calm touch wood. I am trying to limit what I do- and put myself and dd first. Take care.

SPT I understand where you are coming from. I think if there are difficult issues in families (and let's be honest most families probably have issues) they tend to rise to the surface at this time of year. Frankly I don't like Christmas! Good to hear you are planning an uncomplicated one. If Dad isn't out of hospital I'll invite bro, as long as DH agrees.He tends to shoot off home via National Express on boxing day so it should be OK. I am definitely now going there as i did last year, and ended up spending most of Christmas day cleaning unspeakable stuff off the walls.
Hatgirl thanks for pointing this out re CHC and the CCGs obligations. I didn't know that. I am re engaging with the CCG because they are re assessing Dad next week and i need to be there, as I'm sure they'd like an opportunity to stop funding him.
Sandwich thanks so much for your ongoing words of support. I hope you too have a lovely Christmas and it's good to hear your mum still enjoys quality of life with her outings.

You definitely need a calmer Christmas Day Bob I'm starting to like it a bit more now it can be a day of just chilling and not meeting other's expectations.

Is is still quiet on the hospital front ?

Well I visited Dad hospital yesterday, as expected he's in an elderly ward, with 5 other gentlemen in his bay. His professional carer was there indeed they have been there all day since his admission, hence i think the hospital being a little less desperate for him to be discharged. He was quite calm but his new state is really quite a downturn. He cannot stand let alone walk, he has to be hoisted, doubly incontinent and can only manage about 3 words at a time. The only thing he does as well as ever is eat. I had the opportunity to talk to a junior doctor and a physio but in a nutshell no one thinks he's going to get any better, there's a meeting Friday to discuss his care needs and discharge destination, and also, no small matter, his CHC funding which I suspect they will try and take away. I would like bro to attend but suspect he won't. I am being quite careful to try and include him as much as possible, but not sure he can take in that Dad is not going to get any better than this and I'd like him to hear it from the professionals not me, as I don't want our relationship to be damaged by what happens to Dad next.
Well, that's where it's at for the moment. Will report back after the meeting.

I'm sorry Bob, that must be tough to see He sounds fairly similar to my Mother, though I think she can manage a few more words but is apparently very slurry. Are you thinking they will try and take his CHC because he isn't behaviourally challenging?

Very good idea to include your Brother and agree he needs to hear it from someone other than you. Maybe if he doesn't attend, someone from your Dad's care team could speak to him?

How are you feeling?

Well I'm sad but fairly calm about it. There's a line in the novel Capital "it was an unbearable situation, and like all unbearable situations it had to be borne", that kind of sums it up. It's really sad that Dad's life is ending like this, but there's absolutely nothing i can do to make him better. I am doing what I can to ensure he's as safe and comfortable as possible.
Yes I'm worried they'll say he's no longer challenging therefore he won't score on the behavioural domain and hey presto they'll take the money away.

Oh Bob I am sorry. How are you? Are you feeling any better? Take care.

That does sum it up well. I feel as if I'm grieving a bit this week with my Mother's decline. for us all.

thanks lovelies, not feeling too bad today. have been preparing for the CHC part of tomorrow's meeting then DH and me are off to see a movie. Plus a little breakthrough: bro has said he'll come to the meeting tomorrow to put his views forward.

Oh Bob,

At the moment I suspect you can't do much except see where the cards land. And in the meantime give yourself as much of a break as possible. A bit of distance and time with the people who support you, will help with perspective. Be aware of your emotions. If you are reluctant to re-engage or take on something, there is probably a reason, even if you do not know what it is.

During this time off you might consider a couple of things:

1. Money/assets. This is a difficut one for an Attorney, especially you, where you have questions about your brother's long term security. And like me you have the added complication that some of the income comes from property which brings its own stresses. I don't know if it would work for you, but when I am not sure, I ask myself what my father would have done. I don't know if this works for you? How would your mother have balanced your father's current needs against yours/those of your family and those of your brother.

1. Your brother. This must all be very difficult for him, and I suspect you will not get much clear thinking out of him. As a result I think I woud be tempted to research possible long term solutions for him, taking as much informed advice as possible, which gives him the support he needs without your day to day involvement. My guess is that this does not involve him staying in a crumbling property. Take photos and argue that he is not capable of maintaining the house as a safe environment. As long as you can identify somewhere that you think will meet his needs in the longer term, I would be tempted to use the current situation to push for change even if he expresses reluctance. Being cynical, I wonder if you would get better support if you outline something that also releases money for care costs. In and amongst, I think you need to consider what longer term relationship you want with him. Supportive yes, replacement parent no.

Hope you enjoy the film. That is positive about your Brother coming and I'll have fingers crossed that tomorrow's meeting goes as well as these things can.

Have you any idea how your Brother is likely to react if the decision is that residential care is the way forward ?

Thanks both. Well it's true the thought of bro living on in there on his own is an alarming one if i'm honest. however the thought of rehoming both of them just seems overwhelming. I don;t want to abandon him, or damage my relationship with him at this stage and he has made certain efforts to get better (take meds, get counselling, go to drop in centre) and i feel I should acknowledge that. He'll want to stay in the house for sure. But you are so right NMS I can't be a replacement parent. Sometimes I get v upset thinking about the hosue and bro, then I realise i am probably taking on what I imagine would have been my mother's feelings on the situation, I feel the pain she would have been in and it's not very helpful. In the longer term i think I'll need to be practical about it, offer help but if the situation is impossible ie he becomes a hoarder in a nightmare house, I'll have to inform the relevant services and keep my distance, rather than keep trying to fix it.

FWIW I think that is very sensible. I know I'd feel overwhelmed at the idea of rehomimg them both and think he should be given the chance to try living on his own. That has the benefit of spacing things out a bit as well. Totally agree about not being a replacement parent and keeping distance. It is good that he is trying to get better with meds, counselling etc which is quite a big step forward to a couple of years ago.

Will be thinking of you later Bob, take care.

Thinking of you- look after yourself

Sadly I have seen this kind of situation fairly regularly. I would think it's unlikely your father could go home unless he had 24/7 carer's, so possibly a nursing home placement would be the best for him.
Wishing you all the best for today's meetings Bob, definitely keep the passive approach.

Good luck too.

I was not suggesting you do anything about your brother now. However my experience is that when things are chaotic it is worth having an idea of where you might like things to end up long term. This is not a fixed goal, as you cannot control how things will pan out. But half an eye on the horizon can get you to the right place. So if SS suggest your dad will need to provide at least a share of any funding, there might be a chance to suggest a sustainable supported option to your brother. (If one exists.....)

Life would be easier in a year's time if your dad were comfortable in a care home where his dad to day needs were being met, and your brother within a supported community where he is encouraged to engage as best he can. I think you sell the house as it would be a huge amount of work to get to an acceptable standard, and keep the rental properties for as long as you can face being a landlord.

Well we had the meeting yesterday, bro attended as well and one after the other all professionals there said they didn't think dad could come home. It was nearly like and orchestra, with the CCG guy as a conductor. Having said that, i can't really dispute that conclusion, Dad takes at least 2 professionally trained persons to get him off the floor when he falls (and 3 lay persons). He resists most personal care. He needs 24 hr care now. The sad thing is there are no suitable places in his town and he will have to go further along the Kent coast to be in a specialist home that can cope with behavioural issues. The CHC funding continues, which is the only positive in this grim picture.
Bro looked shell shocked and I know probably entertains ideas of asking to take Dad home, but I know there's no way it'll be agreed, on a best interests basis.
All I can say is it's sad, that he'll be spending his last days in a care home for behaviouraly challenging people with dementia.
After it was all over I went to the cathedral and cried and cried. They got a priest out to talk to me which was supportive.

Oh Bob I am so sorry- but it sounds like your dad would not be safe at home. You poor thing- I am so glad you went to the cathedral and had someone to talk to. You must feel devastated. How are you now? Are you still off work? I hope so.
Please look after yourself and don't take too much on. Listening ears here if you need them. Take care.