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Elderly parents

Another crisis and not sure i can manage this one

60 replies

whataboutbob · 06/12/2015 10:27

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.

OP posts:
SugarPlumTree · 16/12/2015 19:49

I'm sorry Bob, that must be tough to see Flowers 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?

whataboutbob · 16/12/2015 19:39

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.

OP posts:
SugarPlumTree · 15/12/2015 17:27

You definitely need a calmer Christmas Day Bob Flowers 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 ?

whataboutbob · 14/12/2015 11:06

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.

OP posts:
thesandwich · 13/12/2015 21:08

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.

SugarPlumTree · 13/12/2015 20:42

I'm so very sorry about your Mum Flowers 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.

Hatgirl · 13/12/2015 20:17

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.

whataboutbob · 13/12/2015 19:58

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?

OP posts:
SugarPlumTree · 13/12/2015 18:08

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 Flowers

thesandwich · 13/12/2015 17:07

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?

whataboutbob · 13/12/2015 16:16

Well dad is still in hospital. Weirdly, I haven't heard from hospital/ discharge team/ ICT since Tuesday. It's all gone a bit quiet and I do not get the feeling they are pushing for a discharge. My brother has visited a few times and says he has shingles, but he was told that by a carer not a medic so I'm not sure it's accurate.
I know i need to do a clear out but one big problem is my brother who has inherited Dad's hoarding tendencies. I would like to get rid off all the junk in Dad's garages (it really is beyond a horror movie) but bro does not want to. I tried to put pressure on him by saying dad can only come home if space is made for him in the living room, and he told me he'd been shifting stuff from the garage into the loft! He did agree to us sorting stuff together so I'm going there on Tuesday to look through all the junk, hopefully get him to agree to parting with stuff, and then i'll go and visit dad.
I have booked a clearance company for the 23rd but my fear is bro will freak and no real headway will be made. Sometimes the combo of Dad and brother just seems too much to be honest, i have been feeling quite depressed. My GP signed me off for another 2 weeks which I admit is a real relief.

OP posts:
thesandwich · 13/12/2015 14:08

How are you doing Bob? Hope you are feeling better.

thesandwich · 09/12/2015 20:57

Bob well done for sitting on your hands on this- I know how hard it must be but you need to do it girl your health and sanity. NMS is spot on as always- we cannot make things right or what they want- just what can be done and often by others. Take it easy.

Needmoresleep · 09/12/2015 17:27

And I hate to say this but it seems to be part of the bereavement. Essentially your parent becomes a problem to be managed. Yes they may state preferences, like SPT's mother on the other thread expecting to go to California, but you know what they want is unreaslistic, so you have to make decisions on your own taking on board what setting will be best for them and where they will be most content.

It makes it easier. But is sad nonetheless.

whataboutbob · 09/12/2015 17:14

Thanks guys for the first time ever in this sad saga I am just keeping a low profile and letting others deal with it. i know it's temporary but heck, it feels good!

OP posts:
Needmoresleep · 09/12/2015 15:44

Bob, you have just added to my store of random knowledge. I have just googled my council. Incontinence pads can be double bagged and put in ordinary waste. Syringes however qualify for a special collection.

In the meantime sit tight and rest. At the moment it is someone else's problem.

opioneers · 09/12/2015 15:14

Hello, sorry to hear this. Can you talk to the hospital social workers? They should be there, if you can hunt them down.

We had a very similar situation with my mother at the start of this year. I took photos of the house, which was the only way of convincing them that the place was unsuitable for her to return too (massive hoarding issues too). I also - as advised on here - used the phrase 'unsafe discharge' a lot, and in the end they did listen and found her a month's place in a nursing home for assessment.

Also, the social workers were very good at putting me in touch with cleaning firms who specialise in this kind of clearing - I dealt with two, both of whom were very sensitive, helpful and good at distinguishing between important personal possessions and rubbish. And didn't judge at all.

SugarPlumTree · 09/12/2015 15:07

Yuck but I guess that is a help for some ! Well done, you're doing brilliantly Brew

whataboutbob · 09/12/2015 14:49

Thanks everyone. I have not heard anything from the hospital, just got a phone call from the ICT OT. Everything and everyone seems to be working slowly, which suits me at the moment. I'm not taking the initiative on anything. Only thing i've done is order a new washing machine and also found out the unpleasant but practical fact that the council does special incontinence pad sacks and collection. Who knew. Next week if I'm up to it I'll arrange for Dad's lifetime of junk to be removed from his 2 garages.

OP posts:
SugarPlumTree · 09/12/2015 07:43

Well done for realising your limits and sticking to them Bob. So sorry there is yet another layer of stress added with him now in hospital. I think not chasing is definitely good, see how it pans out. The bed blocking issue will focus the professionals thinking I suspect, see what they suggest.

thesandwich · 08/12/2015 22:15

Oh Bob. Well done for sticking to your guns. Wise words from all on here- but you cannot do it all. Take that time out. Look after yourself.

whataboutbob · 08/12/2015 21:12

Thanks everyone. The inevitable happened, Dad had a fall and could not be picked up so an ambulance was called and he was taken to hospital on Sunday. I was rung by a discharge OT who informed me that as he was medically fit (?!) they were looking at discharging him today. I explained that his home was entirely unsuitable and if discharged back there the same would happen again. SHe asked me to find a respite place for him, obviously worried about bed blocking. At this point my self preservation kicked in and i said no, on the grounds that i had been medically signed off work for 2 weeks with stress and very high blood pressure and i couldn't take this on. I said I would be working on adapting the living room, ICT had promised various items but currently they can;t go in because the living room is full of junk, etc etc. I'll do a clear up, but not this week.
He's still in hospital. I don't know what is going to happen in the short term and I am not desperate to chase up everyone and find out. I've been sleeping quite a bit, now I'm not working I realise how tired I am.
Don't feel i can go back to work next week. If i have to take unpaid leave so be it.

OP posts:
Needmoresleep · 08/12/2015 19:37

Bob. Sorry I missed your post. I hope it does not look as bleak today. All my sympathy is there, but instead getting to the point.

  1. Your dad can't continue at home. Everyone has done as much as they can and that cost now is too high
Hopefully he is more passive now. What do SS and others suggest. Ball is in their court. Minimise your involvement, not least to try and force the issue.
  1. What are the options for your brother. I would have thought some sort of sheltered/community option. Staying where he is on his own would not be good for him. Does he have some sort of key worker. Tell them your dad has reached the end of the road. Your brother needs to move. He won't like change but it will be in his interest. You could always say that you will need to sell the house to pay care home costs.
  1. Clearing the garage. Don't do this on your own. It goes much faster with others. It's like the TV programmes. Others can be more detatched. 3 hours, nice pub lunch then another 3 hours. With two or three others you can real headway. Perhaps a chance for the long suggested MN meet up. (Seriously I'm game.)
  1. Rental property. Aaarrrgh. Yes there is money to be made but it is hard work. Get the building work done and get to the end of the tenancy. Then if you have a decent agent give them management. If you don't, sell. The personal cost is too high

I think that's it. Ohh also if you can't face any of this then don't. Things curiously won't fall apart, or more probably they need to and if you are not there someone else will have to pick up the tasks.

SugarPlumTree · 08/12/2015 13:55

How are you doing Bob?

SugarPlumTree · 06/12/2015 19:13

It's a T shirt I'd rather you don't have to wear too but sadly I think it is the nature of the Beast aka Dementia. I think the DN referral adds more grist to the mill in a case conference. I suspect there is an element of waiting to see what you do to be honest but could be wrong.

I'm glad your GP was sympathetic and think you are right to take more time off until you feel stronger. It's 2 years ago this month that my Mother went into Care and I still find my blood pressure shoots up with stressful things, it did it today as we've had difficulty with DS and school but I do know now when I have to take a bit of time out.

It feels like a horrible thing to do but I would recommend emailing SS to say you are currently unwell and in medical advice can't be involved in your Dad's care, so it's in writing. Say you support whatever decision they feel is the right one now as you trust them to act in your Dad's best interests . It doesn't feel good but in the words of my counsellor - is it your guilt to feel? It's not, it's the horrible circumstances you're in, no one's fault but the disease.

Deciding to take time off and to step back if that's what you do decide to do, are very positive steps. I think looking back you'll probably see this time as the crisis point but the time when hard decisions were taken that led your Dad to getting the care he needs and you protecting your health and being there for your children.

Also with your Brother in the picture it is better for your future relationship if this decision comes from the professionals. Take care and please keep posting, even if it just a massive scream.