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Original poster

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.

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Original poster
whataboutbob · 22/12/2015 17:28

Interesting you say that because one of the things that has helped me cope with my father's illness and all the demands it has thrown at me is (most of the time) not seeing him as my father, but someone I have responsibility towards. He wasn't the best Dad ever. But at the end of the day, a decent yet flawed human.

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bigTillyMint · 22/12/2015 16:56

Thanks bob! Sorry that it is a hard time for you. And others, of course.

I actually am not so bothered about any disconnect because I haven't been close to DM since I was a small child and bizarrely I actually feel more benign towards her now she is so vulnerable - I haven't seen her in the role of my mother for so long. If that makes any sense. I just feel responsible but a bit at a loss as I'm so far away (but wouldn't want/couldn't anyway physically have her moving in with us)

Original poster
whataboutbob · 22/12/2015 14:39

Thanks BTM. Undoubtedly it would have been hard if I'd been further, in fact we were thinking of moving out of london when Dad's dementia became apparent and had to drop the idea. I did support my grandad who lived in France (I was NOK), but obvioulsy couldn't do that much for him except a few visits a year and when he was very ill with parkinsons and cancer i arranged for him to go into a home.
I'm sorry I can't remember all your posts, I know you are far from your mum and moving a person with impaired cognition is difficult. I hope you have a peaceful Christmas. I find this a hard time of year because of the disconnect between what it's supposed to be , and what it really is when you have vulnerable parents.

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bigTillyMint · 21/12/2015 18:40

Oh bob, I have just caught up with what has been happeningFlowersWineChocolate

It sounds very tough for you. I hope you are still signed off/not at work - it sounds such a lot to do. I wonder how it would all work if you were much further away (as I am from my DM) Glad to hear you got some support from the priest.

Original poster
whataboutbob · 20/12/2015 18:38

Thanks everyone. Your support and the information i get from this webpage are invaluable.
yes there is a lot of sadness in bowing to the inevitable but i am coming to accept it.
Obviously I have been worried about bro, just rang him he sounded sad but OK, he tells me he's off to his weekly pub quizz. I am encouraging him to come here for Christmas (despite DCs telling me outright they'd rather he didn't because "it'll be depressing, you'll just talk about Grandpa, and we don't want to hear about it it'll spoil Christmas") Kids can be so robustly selfish! Actually I don't mind I'm pleased they're saying what they feel. Won't make any difference, bro is welcome and I'll make sure we don't just talk about dementia on Christmas day!
Hope everyone else is doing well. Thinking of you all.

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CMOTDibbler · 20/12/2015 14:18

Bob, you've tried so very hard to keep your dad and brother going at home that you shouldn't feel any guilt.

I agree this time of year does seem to amplify emotions as well - all those images of the perfect family etc

SugarPlumTree · 20/12/2015 14:05

FlowersWineCake for you too NMS, it is sad.

Needmoresleep · 20/12/2015 10:39

Perhaps though your thread title says it all.

"not sure i can manage this one"

You have done what you can and more, to enable your DF to stay at home as long as possible. I think you, like me, have always knows that there will be a stage where residential care would be needed. I had previously thought that I would try to prop up DM in her sheltered housng for as long as possible by gradually stepping up the care, but the past few months have made me think that we will get to a point where she less able to use her "independence" or take advantage of community life, sooner than I expected, and that a care setting where she is encouraged to engage and to use and retain her remaining skills, will be better for her.

It is all very sad.

SugarPlumTree · 19/12/2015 16:54

I'm so sorry Bob. It is another step in the bereavement process isn't it ? And the time of year makes it that little bit harder I think. I have moments of being quite wobbly this week which caught me by surprise. I realised how much we all say all the right things about the circumstances but underneath it still hurts, however rational and level headed you try to be.

I think it is roughly 2 years this week or the week before that my Mother went into care. I remember you saying then that you thought it would be a decision you would probably be facing shortly. You have given him an extra 2 years at home which is an amazing thing to have done and hopefully one day will be a bit of a comfort when it's less raw.

FlowersWineCake for you, be very kind to yourself right now.

Original poster
whataboutbob · 19/12/2015 16:30

Thanks sandwich. I have been feeling pretty sad, but life goes on, a friend came round with his son and we all went to the park. You have increasingly big gaps between thinking about it. Plus I realise I have to park the guilt, and before Dad had dementia, if this scenario had been presented to him (but not with himself as the main character) he's have said a care home was the only possible solution.
Hope you are ok sandwich and have a really good christmas, and thank you for all your support.

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thesandwich · 19/12/2015 15:54

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.

Original poster
whataboutbob · 19/12/2015 15:45

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.

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Needmoresleep · 18/12/2015 10:32

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.

P1nkP0ppy · 18/12/2015 08:13

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.

thesandwich · 18/12/2015 08:01

Thinking of you- look after yourself

SugarPlumTree · 18/12/2015 07:36

Will be thinking of you later Bob, take care.

SugarPlumTree · 17/12/2015 18:33

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.

Original poster
whataboutbob · 17/12/2015 18:01

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.

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SugarPlumTree · 17/12/2015 17:25

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 ?

Needmoresleep · 17/12/2015 11:59

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.
Original poster
whataboutbob · 17/12/2015 11:01

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.

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SugarPlumTree · 17/12/2015 09:38

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

thesandwich · 16/12/2015 22:21

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

Original poster
whataboutbob · 16/12/2015 21:12

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.

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SugarPlumTree · 16/12/2015 19:49

How are you feeling?