Crisis Point for my father

[helena_1512]

Things are going dowhill. My father is sending the carers away before their time is up and refusing medication food and drink.

Yesterday he spent all day on the bed without a sheet on it - lying on the mattress. Very worried as he is we think partially incontinent. The carers all tried to get him so they could make the bed. We think that he has not eaten for 24/48 hours or taken his medication.

I am in the process of stepping away but trying to organise a Key Safe as some kind of safety net. Sadly social worker has already suggested this and he refused.

The Care Manager was worried enough to phone GP and asked me to do so too. I did and got a call back at 5.20. I do not know this GP and she needed to leave to collect her daughter but she was very very good and called me several times to update - she spoke to the Care Manger to get an idea what had been going on . She phoned Karon who had visited that afternoon to hear exactly how she found him. She then phoned him and he was very confused but adamant he did not want her to visit or to call an ambulance and whilst he has mental capacity he can do this.
She has put out an urgent visit from one of his GP's who know him this morning. She did mention hospital and so I would imagine they are thinking of sectioning him? Karon who visited was worried his legs were swollen and she too offered to call an ambulance and GP.
I have made it clear to the GP that i just cannot get involved and she was actually very good.She said carers were not working and maybe a team of nurses would be an option. I am afraid I burst into tears since I had a lot of calls after 5.30 last night from the GP and also from the Care Manager when she had the carers report.

If the bottom door is locked I will go over and unlock but I will go into the flat with the GP. My father was quite abusive to the GP telling her that GP's were trying to kill everyone off over 75! I do know that paranoia is part of dementia.

I know we still have a long way to go but at least the GP is now talking to me re my father - had to really fight to get to this stage. I do not know what today will bring but I have tried my best. Frankly I am starting to feel a home may be the only option left and got feeling GP was thinking this - she did say he may need more help than he could get in his flat.

Thanks for reading - not slept well but the support from Jenny and Bowlingbun has meant a huge amount. I feel for anyone going through this or indeed, anyone caring.

[bowlingbun]

Hi Helena, I would question whether or not dad had capacity, and maybe the GP is finally realising that he is behaving irrationally? If dad is not cooperating with his carers etc. then residential care is the only option. It might not be what part of him wanted, but he's making it inevitable by his own actions.

Your own health, and that of your husband's, must take priority. It's probably going to be a horrible day, maybe week, but this crisis is not of your making, it's his, entirely.

[jenny lucas]

Helena, I agree with BB. They can't possibly think he has mental capacity if he's saying that GPs want to kill everyone over 75! With luck, the visiting GP will take one look at his situation and then call an ambulance and have him 'taken in', whether to hospital or a care home.

Please leave it to the GP to sort out - they have the contacts and the clout to make things happen, and will have seen elderly people in your father's situation many times, so will know what to do, and when.

I definitely think 'staying out of it' until your dad is (I suspect this must happen now) 'settled' in a nursing/care home, and then you can go and visit him. You may need to be 'on hand' to do things like pack a suitcase for him, put his 'things' in his room there, etc etc, and then maybe sort out what happens to his flat and his contents, but you shouldn't need to do anything more about his actual care.

I think your title 'crisis point' is very apt, and believe me, if you read this forum, you'll see, over and over again, that it very very often takes a 'crisis' to make the transition from 'struggling on at home' to 'moved to residential care'. It can often be, for the elderly person themselves, more 'acceptable' to go into a care home as a result of a crisis, than as a 'planned entry' if you see what I mean. It sort of 'takes them by surprise' and they can do nothing about it! (whatever they object!)

I sort of did this with my own MIL. I'd been used to going up and down (and up and down!) to Glasgow, over months and months, either staying with her there, and/or bringing her back to me (for weeks and weeks) until I broke, and with the help of a good friend (a former counsellor herself), I made the call NOT to rent a flat near me for her (which would NOT have made my life any easier really) but to take the room on offer at the nearby Abbeyfield. So, I booked it, didn't tell her, drove up to Glasgow, brought her down to me....and straight to the Abbeyfield. I'm afraid I didn't give her a choice, and just said 'that's what has to be now, Granny - you're only ten minutes from me, I'll be visiting all the time, and taking you out, and you'll come for sleepovers, but it's 400 miles closer to me than Glasgow is, so that is a definite improvement!'

And that was that. She wasn't happy ('I hate this place, I can't be here, I can't!') but I kept saying, it's closer than Glasgow and I see you lots......because there really, really, REALLY was NO alternative! (except the 'end' of my own life - and I was not prepared to do that.)

So, back to you - I think you're probably in for a pretty fraught time in the immediate future, as the 'transfer' of your dad takes place (as it must now), but once he is 'in' you can relax, and then get the leftovers 'tidied up' and schedule your visits to him, secure in the knowledge that however 'testy' he may be when you visit, however complaining and unhappy, in the end you can kiss him goodbye, wave from the doorway ....and go back to your own life (where you have QUITE enough to do anyway with your own husband's care!)

All the very best, and as BB and I both say, please simply 'enable' the GP to do what she needs to do - and I'm very glad she's sympathetic. Maybe she knows only too well the toll that 'elder caring' for someone with dementia can be....

[bowlingbun]

We seem to have more and more people on the forum struggling to care for someone with dementia. I think it's so sad that there has to be a crisis before the medical profession and social services do anything. They just don't realise how difficult it is to say "I just can't do this any more" when it concerns a parent or spouse. So, so sad.

[helena_1512]

Thanks. Sadly not good start. Father's GP said he had been out last week. Explained that he had gone downhill. He wanted me to go over and call ambulance but I explained I was not medically trained and worried about the 'mental capacity thing'. He then said he would go out but would not let me know if my father was admitted, unless permission was given. I would have thought as 'next of kin' I would have to be informed? I have not written to say I am no longer prepared to be emergency contact yet because I wanted to get the Key Safe sorted, but I have made people aware I am backing out on a day to day thing. Leanne the Carers Manager thankfully phoned him too and he said that he would not tell her if my father was admitted! She had to stress how worried all the carers were and it was now a medical issue as he just would not take his tablets and had really downhill. I think she is struggling with this GP too as she said she has phoned every day with regard to the tablets, and he now must take action. Carer been in this morning but father has sores and bruise on his chest which was not there on Sunday. I can only assume he has fallen. But he was at least mobile this morning.
So just waiting. Will phone the Surgery this afternoon and see if I can find out more. Frankly if he gets admitted, I need to sort out some kind of bag for him. Also the carer who is due this evening needs to know.
Cannot understand why his GP is being so difficult. His colleague last night was lovely. Maybe he is angry because he has to do another home visit but no way would my father co-operate with getting into a taxi and I do not think we could get him down the stairs or even dressed.
Leanne thinks the physical problems and downhill spiral should be enough to get my father admitted to hospital.
So I guess it all depends which GP one gets! Leanne has been great as have the Care Team but they now all agree they are achieving very little and medication and food being rejected.
I think the GP has a 'duty of care' and hopefully with both Leanne and I stressing the downhill spiral he should do something. Just sad that it is such a fight....
.

[jenny lucas]

Sad indeed and frustrating. I guess the 'stubborn' GP is obsessed, possibly with justification, about all the 'civil liberties' stuff about GPs can and can't do in terms of 'deprivation of liberty' etc etc, and he fears some kind of malpractice suit brought on him either by your father (!) or 'angry relatives' etc etc.

What time does the other 'nice' GP come on duty? Maybe you could have a word with her, or maybe email her directly at the surgery?

The irony for the 'stubborn' doctor is that if he DOESN'T take action, your dad might indeed fall, potentially down stairs or whatever, and then the Gp would indeed probably have a 'dereliction of duty' problem on his hands!

BB has mentioned before the concept of 'best interests' which seems to be the phrase used to mesh together the tricky business of 'capacity' and 'DOLS' (deprivation of liberty), so that those like your dad can get the treatment they need even though they 'say' they don't want it!

As ever, stay out of it. Even if your dad needs a hospital bag, you could, I hope, pack this AFTER he's gone into hospital, and take it in for him. Don't put any valuables in it! Hospitals tend not to be secure places, and your dad won't be in any state to look after his possessions anyway.

Do hope things sort out soon. It is VERY stressful for you!

[bowlingbun]

As Leanne is the Care Agency manager, she can always call an ambulance if she is concerned. The GP has a duty of care to his/her patient.

[helena_1512]

Totally agree Bowlingbun but problem is my father still has some mental capacity and is adamant he does not want to go into hospital.
GP phoned - he very reluctantly went out as he said he went out last week. I and Leanne explained the detoriation and the refusal of tablets every day and also of food. He was quite reluctant to talk to me but I did say if my father was admitted I needed to get some clothes to him at some stage and as 'next of kin' they had a duty to inform me.
Bottom line is GP tried to get him to go into an Old Persons Specialist Unit for tests as he does not know what had caused the decline - dementia/stroke/depression/ UTI
He has said he is getting other teams involved who may overide the mental capacity. I can only imagine this is a old persons mental health team. He is a young GP and scared of being sued.
Call at 7pm - father in bed, told carer to go away, won't take pills or have a drink or eat!
Leanne visiting today - she will be phoning GP again. I will not phone GP today as I did yesterday to chase after visit.
I will pop round with underpants and sponge/flannel - told to get this by the carers but won't engage in any arguement. GP said my father was dressed but was very cagey when I asked if the bed was made, because if my father is lying on the bare mattress and having accident then this is going to make his sores worse. GP did mention sores on my fathers back and shoulders.
So we are getting there - just hope they intervene before it is too late. Rock and hard place because at the moment, we are all worried that if we call ambulance he won't go!
I have made it clear I am out of it but am involved as a safety net - I am the only person with the keys to the outside door and he WILL NOT let keys be put in the key safe. I could organise it but it would be illegal. Leanne said she would talk to him again.
I do wonder if he wants to die? This is horrible to face but maybe it is his choice? On the other hand, it could be something treatable or manageable. GP not that good frankly- I think he is just quite young and inexperienced but his is my father's named GP so cannot change him. I will ask Leanne to consider talking even complaining to the Practice Manager but he may well be following NHS protocol.
Tough isn't it?

[bowlingbun]

So difficult. Did GP arrange for district nurse to attend to the sores on his back?

[helena_1512]

At one stage a nurse visited to do this. I will ask Care Manager when she phones this afternoon as no way I can get much sense out of my father. I am going with the things the care manager asked me to get - sponge and underpants so shall have a look but carers have commented.....
I would imagine there would be a mental health assessment to determine if he has mental capacity - just hope sooner rather than later BUT if yesterday he was dressed when GP visited yet in bed naked at 6.30 when care worker visited and sent away, that does suggest some form of attention seeking?
Hardest part is things like stroke and UTI need to be ruled out ....but if he won't co-operate. Really feel for GP but I do feel he is putting the fear of being sued above the care and safety of his patient. Harsh I know but I do not think my father has mental capacity to take legal action and I most certainly won't.........