When to meddle?
I've a lady who's not coping perfectly well (past diagnoses include panic disorder (moderate), major depressive disorder, emotionally unstable personality disorder (impulsive type), PTSD) but manages. She's been managing for a few years, now. I know this because I've been seeing her at home at frequent intervals over the last couple years. She's making errors (unable to recall recent events accurately, unable to appreciate the value of assetts, unable to understand meaning behind interactions). She has been prompted to do activities of daily living for years, so cues in to meal times, bed time, time to bathe, when to change clothes according to when she's directed to do so. She only takes medication when prompted to do so.
She lives with her husband. He has mild dementia. He has coped with her mental health problems and his role as carer through self medicating with half a bottle of spirits a day, every day, for years. He doesn't act on things adeptly but in fairness this is longstanding and hasn't changed (e.g. every time I go I end up throwing out mouldy rotten food from their fridge). Sometimes he drinks more, gets drunk and falls over. Every couple months an ambulance crew attend.
Social services have offered support which has been accepted then after a short time refused. They don't want folk in their home, meddling.
He prompts her to take medication. He does this suboptimally. She has arthritic pains and dyspepsia. He gives her over the counter medication including paracetamol, ibuprofen and aspirin. The NSAIDs will probably be making her dyspepsia worse but since they're pain killers and she has mediastinal/stomach pains, they use more of them. Ho hum.
It's not a great situation, is it? But, somehow, they've managed for a year or so, limping along together. No serious harm has befallen them. They're living as they wish to, together, in their own home. On deciding future care and where to reside, both are incapacitated adults, within the meaning of the Mental Capacity Act 2005.
They're refusing practical support. There's no medication that can improve their experiences or mitigate risks. The choices are therefore quite stark. Do we leave them to limp along, or are they placed in 24 hour care?
14 comments:
This is a tricky one, because not only are you faced with a dilemma, but you need to be able to guess what might happen in the future.
It boils down to either heavy handed intervention, or laissez-faire hope. What does the GP suggest? Are there any family members?
This is also a dilemma that others face (GPs, Nurses, Social Workers). We used to be able to make decisions in good faith, and society was willing to accept us as proxy decision makers for them. You could imagine, however, the uproar in the media if (or when) something happens:
Shrink knew that couple were at risk but did nothing.
This would be a particular risk if the immediate family were disengaged, but felt guilty if something happened, so would blame you to deflect their own guilt.
Good luck with your decision - if you decide (whichever way) you are damned if you do, and damned if you don't.
Talk to the GP (if you trust them) and try to achieve a consensus decision.
I can't beat jobbingdoctor's comment, but instinctively I would leave them there. Don't let anyone haul me out of my home!
Seriously, would admissions not tend to make both of them worse by taking them away from their familiar environment?
I've worked closely with the GP for a couple years on this one, the GPs blood pressure rises when the ambulance or fire brigade attend, when we take out 2 carrier bag fulls of medication, when he attends to find a collapse (through alcohol). But the GP, like Elaine, doesn't want to haul folk out of their home so has worked with us to balance sensible positive risk taking with surveillance and intent to intervene if it all gets too bad.
So now we're all thinking, rather than positive risk taking, are we being maveric? By accepting the situation we're saying it's acceptable, but is it? Is it too bad?
It's such a difficult situation. I take it there is no mileage in letting the couple know how close to the line they are? Is there any benefit in some kind of ultimatum (either to them or to their family) that they have to accept some kind of day to day support or face being forced into some kind of supported livign environment?
I can't say I see this as an ideal answer though....
I'm thinking another attempt at in-home support. Surely if they come under the MCA then they can't really refuse the carers (perhaps with CPN backup?) and it might then be possible to gain trust, get into a supported routine...
And I really don't think letting them know that they're a skip and a jump away from residential care would be a bad thing, either. Never know - they might actually want/welcome/accept it, if they're aware of how much they're struggling.
What a difficult situation-I can only echo the others, anything but having to leave my home!
Having experienced how hit and miss home 'care' can be, would it be worth another try, especially if someone in the family is capable of organising direct payments?
Good luck with the decision, Bendy Girl
Seen this type of situation before. Generally the attempt is always to go for the least restrictive answer and with or without capacity, it is quite heavy-handed to move someone to residential care without consent. What I usually try to do is to introduce a regular carer (again, sometimes without it being 'wanted') but if a regular person who can visit regular and check things are ok, is presented in a particular way and can build a relationship then sometimes it can be a way in for services.
I think you can do all you can - possibly telecare (assistive techology - by whatever terms it may be described) and possibly trying homecare even if it is initially refused, you are offering options.
It is difficult though.
I would leave them be - I really would.
Like your blog ......
You've yet to mention family?
I see their dogged determination for independence and I respect that. But I suppose the lack of insight/foresight is likely to lead to a more rapidly declining quality of life than if they can adjust to supported care at home.
Were the full reasons for ejecting the previous home carer properly understood? If you can work on that then you can work on the resistance to accept care. If they are only used to seeing you or the GP once a month - to suddenly have a carer visit on a more regular basis would be a huge change. Since they are coping... surviving between visits/emergency calls would it be prudent to introduce the carer again but a lot more slowly? Perhaps once a week care?
I'm guessing they accept you visiting them and meddling in their fridge. Use that as an in-road to desensitise them to other 'meddlers' by taking the home carer with you on your visits. Of course this may mean increasing your visits temporarily - or one of the other accepted members of the community team may assist this process.
Oh dear. I guess I'd leave them be for now and allow them to live independently but be watchful for further deterioration. More frequent visiting would be a must I suppose. It's a tricky situation though for sure.
That is a difficult one indeed. No advice really, just wishing you some luck with making this decision
How old are the clients? If they're over 60 they could qualify for some sort of Department of Aging services...home care, case management...
If there's somebody there monitoring them they might be able to stay in their home a bit longer.
I used to recommend Adult Protective Services, but the past few times I have used them they have made the case worse.
Becca, they could have care in place under section 5 of the MCA 2005 or have to allow necessary professionals into their property under section 7 of the MHA 1983 but pragmatically it can't happen. Although legally it can be the case, are social services carers going to call police and force entry when they say no? We've tried care a lot with them. They refuse, we push, they accept, it starts, they maintain they don't want it then then refuse it.
CB we've used telecare to better manage her falls (if she's down for a length of time through the day and doesn't get up it activates) but they refused it on doors.
Tainted Halo, family have no meaningful input at all, there are no immediate family and the nephew just gets irate 'phone calls from them so pops in episodically but can't provide stability or mitigate risk through his input.
Alm, they're in their 80's and 90's and indeed can access a raft of support. But, through the stoical character inculcated into their generation, they decline all help.
This could be unsatisfactory but acceptable if they were well. As incapacitated adults it's no longer wholly their decision to make.
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