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Respecting a person's rights vs giving proper care

nita

Registered User
Dec 30, 2011
2,379
0
Essex
This is just a general question which has arisen in my Mum's case with the carers who visit her four times a day. She has AD and severe arthritis.

Sometimes she doesn't want them to touch her or to change her pad. Obviously this is necessary as she is only changed once ever 4 or so hours. I can usually persuade her to let them do it by explaining to her why it needs to be done (thankfully, at the moment she is still amenable to reason).

She also suffers from chronic pain and doesn't much like being hoisted. Again she can be encouraged to put up with it for a short while in the interests of her getting on the commode and going to the toilet. She is likely to get constipated otherwise. I can understand that the carers take fright if she definitely says she doesn't want them to do it, perhaps midway through hoist, but, again, she could be persuaded sometimes if you say the right thing. They seem to be very concerned about infringing her human rights but at what point does this become dereliction of duty and a risk to her wellbeing? The same goes for washing.

This question must also come up where people are living alone, neglecting themselves, not wanting to wash, etc. At what point can Social Services step in and say this must be rectified?

And also, with care homes....in respite my mother was often left all day in bed because she complained of pain or feeling tired. She does suffer from chronic pain but I did get her up at home, even if she slept most of the time in her armchair. At least I could take her out which perked her up.

What happens if a person's behaviour is extreme and they are non-compliant and even aggressive? Do the carers just let the person go unwashed, etc.

I wonder if anyone has any thoughts that can clarify what is a very grey area.
 
Last edited:

janma221

Registered User
Apr 23, 2013
284
0
Powys
Just replying to bump your post back to the top and hope you get the support you need from others in your situation. My mother hates the carers and puts the chain on the door to stop them coming in. She is able to wash herself (just) and is still continent but in other ways not really safe.
Take care
Jan x
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
Yes you are right this is extremely difficult, but the law is fairly clear: our human rights have to be respected. If we do not wish to be showered/changed/take our medication/ - whatever it may be - we have the right to refuse.

We can only have these things forced upon us if we are put under section - and we are only sectioned if two doctors (and others I think) decide that either we or others are in danger.

My mother was sectioned three times in her life and the final time was by far the most humane. Once my mother was in the acute assessment unit the last time, the nursing level was high (in numbers and in skills) and she was not sedated into submission nor was she tied up or down. The staff continued to offer her showers and she continued to refuse. (I won't describe the state she was in.) When my brother arrived he was asked if there was any way of persuading her to comply - and he suggested she be offered cigarettes after her shower. The nurses were able to do that - they keep cigarettes locked away for such a purpose - but I was so impressed by this approach. They continued to look after my mother in this way - with gentle and repetitive approaches - while deflecting the violence - for months.

But the demands on nursing resources are huge.
 

nita

Registered User
Dec 30, 2011
2,379
0
Essex
Thank you for your reply, Butter. I understand that a person has to be section and, for example, medicated, if they are a danger to themselves or others.

The nurse did a good job by offering the bribe - you have to find a way round it, particularly with a dementia sufferer - there may be all sorts of different tactics you can try without infringing the person's rights.

Surely someone can't go unwashed or left in bed if looked after in a care home setting or by "care in the community"? Don't these carers have a certain responsibility to make sure the person is looked after properly?

I only say this because my Mum often protests quite vociferously about being moved by the carers who visit but she can be calmed down if you talk to her gently and say the right things; she is amenable to reasoning, so far. The carers seem to just want to get on with the job and not have any complications; they just "down tools" if there's any sign of dissent. I wondered what happens in a care home in these cases - these are things we don't necessarily see.
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
In my mother's home, the carers would leave residents and then go back a while later. Again and again if necessary. If people continue to fight off care, the doctor will be called and people will be hospitalised eventually. Dirt in itself is not dangerous - but infections that can follow self-neglect may be.
 

LYN T

Registered User
Aug 30, 2012
6,958
0
Brixham Devon
When my Husband was sectioned the last time he sometimes refused his medication and washing etc. As far as the medication goes they would have to talk to a SW and the Consultant to agree to give him his medication hidden in his food.

Now he is in a CH P quite often refuses his bath but generally agrees to a 'wash-down'. The Carers have a time limit on this as P's idea of a 'wash-down' should only last a few seconds:eek: So they start at the important bits as he's doubly incontinent and has psoriasis at the top of his bottom.Obviously the Carers don't want this to get infected.

The Carers manage better than I ever did when P was at home- I used to spend a lot of my time following him round the house with a wet face cloth in my hand:):):):)


I guess it's a case of getting the care/rights balance as even as they can.

Take care Lyn T
 

Jessbow

Registered User
Mar 1, 2013
4,057
0
Midlands
I don't know how you could make someone wash/bath /shower against their will.

If the carers really forced the issue we'd be down on them like a ton of bricks.

Can the lady in question not have a bed bath?
 

nita

Registered User
Dec 30, 2011
2,379
0
Essex
At the moment, my mother is in bed and the only position she is comfortable in is on her back. Because she is wearing pads (enforced incontinence because she has to be hoisted and I am not allowed to do it), they have to roll her from one side to the other to fix the pads. She suffers with arthritis and sometimes is in more discomfort than others. Most of the time she accepts the carers, there have just been a few occasions when she has objected.

I suppose my point was - how far are carers prepared to go to put a person at ease in order to carry out necessary care? With my mother, sometimes it works if I talk to her in the kind of language she understands - she doesn't realise she is wearing pads, thinks she still has her underwear on, etc. so if they say to her "We're going to change your pad" I suspect she doesn't know what they are talking about. Then they might say "shall we hoist you?" - again she doesn't know that this is how she has to be moved. If they ask her if she wants to use the commode, she might say "no" thinks she still goes to the toilet and also doesn't realise that this is her only chance for a few hours to go unless given extra explanation such as "if you sit on it, you might want to go" etc. etc. I feel as if I am interfering if I act as her "interpreter"; they seem as if they don't have the time to go to this trouble though it only takes a few extra words.

With a person who is mentally impaired sometimes you can't take their "no" at face value and a little extra persuasion works. Even if she shouts out "don't touch me!", by reasoning with her, she can agree to let you help her and accept it with no further ado.

I am wondering how this worked in the care home while she was in respite. The reason I am writing about this is that I am mulling over in my mind whether she would be better off in a home because there are these difficulties at times with the carers visiting and they have limited time whereas in a home, as Butter said, they try again later if at first they don't succeed! Also, there might be different carers at different times and the person may favour one more than another and so do their bidding. She would also presumably be changed more frequently if resident in a home.

I am trying to work out what is best for her, where she would be better off. I suppose the problem is that the care at home isn't working out as I had hoped it would and perhaps I expected too much of the care agency workers. I want her to stay at home and I will be very upset if she has to go and I do have my doubts about the standards in care homes, especially after reading some of the things on TP.
 

Contrary Mary

Registered User
Jun 11, 2010
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68
Greater London
I am trying to work out what is best for her, where she would be better off. I suppose the problem is that the care at home isn't working out as I had hoped it would and perhaps I expected too much of the care agency workers. I want her to stay at home and I will be very upset if she has to go and I do have my doubts about the standards in care homes, especially after reading some of the things on TP.

I have followed a lot of your story, Nita, as there are many similarities to my Mum. It is a tough question. I have long been exasperated by the debate as to what is "abuse" and what, to my mind is "neglect". Coupled with carers who persist in asking questions when suggesting a course of action and doing it would be better.

The only thing I would say is have you looked at any homes. Just, you understand, on a "what if" basis. Because the last thing you want is to be rushed into a decision. And sadly it may come, as it did for me, when it becomes just too much to cope with. xx
 

cragmaid

Registered User
Oct 18, 2010
7,937
0
North East England
I'm working a day or so behind so sorry in case it has been mentioned..but who arranged the care, is it SS, private agency or care home even? The reason I ask is that is sounds like a care plan revision might be on the cards. This from someone who went into Mum's room today and made her strip at 2.30 pm and put the clean clothes on. ( They'd been on the wardrobe door for OVER a week.:mad::mad:)
 

zelana

Registered User
Feb 11, 2013
127
0
N E Lincs
in a home, as Butter said, they try again later if at first they don't succeed!
That was definitely the case with Mum when she wasn't co-operating with baths. If she refused they would always try again later.

Also, there might be different carers at different times and the person may favour one more than another and so do their bidding

Once when we were visiting Mum her door was open and another resident just walked in and sat down. The first carer who tried to get her to move failed miserably but she got someone else who had no trouble at all persuading the lady to leave.

Nita, maybe you could book your Mum into respite again so you can see how they deal with her.
 

nita

Registered User
Dec 30, 2011
2,379
0
Essex
Thank you for the replies to my rather vague thread. The care plan was arranged by SS - I do think the SW is revising it slightly in light of my comments but whether it's acted on.... I was fairly happy with the care home where my Mum went in for respite - apart from a couple of concerns about it but overall it seemed fairly good - and Mum seemed content in there - so maybe it's just me trying to hang on to her.

I don't know if I mentioned I've had other problems with the care agency - they refused to hoist Mum after they had trouble (both with her and the hoist!) the second time they did it - and so she has been confined to bed ever since, hence got constipated as she is not incontinent and wanted to sit on the commode; had to have a micro-enema and laxatives - I think I wrote about this as well. Last week was a very anxious one. They now will hoist her to the commode but not to the armchair because they can't get the sling behind her properly so I am going to buy a reclining one. The OT and the mobility shop owner are coming next week.

She seems to be going downhill - sleeping practically the whole time, just waking for her meals and when the carers come. I think it is worse because she is not getting up or being taken out. None of it has turned out how I had hoped. I feel rather exhausted as I spent last week getting in a state about and writing letters of complaint. On top of this, the pressure-relieving mattress and pump went wrong and had to be replaced; the carers thought they'd found a pressure sore at the base of Mum's spine (wasn't one).

I don't know what stage she is at - does it sound like end stage? Should I get a psychiatrist to see her?
 

Mamsgirl

Registered User
Jun 2, 2013
635
0
Melbourne, Australia
Nita towards the end my stepfather found it painful to be moved and was fearful of being hoisted so the nurses administered a small amount of morphine half an hour before moving him, and this worked really well.

I'm thinking your Mum may well benefit from more intensive nursing care now, such as the flexible opportunities to bathe, care on hand to sit her on the commode when she needs it and without pressure to er, perform, in a limited time frame, and not having to potentially sit in accidents for three hours.

You're a truly good person to be juggling paid work and high needs care with such gentleness. If everyone was loved by someone like you this world would be a much better place,
Toni x
 

nita

Registered User
Dec 30, 2011
2,379
0
Essex
Thank you Toni - you have voiced what I was thinking but am trying to put at the back of my mind. I am not, however, working - I gave up work 5 years ago to look after Mum - she then had severe arthritis and chronic pain problems; 3 years ago she also started to show signs of Alzheimer's. I would look after her myself but I'm not allowed to use the hoist and it needs to people, as I'm not trained. I wanted to get training but then the SW said the care agency staff wouldn't be allowed to work with me! So I have to agree to carers coming in. Also to the pad changing as I can't do that on my own.

However, it is getting a bit better. I got up early this morning and "prepped" Mum beforehand that the carers were coming to sort out her underwear as she can't get up in the night and she gets wet. She understood and it all went well when they came. It's a bit variable though, depending on how she feels. Maybe it can work out - the district nurse is visiting regarding her skin/possible development of pressure sores - so I feel a little happier about the situation.