Under Pressure

[Scruffy]

The other day when our usual district nurses called to change mum's dressing on a pressure sore mum has got, they brought with them someone who called herself a matron nurse but said she knew nothing about wounds, that she was more about the social side and something else which I can't remember.
I had no notification she was coming and I strongly suspect one particular nurse behind things being done to get us to have outside carers coming in, which we don't want but we have money from social services to pay for carers if and when we want them.
This matron said 'they' would like to take mum to a meeting to discuss her case. She meant take mum's case to the meeting, not physically take her. I said that would be ok but later she told me that social services, physiotherapists, occupational health and who knows who else, would be there. Once I heard that social services would be there I objected and she said I can't object because they had to be there. I then said that I objected to the meeting taking place but this was ignored and she continued regardless.
She said they would just put suggestions to me about other possible options to help mum. I don't know if she said I wouldn't have to accept them or whether I got that from someone I phoned later.
She asked to see my power of attorney documents which I showed her. Why would she need to see this if they only make suggestions ?
I am being put under enormous pressure again to accept carers. We have had them before and it didn't work for us and distressed mum so much that she wasn't sleeping at night.
Truly my mum is not hard to care for and everyone has said how well cared for she is. One nurse the other day said 'they' all think this is the best place for mum to be.
The matron herself said she could tell from mum's diet diary which she had asked about, that she was well looked after.
I just slipped up with mum getting a pressure sore and now I feel under pressure and suspicion.
I phoned a carers support line and was told the people having the meeting couldn't force me to do anything and couldn't take mum away unless they thought she was in danger.
I just don't trust them not to make out that she would be in danger unless I accept carers.
I have friends who sit with mum so I can get out and my brother and sister visit fairly regularly.
I'm scared. I feel I was manipulated into giving my approval for the meeting and fearful of the consequences.
On the day the matron came there were so many of them that I wasn't by mum's side when they were turning her until the last roll over and by this time mum was so distressed that she didn't recognise me and that rarely happens unless she's distressed which she never is with me. She once again hardly slept that night as a result of what went on at the visit.

Mum has dementia and when stressed she makes little sense but alone and quiet with me she is a lot better and when I asked her if she was ok after the nurses and matron had gone, mum said "I hated that". Later in the afternoon mum asked "we're you getting told off before".
These people won't see mum like she us with me, they won't realise how aware she is of what they're doing and saying but this is also what distressed her.

I'd like to know what would be likely to be said at this meeting and what the consequences would be. Also what can I do if I don't want what they 'suggest'?

When I told this matron about information I'd been given in the past by a carers advocate about having something pushed on us that we've said we don't want breaking the mental health code of conduct and she dismissed this and made out it was wrong but that guy knew his stuff to the letter.
The pushy district nurse stayed behind and backed up the matron so that I felt got at and overwhelmed. She scared me to my stomach and said mum's sore is a lot worse than originally thought but other nurses, several in fact, including this one have said that the wound is doing well and healing, that the skin is pink. One said it looked like it had been worse but was getting better. So I felt this nurse was putting the fear of God into me to get me to give in and accept carers.
We just don't want them. What can I do about all this ?

[Scruffy]

Just to add that mum complained about the noise and the voice, obviously the matrons voice was getting to her. The matron then said they would go as they'd "done enough for now".
What does that mean ?

This is distressing myself not just mum. I too am hardly sleeping especially if the evening nurses arrive late. Mum's dressing gets changed twice a day to keep it dry. The other night they didn't come until nearly midnight.

Having so many strangers is affecting mum's sleep pattern and having yet more carers in is not going to make things any better. We want and need peace and quiet and be left alone.
I'm not so stupid that if I needed help I wouldn't ask for it. I know how and where to go.

So why all this hassle and pressure ?
I can't sleep now for thinking about it.

We saw the dietitian today and she was pleased with mum's diet and said she couldn't fault it and that I was doing everything right with her high protein diet.

When the soft tissue viability nurse came out I was able to show her mum's stats that I take almost every day showing mum's temp, oxygen, pulse, blood pressure and blood sugar. She said this was great as she doesn't usually get this level of detail.

Mum is clean and in lovely bedding in special easy to change clothing with relaxation DVDs playing or old time songs on the cd. She has her comfort toys and a view out of the window to the garden with a window bird feeder to watch the birds.
She wouldn't get this kind of care elsewhere and I love being with her.
I'm changing her position regularly and putting cream on her legs for her skin. I don't find it hard or difficult the way the matron obviously wanted to make out that it was for her purposes.
I can get out when I want to. It's their interference that makes our lives harder.
So why all this pressure on us ?

[bowlingbun]

You are doing a wonderful job, but it sounds like you need someone on yours and mum's side, some sort of advocate. Can you think of anyone who might be able to help you at meetings? Normally, they are arranged through social services, but there might be a local disability rights group near you?

[Henrietta]

Hi Scruffy
I know where you are coming from because when dad was admitted to hospital he had pressure sores and Social Services Safeguarding kicked in. I was really alarmed to hear the word safeguarding as it makes you feel so guilty and that you have let someone down. After a few discussions it became clear that Dad was being very obstructive in letting anyone help him and that it was basically his actions alone which had resulted in the sores.

I am sure no one is pointing fingers at you but merely trying to get the best possible support for your mum. It can become overwhelming trying to cope alone so try to accept their recommendations and just make sure that they are aware your mum's wishes would be to remain at home.
If there were problems with previous carers try and address these in advance. Explain to them why things didn't work out last time and that your mum prefers soft voices and single conversations rather than several people talking at once.

[susieq]

Hi Scruffy

It's obvious that you do care for your Mum very well indeed and I don't think that this is actually the issue with the Care Workers/DN's and Social Services - I seem to remember in previous posts that you have said that the care workers/DN etc all seem to be worried that YOU don't seem to get enough 'me' time, and that when they ask you about it you refuse to divulge the fact that you do get out and about and that you do have family support in caring for your Mum. I can understand you saying that it's none of their business; I know that you and your Mum are very 'private' ladies, but perhaps if you were to explain to them clearly that you do have enough 'me' time and family support they would realise that they don't need to worry about you and would stop trying to foist services on you that you clearly do not want at this time.

If they are still bent on having a meeting to discuss Mum's case I think that you should ensure that you are included in the meeting and take someone with you, either an advocate or friend or member of the family to give you support.

[bowlingbun]

My mum developed sores in hospital, which eventually led to her death. Elderly skin is so fragile, even with the very best care.

[Elaine]

Hi Scruffy
Maybe they don't believe that you are 'real'. By that I mean that they must come across so many stressed, desperate for help and over worked Carers that they can't understand that you are more than happy to look after Mum, that you are doing a really fantastic job and that Mum is wonderfully looked after. Add that to the real possibility that their very presence and constant questions stresses you and Mum so much that you will be displaying anxious and possibly hostile behaviour when they visit, plus the fact that you have declined to demonstrate that you do indeed have family support and time to yourself, they are possibly very suspicious. Perhaps you don't fit the profile they are used to?
My Mum has had a pressure sore on her heel. When discovered I called in the District Nurses who turned up every day for a while to dress it and have signed her off with a friendly 'call us if needed'. However Mum does have a lot of care visits so maybe they assume that she is well monitored by outside agencies?
I believe, but might be wrong, that you do not have to allow social workers etc into your home at all, that they don't have any legal right of access. Especially at midnight. Better check that one.
Elaine

[bowlingbun]

Midnight!??!

That's harassment,I'd be scared if anyone at all knocked on my door at that time of night. If I found it was someone checking up on me, I'd tell them where to go. It's outrageous.

[Scruffy]

Hi and thanks to everyone who replied. On the day they had their meeting I also had a telephone consultation with a carers advice place and was given a few ideas with other things being done for me with referring me to other places who would be in touch.

I learned that with me having power of attorney the only way round this for them is if they can find a safeguarding issue where I'm putting mum's life in danger.

Well yesterday when this same pushy negative nurse turned up she told me someone from social services would be phoning me for a chat, she said he was a 'nice guy'. Pfft.

She then proceeded to ask me a couple of questions he'd asked her to find out. One being 'Has mum got or using a standing hoist'. She doesn't it's a full one but that revealed to me what they were after doing because back in 2012 when we had previous problems over not wanting carers and being put under pressure to have them mum was provided with a full hoist but I had said that I'd thought a standing hoist would be better as they hadn't tested her upper body strength which is pretty phenomenal even now.
I was told then by the awful bully of a social worker who had made mum cry through the bullying to accept carers, that if I were to get a standing hoist they would deem that to be putting my mum's life in danger.

Hey ho back to the present and we have this 'nice guy' trying to sneakily find out if he can get us on a safeguarding issue.

So straight after this I got on the phone to an advocacy service, gave them all the details, listed all the dates carers had been mentioned which he said was excessive. He is going to get back to me by the end of the week.

The 'nice guy' social worker didn't call. I wonder if he'd had the answer from the pushy nurse and realised he would be bang out of order contacting me to push again for carers.

I'd like to know if I can ask for the pushy negative nurse to be prevented from coming out to us and have someone else in her place. With all the negative things she's said, some of which I strongly believe to be said to back up their agenda and unlikely to be as bad as she makes out, just seeing her on the doorstep makes me feel queasy and light headed. I endure her presence never knowing if she is going to spring something else on us or make some other claim.

I've spoken to one other organisation who I'm keeping informed of developments in case I need their involvement.

The evening nurses are coming between half seven and half eight which isn't too bad although they were having a sing song last night with mum which prevented her from being relaxed enough to sleep until after eleven oclock but I think they meant well so I'm not complaining that much although one of these two nurses was on my case about 'have you been out this week' and 'have you been out today' ?

Oooh just change the blasted dressings and leave.

[Scruffy]

I've been telling them that I'm able to get out and have people to sit with mum and family and friends visiting regularly but they don't seem to take it on board. I get the feeling they now think I'm making it all up but I could actually prove everything. I've got a website showing where and when I've been and has photos from my weekly afternoon out. I really don't want them knowing about this website though as I wouldn't want to feel they were nosing at it or keeping track of where I am or am going.

I may mention it to the advocate so he or she could say they've seen proof that I'm capable of getting out regularly.

The thing is, with the pushy negative nurse claiming things are so bad with mum this is having the opposite effect than the one she intended because I don't feel comfortable going out to enjoy myself if mum isn't doing so well.
However several other nurses have constantly and regularly told us that mum is doing well, that the sore is healing, the sloughy stuff is coming off nicely, it's making progress, that it had obviously been worse but was doing well now etc.. all comments I've kept a note of and then this negative nurse claiming it's several stages worse to back up the 'matron' who she brought in to put pressure on us to have help.
I just don't believe that nurse when so many other nurses have made opposite comments.
I've also witnessed her manipulate mum's pulse rate to justify something she wanted doing.

She took mum's pulse after rolling her over in both directions to change the pad under her, instead of taking it when she first arrived when mum was calm. She then said that the high pulse rate was a sign of infection but the swab came back to say there was no infection.
I just don't trust that nurse one iota.

I'd like her taken off mum's team but don't know how or if I can. She seems to be somehow in charge or the one making most decisions.