Living nightmare

[Spiralsparkle]

Hi all

So it was 5 weeks yesterday since Mum was placed into 'temporary' nursing bed.

It has been a living hell and I don't know where to turn to next.

On meeting the manager beforehand and viewing I had a good feeling it would be ok, how wrong was I.

I wasn't made aware they had wandering residents who get agitated and go into residents rooms and don't shut up shouting for hours at a time.

The night staffing levels are awful, the standard of care of basics is lax. Drinks not given consistently and residents not repositioned for hours and hours at a time.

Residents shouting for help and ignored.

Their record keeping is incomplete and inaccurate.

Specifics to Mum not being done and medication not administered as per instructions. The list is huge and keeps growing. The hygiene of the place and staff is poor.

I've tried to deal with it informally and got no improvements so went straight to safeguarding as social worker wasn't of any help.. this has been going on for weeks and no one seems that bothered.

I also raised to safeguarding concerns of the other residents there.

Professionals who have been involved in Mum's care have advised me but then when asked by the home or safeguarding say something different.

They deem Mum to have capacity so as she keeps agreeing to stay there when asked there is nothing I can do. To me she says she doesn't like it and the noise etc is getting her down. They don't encourage her to drink and eat, I've told them numerous times the technique required and how long it will take. She needs a lot of encouragement and time as will always say no.

Mum behaviour towards me has changed since she found out she was going into the home, she thinks I decided it and that I don't care about her anymore. She is rarely ever pleased to see me.

She is at risk there and if she knew what was truly going on and not being done for her she would be horrified. She has been left in a bed of urine numerous times, she has a catheter. They don't empty the bag enough.

The bloody care system stinks and people just cover each other's backs. I knew once in one she wouldn't be coming back out.

As usual all the professionals are just passing the buck amount themselves, a theme that has been present for Mums journey

The hospice asked the complex care team to help, they didn't.

I'm worried sick and feel so ill over all of this. I was being there for majority of daytime and evening hours but I'm only going a few hours a day now for my own health. I think it will need something bad to happen unfortunately before someone takes notice of what I've raised multiple times.

The staff backs are up, which I don't care about as I will shout from the roof top for Mum but when you hit multiple brick walls from so called professionals what are you meant to do. Mum doesn't appear to be bothered if I'm there or not now, her confusion and comprehension has nose dived since being there.

I feel so guilty for choosing the place and it is killing me watching her disappear after being cared for so well at the hospice and pulling through that ordeal against the odds.

This whole thing is killing me and I have nothing left in me to fight for her anymore. She wants to stay there....So be it.

[Satt2015]

Hi Spiralsparkle absolutely gutted to read this!!

Personally I’d be making a call to the CQC and tell them your concerns, they will follow up and do an inspection, unannounced!

How in gods name do these places get away with it? How do the people that own the home and the people that work there sleep at night?!!

Huge hugs at this incredibly difficult and frustrating time x 💕

[Spiralsparkle in reply to Satt2015]

I emailed CQC but didn't hear anything back. Some hygiene improvements have been made now but still not at a good standard. They are also better at record keeping than was. The staff have lied to my face when I've asked questions I'm 100% sure of what has gone on. No confidence whatsoever in the place but can't do a bloody thing about it other than what I've tried to do.

I know I'm sure as hell not sleeping at night & feel so ill with the worry and watching Mum lost further and further to the disease. Some of the confusion I believe is down to dehydration and the same for other residents. They stink of urine. I found one resident asleep on Mums loo, I found her cos I smelt her first.

[Satt2015 in reply to Spiralsparkle]

Can you ring CQC?

Absolutely none of this is acceptable!! X

[Spiralsparkle in reply to Satt2015]

Will try give them a ring.

To be honest though CQC is just a paper tick box exercise, I don't have much faith in them either. They gave this home good in all areas in May and other I visited had good status and I know people who have ended up in hospital due to neglect.

[dollydott in reply to Spiralsparkle]

This nightmare just continues for you. It's bloody disgusting. I agree with Amanda you need to phone CQC THEY have to take your concerns seriously.

I am so sorry this should be a time where you can enjoy precious time with your mum now others have taken over her care but more pressure has been added and more battles to be fought. You are going to burn out lovely but I fully understand that you can't give in either.. This facility is not adequate for your mum's needs .

Please take time for you each day to just switch off and rest or you will become ill.

I will be thinking of you

Love Lynda x

[Spiralsparkle in reply to dollydott]

I've rung CQC this morning and they don't do inspections on individual cases . She said to keep letting them know what is happening at the home. Advised if I'm not happy with the responses I get to take it to the highest complaint service which is the social services ombudsman. She has given me the number so will await what if any action is taken by the home and safeguarding.

I think I've burnt out and it is not a pleasure to visit Mum currently as she believes I'm the one in the wrong. Hence why now only going a few hours a day to protect myself .

[dollydott in reply to Spiralsparkle]

Yes I think by the sounds of it your close to having a break down and that's the last thing you need. It's good that you have cut your hours down even though you probably continue to worry about what's happening when your not there. It's a vicious circle. Do you think you could take a full day off or even two to fully recharge your batteries. Just an idea. x

[Spiralsparkle in reply to dollydott]

Until I see improvements I wouldn't be able to not got for a full day. I worry continually as it is the time I'm not there.

Yes on the edge of a breakdown that is true.

[dollydott in reply to Spiralsparkle]

Sorry

I think I already knew your answer when I made the suggestion and I would be exactly the same x

[Katiebow]

This sounds worse tha awful Spiralsparkle, luckily Ben didn't have to go into a home, had respite in two different homes, the first was adequate and the second was the best a home could be. Ben had a lovely SALT who , when I told her that Ben was having respite in certain nursing home said she would physically drag him out of there, needless to say he never went and I pushed for a home that is not usually used for CHC funded beds. He was due to go for another week at the exceptional home but died just before he went again. It is a massive thing to do handing such a precious person over to the care of others and you should be able to demand excellent care, however we all know that it's not often the case. What I don't understand is how these homes can't empathise how that patient and her/his families feel seeing that the care isn't fit for purpose. Like you say the system stinks and there seems to be no consistency and recourse if things aren't up to scratch. I hope you manage to get something sorted for your dear mum, it's just not fair.

Sending hugs

Kate xx

[Spiralsparkle in reply to Katiebow]

Unfortunately circumstances led to this nursing home scenario , was not either of our wishes and I didn't agree to it but forced into it.

It is breaking me apart and the fact no one seems to be listening to me doesn't help.

It is a sad state indeed when this place is classed as good and is clearly not to. Basics can't even be done consistently.

We still haven't got CHC as it has been halted twice , I definitely haven't got the ability to fight for that also.

[Katiebow in reply to Spiralsparkle]

We had a local lady advertising help for CHC claims on our local FBook page, she apparently has been working in that discipline and is appalled at how funding is dished out. I can send her number if you would like to speak with her. I know she takes a small cut if it is awarded but she said that's not the reason she is offering her services. Just a thought. Xxxx

[Spiralsparkle in reply to Katiebow]

Yes please, that would be amazing. I'm sick to death of being fobbed off all the time.

I've got a complaint in currently with social services as they are case managers. Kevin worded a letter for me about legal limit being reached, I sent that to the social workers senior manager. She never replied of responded so I did a complaint last week but got to wait at least 28 days for their investigation.

[Marie_14 in reply to Spiralsparkle]

Spiral

The council will have a councillor in charge of adult social care. Can you look up the councillors on the website of the council? You will find out who it is. You could ask for a meeting with him/her. Maybe they could speed up your complaint?

Reading your post my heart breaks for you. You are in an awful position. Your Mum needs a Nursing Home. I made the same mistake and my husband was in a Care Home unfortunately. I know just what you are talking about. I found him one day with nothing to drink although he had 2 special cups and smoothies in the fridge! I know they didn't look after him properly and it's probably why he died when he did.

Can you visit your own doctor? Cry all over him/her and tell them you are going to have a breakdown. That's no lie. One thing I must tell you is that you have fought so hard for your Mum. Please don't blame yourself for a care system that is on it's knees. Maybe a letter to your MP would be a good idea though? They don't know unless we tell them? Please take care of yourself.

Love and hugs to you sweetheart.

Marie x

[Spiralsparkle in reply to Marie_14]

I need to re group myself over next few days and commence battle again...

The local MP is a total tosser. I have though got a leaflet from the local ward councillors and one has interest in social care .

Mum is in a nursing unit of an EMi and they have no clue on basic standards of care. It shouldn't take me to go in and point out a huge list of crap.

What is shocking is that no one seems that bothered by what I've told them. The community matron and admiral nurse aren't helping me when needed even though telling me safeguarding and they would do same for their Mum.

I can't see her lasting too long and someone posted above that she may have decided herself to start letting go after being placed on here.

[Marie_14 in reply to Spiralsparkle]

Spiral

Ask that councillor to visit you at home explain your Mum is in a care home and you need to talk to her about it. Tell her what you have told us and what we have said back! Ask her if she would visit you when you next see your Mum? Maybe she will? Make notes...everything they do or don't do make notes with dates.

Hugs to you Spiral.

Marie x

[Spiralsparkle in reply to Marie_14]

I'm making lots of notes & photos. I'm doing a formal complaint tonight as trying to do this amicably is not getting consistent improvements.

[raincitygirl in reply to Spiralsparkle]

Just tuned in Spiral: Although not in your country, I would have advised all that Marie is saying. Also: Glad to hear you're taking photos: Officials can always brush people's words off as being biased, over-emotional, exaggerated, etc - but photos and videos tell an indisputable story. A nanny-cam video with a time stamp on it that shows no attendance, no water, no repositioning for hours etc..

If all else fails Spiral - is there a role for the media here?

I hope you can take care of yourself, and still visit her and let her know all you are doing to resolve things - and that it wasn't your decision and you fought it.

Poor, poor woman - whatever did she do to deserve this? NOTHING!!

Hugs and tears for you. Hang in there, girl.

XXXX Anne G.

[Spiralsparkle in reply to raincitygirl]

Yes I am so glad I started taking photos a few weeks ago, unfortunately not from the beginning.

Mum believes I am the one in the wrong but that won't stop me being her voice.

If I get no improvements I will keep going higher up the chain & possibly media.

I'm.sending a formal complaint today with photos attached of some of my issues. The manager won't be able to deny it then or believe what her staff are telling her.

I told the safeguarding team on Monday I deal in fact and I'm not elaborating on anything reported. They have already seen photos .

[JCRy in reply to raincitygirl]

I must say, I thought about the local paper or media as well, or at least the mention of it, but then I can be a little too reactionary sometimes! I think you need to strengthen yourself first.

Praying for a peaceful outcome and sending hugs.

Juliet x

[Spiralsparkle in reply to JCRy]

It is hard not to be reactionary when it is your loved one at the mercy of others poor care.

[Hidden]

You have done what you can do. She may have decided to let go by staying there. I know you feel guilty but you have given it your best. Your health is important as well.

[Spiralsparkle in reply to Hidden]

Do you know what I hadn't thought of it like that. I don't know why as I said at the time going into a home will be the end of her as it is totally against her wishes.

You could have hit the nail on the head there, as she has for the last week not wanted to get out of bed either.

She did ask me in the second week there, why is there no one that can make me better so I can get out of here. She has phases where she says I've had enough and she started that again for a few days. She also aware there is no cure and hates being like it, who wouldn't .

I just wish she was kept clean at least if this is her letting go.

[raincitygirl in reply to Hidden]

Wow, Jeff - that's a very interesting possibility... If so, then maybe Spiral can gain some strength to keep visiting her knowing/believing this could be the case, and that she's experiencing mum's last months.... Hmmmm....

[Dadshelper]

That is not a good situation! When we decided it was best if Dad went into a nursing home I toured 7-8 different facilities. My findings on the extreme differences of nursing homes was incredible. There were a few I wouldn't let my dog stay in, one I'd move into (if I could afford it) and the rest were ok. My choice came down to a place that was recommended by a friend who's mom is there, she has a dementia.

You'll have to do what you think is best for her while maintaining your health also.

Ron

[Spiralsparkle in reply to Dadshelper]

Oh yes I saw a few that I wouldn't let our dog stay in either.

This one I choose has got a friend's mUm in the dementia unit and she has been OK with the care. The dementia unit has a better staffing level.

No other relative stays on site for long periods so aren't seeing what goes on and what doesn't go on.

People can talk the talk but actions aren't following.

[Suebatt]

Hi spiralsparkle

Sorry to hear all what’s happening with you and your mum at the moment

Just a thought take photos of paperwork if it’s at hand about your mum keep notes of things that are happening there also take a dictaphone which you can turn on when they talk to you (basically saying crap) then you have got it on tape for these muppets to pin back their ears

Anything with your mum take photos

If it’s gets any worse get the mp involved or local tv they wouldn’t want that so keep notes daily with times record what you can

Just a shame u couldn’t get a small camera in too so could see what’s happening nightly or when your not there

Hope you can get it sorted

Hugs

Sue xx

[Spiralsparkle in reply to Suebatt]

I have taken photos for evidence I written notes on what has and hasn't been done.

Today on arrival I discovered yet again issue with the catheter, got the nurse in as manager was busy. Then medication I pointed out to two staff at weekend was being administered incorrectly as per instructions was again given wrong. Nurse apologised . Then again a supplement that hospice put into care plan and was on discharge notes was not given today. I couldn't take photo of the notes as nurse kept hold of the folder today but showed me fluid chart.

I've had suspicions for a long time that moving and handling was not being done right as Mum kept saying arms hurt. I positioned the slide sheet in such a way I would know if it had been used or not and took photo of it. It hasn't moved for two days.

A woman who I also told safeguarding I was very concerned about has just been carted off in an ambulance.

When will someone listen to me in authority.

I am tonight lodging a formal complaint with the home, I've had enough of trying to do this nicely and again will contact safeguarding with the complaint.

I told the nurse today I am ready to explode. I have just cried on my way home about this other resident . Today she was able to speak to me, hadn't been able to for a few weeks as in such a state. She is always asleep in chairs in corridors as wanders alot. I sat next to her whilst nurse was doing catheter with Mum. She looked right at me and said I love seeing you, I told her I love seeing you too. Opened her eyes again and said I love you, told her I loved her back and she smiled and went back to sleep. Couple hours later on her way to hospital. Heartbreaking.

[Suebatt in reply to Spiralsparkle]

Hi

Just a thought have you got in touch with the local government and social care ombudsman and see if they can help

Sorry that your going through this without the backing of somebody in social care

I always said they are muppets with only a few that are very good I’d send emails all the time to the bosses about them and don’t stop till you get somewhere

Hugs

Sue xx

[Spiralsparkle in reply to Suebatt]

CQC gave me the ombudsman phone number today but as I haven't made it a 'formal' complaint yet just raised concerns they can't act until I make it formal and then not happy with the response back. I'm making a formal complaint tonight. I hadn't wanted to as want it to amicable but after another day of things not being done I've had it. They are putting Mum at serious risk with this catheter issue.

[Marie_14]

Spiral and everyone else. There is a petition on Change.org about the poor state of Care Homes. Please all sign it!

Marie x

[Spiralsparkle in reply to Marie_14]

I've already signed that, saw it on Facebook.

[Yvonneandgeorge]

Oh dear just read your post sorry but have had a lot on, this is disgusting to treat people like this, you have a right to be so upset it’s a disgrace, glad you a documenting and taking photos, just can’t believe they treat people like this. Yvonne xxxx

[Spiralsparkle in reply to Yvonneandgeorge]

I know and the apparent lack of any real concern from any professional so far just adds to my distress.

Hugs to you & George x

[Yvonneandgeorge]

It’s disgusting that no one is doing anything about it, sending you a big hug, everything crossed that you get people to listen and stand up to do something about it xxxx

[Confusedandlost]

If you are in England you will have a local Healthwatch. They do unannounced visits to care homes as part of their remit. I would also contact your local MP I know from experience once they are involved things move rapidly. Good luck and best wishes.

[Spiralsparkle in reply to Confusedandlost]

I've contacted Healthwatch in the past about other matters and they did bugger all.

Councillor or MP is my next move but want to get this complaint off today . Try to regain some strength again.

[Aprilfool20]

Hi Spiralsparkle, have been following your posts. This does not bode well. I Am becoming more terrified by the day at the lack of compassion in our society. What have we got in store? Can I ask what area you are in?

I am very lucky that at the moment I can cope with washing and dressing, toiletting and general day to day activities, although can’t get out on my own. But I know there will come a time when my husband will have to make some unsavoury decisions. I had to put my own father in a home as he was EMI but the place was not very nice and that was 20 years ago. I am not looking forward to having to leave my own home,but my husband may have to do it for his own sanity. Hope I can understand at the time.

You are to be heralded for what you are doing and you must take of yourself. I am sure your mum deep down somewhere in the abyss knows what is happening but very hard on you. Take care and take heart that the carers on this site are right behind you.

Hugs. Jayne x

[LuisRodicioRodicio]

Apreciada Spiralsparke!

Me siento abrumado e inútil para ayudarte aunque muy identificado y solidario.

Los compañeros de chat han aportado ideas muy sensatas y practicas.

Gracias por compartir tu experiencia y gracias por los comentarios de los colegas del chat. Ambos me están haciendo reflexionar mucho.

Un fuerte abrazo.

Luis

[Baileyboo]

Hi

Please don't beat yourself up over this. My husband was in a home near me and we had much the same issues. Including thinking I had made the decision when it was social services.

I got in touch with the CQC (Care Quality Commission) hoping to rectify some of the issues. That didn't achieve much either.

We were accused of giving Les a cheese scone on which he choked. The safeguarding team immediately jumped on us. It was something my mother-in-law had said. It wasn't true but we were scrutinised in numerous meetings and made to feel like criminals.

I wish you all the luck in the world with this and totally understand you reducing the time you visit your mum. I learnt the hard way when after losing Les I became very poorly. I am still not fully recovered and it's almost a year since Les left me. It's so hard to be disciplined when you feel guilty.

Please take care of yourself and rest. I know this journey is the hardest. You are human. You are not alone in your dismay at treatment in care homes.

Love and hugs

Pat

[Spiralsparkle in reply to Baileyboo]

After sending in a formal complaint this morning with photos as evidence the home has given Mum a week notice due to my behaviour and have said they may limit my visits to an hour a day if I continue to stress the staff!

[Baileyboo in reply to Spiralsparkle]

How do they get the power to do this. They are paid to look after your mum and those fees help pay the staff wages.

I can't see how they can limit your visits it's not a prison!! Is this what it comes to when you have somebody you love in their care.

It's wrong and I don't know how to advise you. There has to be something that can help. Your mum is there to be taken care of not to be institutionalised by the system.

Have you tried speaking to your MP? I was very lucky in that our MP helped me with financial matters for Les.

Try this if you can, it's your mum and it's not their place to lay down the law.

I wish I could help you. This is the 21st century so who gives them the power to do this.

I am honestly shocked that this can happen.

If I think of anything this afternoon I will let you know. You should not be treated like this.

Love and hugs

Pat

[Spiralsparkle in reply to Baileyboo]

Well she is only going to be there for another week due to giving notice after my complaint this morning.

They haven't said yet my visits will be limited but maybe if I continue to stress out the staff!

[Servena03]

On my God what a Terrible ordeal your going through, please don't think this is the norm, I live with my husband who has PSP in a independent apartment in a caring home, with Brunel Care, and 24hr care, no matter what your needs, I can tell you it is excellent the carers are wonderful, I live in Bristol, can't imagine there are such places you are experiencing, I know you are at the end of your tether could you find the strength to locate another faci!ity, hopefully with carers who CARE, they are out there. Your mum deserves better, it's not fair knowing what we have and are getting everything with need, as life is bad enough having to cope with our health issues, please try you all deserve the best help. Thinking of you please keep in touch with your progress and God bless. Jean

[Spiralsparkle in reply to Servena03]

Thank you for your reply.

The home has given a weeks notice today after I lodged a complaint and blamed me and my behaviour!

Just have to hope that we can find something better and not worse.