Fed up with changing care workers

[Blue Mermaid]

Mum has advanced Parkinson's Disease, Dystonia, a serious shoulder injury and other problems.

I was caring for her on my own up until April, when she was admitted to hospital. She came home in August with a care package, as I was unable to cope alone any longer.

Since then, we've had 6 different live-in carers. The 7th will be arriving this week and we're so fed up with all the changes. It's hard enough adapting to a stranger live in your house but we have to keep doing it over and over again and all in the space of 4 months.

We've even had to cope with one of them being a thief! How unlucky was that? The first time we've had care workers in the house and one of them is a criminal. I might have to appear in court as a witness. That's all I need!

I still have to help a lot with the caring and still end up doing the night shift. That was the hardest part when I was coping alone. The live-in carers are supposed to help at night but they are all reluctant to do so. The one who is here at the moment doesn't even know it's part of her job. We had words about it today and according to her, she's only supposed to work during the day.

Mum had diarrhoea last night, so I had to wake her to help me once. She left me to it after that. Mum asked her what she should do if she had diarrhoea again tonight (she had another episode before bedtime). She said, if that happened she would come and change her pad but her tone annoyed me again. I thought to myself, 'that's big of you'!

The manager did confirm to me today that they are supposed to help at night if needed.

When Mum had an impacted bowel a while ago (an ongoing problem) and was screaming with the pain, the live-in who was here at the time just went to bed and left me to cope all night on my own. She was very good at first but as time went on, she stopped helping at night. I started to feel resentful but never discussed it with her. I remember when she gave me her last time sheet to sign, I really didn't want to sign it, as she'd written the usual '24 hours' under each day. I hesitated but still signed it.

I had an argument with the current live-in care worker today. First time this has happened with any of them. Even if they've really annoyed me, I've managed to keep it together and not shown it.

She asked me yesterday if I could come downstairs earlier today, so that she could go into town. I had stayed in bed until the afternoon, as I'd been up all night with Mum. I said yes but thought to myself afterwards, it depends if I'm up with Mum all night again. I need my rest. I have an illness too. If she wants me to get up earlier, then she needs to help at night.

Anyway, as I said, Mum had diarrhoea, so I was up all night with her again. I didn't get to bed until 6 am. I did remember about the care worker wanting to go into town but decided I wasn't going to get up just for her and that she should take into account that Mum had been ill in the night and should go the next day. I also thought she shouldn't be going so far in case she was needed.

She came and knocked on my door to get me up in the end. When I came downstairs, Mum was giving her our phone number, in case she got lost. I asked if we could have her phone number too, in case something happened to Mum and we needed her. She gave it to us reluctantly, saying she didn't understand why we needed it. She was entitled to her 2 hour break by law and shouldn't be interrupted. She said that was "respect". Her english is very poor by the way and this is very difficult for Mum, especially, when she has episodes of confusion or when she's in severe pain.

Anyway, that's how we got into an argument.

She's had her 2 hour break every day uninterrupted (apart from one day when Mum needed the commode. 2 carers needed for that. She just took the rest of her break afterwards).

She told me she'd emailed the manager previously, because she wasn't happy. I'm not sure if she meant with things here, or with the agency. I told her I wasn't happy with a few things either. Namely, that she isn't understanding when Mum is in full panic mode, when her Parkinson's symptoms are not in control, when she can't stand even with 2 carers' help and her foot is frozen to the spot, twisted in painful spasm with dystonia and her legs are shaking and buckling beneath her. It's truly terrifying for her but the care worker is sharp with her and doesn't understand. She tells her afterwards she should be positive. I asked her to read a very good booklet we have on Parkinson's, as she has no knowledge of it at all. She's never looked after a client with Parkinson's before. Intense anxiety is common when symptoms are uncontrolled. I would be terrified. Who wouldn't? Mum has fallen many times. She fractured her back and that's how she fully tore the tendon in her shoulder. It's also what brought on the Dystonia so badly in her foot. She has it in her hands now too and can't grip the walking frame, as her hands are permanently clenched in spasm. She fell twice even when in hospital (idiots left the cot sides down in bed in both hospitals!).

She's also voices her opinion too much. I didn't bring this up in the argument though. She even told me to go upstairs the other day and not spend so much time comforting Mum/massaging her back etc when she was confused and in pain. She was telling me what to do in my own house and with my own mum! It's not the first time one of the care workers has told me what to do. I was told off by 2 of them one day when I burst into tears when Mum was crying with pain when they were being too rough with her. I was told that I shouldn't cry in front of Mum and that I should be encouraging her like they were. She was crying because they were being too rough with her when she was in pain. She didn't even notice I was crying!

These weren't the only instances of them overstepping the mark and telling me what I should and shouldn't do. This is our house and we are in charge, not the care workers!

I phoned the agency manager after the argument today. She said it was true that she should be able to have her 2 hour break uninterrupted and able to go where she wants to go during that time. They are going to send a community care worker to stand in for the 2 hours in future. They did this a while back but it was hard for Mum having to make small talk for 2 hours when she was feeling so poorly. Most of the time, there was nothing for them to do. I said they weren't needed because I was here and perfectly willing to look after Mum during the 2 hour breaks. Yes, I might need help sometimes but that rarely happens and it's never been a problem with any of the others. They've always stayed close to home during their breaks and didn't mind the odd interruption. Just carried on their break afterwards. I help them too during the day with pad changes etc and Mum still needs me a lot and I am there for her.

Sorry for the extra long post! I could say more but I'd better stop now for my sake and yours (if you've read this far!).

Thanks for listening.

PS Just checked on Mum. Thankfully, she's fallen asleep while I was typing this. I can tell her pad needs changing but I'm loathe to wake the care worker and I can't manage to move Mum on my own. Hopefully, she'll finally be assessed for a hoist this week or next. The care worker should be getting up of her own accord to check Mum's pad, because of the diarrhoea!

PPS In case you're wondering why we've had 6 different 'live-ins'...the first had an argument with the agency manager and left. The second moved up north. The third was temporary until they found someone permanent. The fourth was unhappy with working for the agency. Said they were unprofessional. Also, needed to work closer to home. The fifth had an argument with the fourth and stormed out vowing never to return! She turned out to be the thief! The sixth is the one I've just argued with and she goes home on Wednesday. We don't want her back but I don't think she'd come back even if we wanted her to!

[Blue Mermaid]

PPS One final rant and then I must get some sleep whilst Mum is sleeping:-

Tonight, I went up for a soak in the bath. I asked Mum before I went if she wanted to get into bed first (as 2 of us needed). She said she'd wait until after my bath. Mum is very rarely out of bed these days but managed it for a while today. That is why I wanted the care worker to be close enough to help if needed. Anyway, back to the bath...

When I'd got out, there was a firm knock on the door. The care worker. I opened it and she asked me to come downstairs. I asked if Mum wanted to go to bed. She said yes and for the past half an hour!

How ironic after everything she said about her break today! I'm not even allowed a soak in the bath!

[bowlingbun]

Hi Blue Mermaid, I'm not sleeping well at the moment, so thought I'd surprise you with a reply at what my lorry driver friends call "Silly O Clock"!
I'm afraid it sounds like you are rapidly reaching the end of the road as far as home care is concerned. Hopefully, this care is being funded by Continuing Healthcare? I suggest you go back to them and say that they MUST find you good reliable carers as a matter of the greatest urgency. I would also report the current agency to the Care Quality Commission. Too late for you, but might help someone else escape their dreadful "care". They should not have sent mum a carer who didn't understand Parkinsons.
Have you ever visited any of the local nursing homes? It might be better for you and mum if mum was in a good nursing home where her care was consistent, staff were properly on duty 24/7 and qualified nurses where always on duty. My mum went into nursing care from hospital when it became clear that her care needs were simply too high for any other option to work. It was a huge relief to me (I have a son with severe learning difficulties and health problems of my own.) Once mum got used to it, she appreciated the fact that she could call for assistance at any time. The home was only a mile away from me, and so I could visit whenever I wanted. We went back to having a proper mother/daughter relationship for the last year of her life, rather than me being odd job woman.
Do you know how much longer mum is going to live? I know this is a horrible question, but it is nevertheless important. How much longer are you able to give the level of care you are giving? It sounds like it's still more or less 24/7 because of the dreadful carers? If mum has a very short life expectancy then maybe you would like to soldier on to the end, but if this is not the case, then I'm afraid her needs may gradually increase even further. Is mum aware of how difficult you are finding the current situation? Usually I'd suggest counselling to give you someone to talk through this whole situation, but as things stand it would be very difficult for you to arrange adequate cover, from what you describe.

[Eun]

We have had well over 200 care workers and some of them have been real doozies. We had one in her sixties who was paralytic drunk, we've been accused of all sorts because I dared to pull them up for the way they were hurting my son. Could write a book about our crap experiences with these "people"...

Eun

[Blue Mermaid]

Many thanks for your replies Bowlingbun and Eun.

Wow 200 care workers Eun?!? I wonder how long a period that has been over? Seven sounds like nothing in comparison! Are you talking about community care workers though? We've already had many different ones of those assisting the live-ins. Continuity is important whether care workers drop in or live in of course.

Sounds like your experience has been terrible. None of ours have ever been drunk but I did observe 'the thief' drinking a can of cider with her meal in the kitchen once!

How awful to be accused yourselves when you were just trying to protect your son and get the best care for him.

Are things improving now? I really hope so.

Sorry I missed you early this morning Bowlingbun. It would indeed have been a lovely surprise to see a reply at 'silly o'clock' Sorry to read that you've not been sleeping well though. Sleep deprevation feels like torture.

I've had an ibs attack today and feeling exhausted. Lack of sleep and all the stress of yesterday probably.

I phoned the agency at 4 pm to check there will be a replacement live-in tomorrow, when the current one leaves. Also, the manager asked me to call the care co-ordinator to have a chat with her about 'our wants' from a live-in care worker.

The manager herself answered the phone. Said co-ordinator was on other line and she'd ask her to call me back. I asked whether they had a replacement for tomorrow. She didn't know! Said she would check with co-ordinator and they'd call me back. So, that was 35 mins ago. I bet they are madly calling round trying to find someone at the last minute! I wouldn't be at all surprised!

Yes, we do have Continuing Healthcare. We were very lucky indeed to get it, as I know this is rare. I remember talking to you about the whole situation in the summer Bowlingbun and to Henrietta, who sadly didn't get funding for her father. Mum hasn't had her review yet, so who knows whether it will last.

I did complain to them a while ago about the agency and asked to be switched to a different one. They said they would talk to the current agency first, as they have to give them a chance to put things right before changing agencies. I am afraid of 'going from the frying pan into the fire' if they do end up changing to a different one. I know all their choices of agency are going to be based on a 'good deal', rather than a good, professional agency.

We could apply for our own health budget but they said Mum would have to be assessed for that and I would be afraid of losing funding altogether if she was assessed from scratch.

Thank you for being so supportive Bowlingbun. I thought I might be be preached to about care workers rights!

I am totally against Mum going into a nursing home. All our experiences of her being 'cared for' away from home have been terrible. She went to a nursing home to give me some respite earlier in the year. I did a lot of research and found a place who supposedly specialised in Parkinson's Disease (not only Parkinson's though). My foot! We had to bring her home after a few days. They had no idea at all to the point of cruelty in some cases. The same in hospital each time and in rehab. I can't understand why there is so much ignorance surrounding Parkinson's Disease. It's not as if it's a newly discovered disease. Training is very lacking everywhere.

The stress and worry of Mum living somewhere else is far worse for me than the stress I feel when she is at home.

Hmmm, not far off 5 pm now and still no call back from the agency. If they make a mess of things tomorrow, I will be phoning the CHC people straight away.

How long Mum has to live is always on my mind Bowlingbun. Not because of the caring side of things but because I don't want to lose her. We are very close and I love her with all my heart. She cared for me for many many years. I've had an illness for over 30 years now. She never once complained, even though she gave up things in her life for me. She is the one who kept me sane. We are very alike and have always got on like a house on fire.

Having said that, when I see her unbearable suffering, when she can stand the pain no longer and says she wants to die, I momentarily, wish it for her too. I will be absolutely devastated when it does happen though. I will be lost without her.

We have already got the mother/daughter relationship back now that we have the care package. So, it has helped having the care workers to some extent. Mainly, because the one who stayed the longest (the one who found the agency very unprofessional and needed a job closer to home), was excellent. Brilliant at her job, really kind to Mum and fitted in here like one of the family. It was a real blow to lose her.

You are right that Mum's needs will increase further. She has already deteriorated over the last few months. I just hope and prey she never has to go into a nursing home.

I'm really sorry to hear of all your difficulties in life Bowlingbun. I remember from talking to before that you've had/have a lot to cope with. I'm sure everyone here (including me) really appreciates your kind help and support. Thank you.

[Blue Mermaid]

The agency called me back this evening. I was very surprised!

As I expected would happen, they are sending a temporary live-in carer tomorrow. She will stay until Sunday, while they organise a new 'permanent' one. At least the temporary one is someone we know and we did like her. She was very kind and friendly. She was here just at weekends for the first few weeks when Mum came out of rehab in August. She did have some irritating ways but don't we all! This will be the longest she's stayed all at once and I always say, it's when the going gets tough that the live-ins show their true colours. Mum has deteriorated since she was last here, so we'll have to see how she copes with it all. I know she likes us which is a plus! The manager told us a while ago, she asked to come back here but she had to tell her she'd already been replaced. Each weekend she came here, she always said, "I really missed you guys". It's a pity she can't stay long term. Maybe she would have turned out to be as good as our favourite.

I discussed 'our wants' , as planned, with the care co-ordinator. She listened but I hope she was taking notes!

I said the one of the most important things was that the live-in had experience of severe Parkinson's Disease. I had a whole list of the kind of care worker we need! I also discussed the night time problem. She said the live-ins are expected to get up a maximum of 2 times but only briefly each time. I had originally been told 3 times by CHC. She said we need to go back to them if Mum needs someone for long periods at night (which she does). She thought this was a deterioration but I tried to explain it wasn't. The only reason a waking night carer was not provided originally, was the expense for the CHC people. They hoped a live-in carer would be enough but said they would have to reconsider if they were woken more than 3 times. They said they would change to 12/12, which they said meant 2 different care workers. A day one and a night one. I don't know if they meant sleeping night one or waking though. As I said, they said waking would be too expensive before. My fear is if I take this up with them, they will start pushing for a nursing home. The only reason the social worker didn't recommend this before (social worker who assessed for CHC funding), was because I was here (and willing) to help she said.

I asked the co-ordinator to call me again when they'd decided on the new live-in, so they could tell us about her. I won't hold my breath for that call though, as this has always been promised in the past but has never happened.

I expressed my concern about 7 different live-ins since August and could they please find someone who at least has a desire to stay long term somewhere. She said they always try their best to do that but they can't control their personal circumstances. She said they only received our favourite one's email today giving in her notice. She started going on about her pushing the fourth one out when she wanted to come back last time. Saying the fourth one wanted to stay longer and that our favourite harrassed her to leave. That's a long story and there were faults on both sides but I wasn't going to agree with her about the fourth one, as she is 'the thief'! She's bound to hear about it at some point, so I don't think she'll be so quick to stand up for her when she learns what type of person she really is.

[Blue Mermaid]

Current live-in has just remembered to tell me that there was a call about the hoist assessment before I was up. Said they're coming here tomorrow at 2.30 pm. Honestly, she should have remembered to tell me as soon as I got up or left a note. Once again, I said nothing though.

It's great they are coming though. Mum really needs the hoist.

Going to be a stressful and exhausting day for Mum though. They'll be coming first, then the dietician who we already cancelled before Xmas is coming at 3.30 pm. Change over of carers at 2 pm too! It's all going to be too much for her I know. She struggles to cope with one appointment, let alone two.

She'll more than likely be having a bad day tomorrow anyway. She's slept the whole of today. When she gets like this it's impossible to wake her even for a drink of water or her meds. The PD nurse said it's due to advanced PD. Without her PD meds she will feel very ill when she wakes up tomorrow. Also has had no pain relief, so will probably have severe pain tomorrow. We did get the morphine patch from GP but it didn't help. Surprisingly, morphine (patch and liquid) seems to have no effect on the pain. I have no previous experience of morphine but I was under the misconception that it would just wipe out pain! Need to contact PD nurse again, to ask for patch for PD meds. It's very important for Parkinson's patients to get their meds on time and a whole day without them is very detrimental indeed.

[Eun]

Mermaid we don't have live in care workers - don't think we could stand it its bad enough having to put up with them for 2 hours every morning and two one hour showers a week! Our son was diagnosed with Duchenne Muscular Dystrophy when he was aged 6 (he is now 30) that is why we have had so many workers and different agencies over the years. I have recently been diagnosed with severe osteoporosis and told that I cannot work with our son any more so my husband is putting him to bed single handed at night despite his own health problems (should have had his pacemaker replaced 2 years ago). I can do things like put towels on the bed, fill the sink, empty his urine bag etc but under no circumstances can I do anything physical. The social worker has been given a letter from my GP but if we want people to help put son to bed they will come at 8.00pm this is no good as Rob sometimes likes to go out with his pals - clubbing, to the cinema for meals etc just the normal things that young men of 30 like to do.
Eun

[bowlingbun]

Don't worry about asking for more CHC funding too much. The Human Rights Act and the right to a family life is important, and I know that in my area there is a document which says that it's OK for domiciliary care to cost 10% more than the equivalent nursing home care. I'm sure the Carers UK helpline will have these details, or I can find them when my son has gone back to his flat at the weekend.

[Blue Mermaid]

Hello again Eun.

So sorry to hear of your son's illness. I can well understand you not wanting live-in carers. I don't like having strangers taking over our home. That's what it feels like anyway.

I can also understand the timing issue. With our package, we were supposed to have 4 drop in visits from community care workers to assist the live-in one. This didn't work out, so we stopped having them, apart from the hour in the morning for washing and dressing. With the other 3 visits, Mum couldn't go to toilet to order and they were coming earlier and earlier in the evening to get her ready for bed (sometimes 6 pm!). Often disturbing her dinner. She found each visit just disturbed her and most of the time, we just ended up turning them away. Agency, said we can re-introduce them if needed.

So sorry to hear of your severe osteoporosis as well (Mum has this also. Yes, you must be very careful. I'm glad you are being so. As I said, Mum suffered a fractured back from fall, due to severe osteoporosis).

I always wish there was some sort of agency, where they just had care workers on call, so you could call for one when needed. I should think that would help you too. It's not until you care for someone yourself, you realise what sort of services would really help. You probably have loads of ideas of what is needed, having cared for your son for so many years. I wish I had some good suggestions to help you and your husband.