About a year ago I phoned the care company to tell them Colin had a standing hoist and was told the carers can only use it if there are two people to control it. I told them I was the second person and was told that was fine. Today I had a phone call from the care company saying they had been in touch with CHC to see if they would fund an extra 15 minutes in the morning as a carer had said they need more time and it had been granted. I was very happy.
This afternoon the care company phone again. The conversation was as follows:-
Hello Mrs H. I'm ringing to tell you that you will have to use the hoist on your own, is that OK?
So when I am struggling, big, strong L (male) will just watch me?
Yes.
Why?
Because carers are not allowed to use the hoist.
I was told they can if there are two people and I'm alway there.
No, they can't use it at all, but they can do all the personal care.
I'm quite capable of shaving, showering and dressing. It's transferring I can't do. Are they allowed to help put the belt and harness on?
No
Are they allowed to wheel it from one room to another when Colin isn't on it?
No. If anything goes wrong we would be liable. They aren't allowed to touch the equipment. It was at this point I thought I would cry....quick pause, Lord, put the right words in my mouth or I will cry or slam the phone down.
OK, thanks for letting me know. Please cancel the carers from now on. I'm quite capable of doing all Colin's personal care and I have no intention of struggling with a hoist whilst being watched. I'll ring the CHC manager now and ask her to change to a care company who are fully insured and are of help to me, goodbye.
No wait Mrs H. Can we come and see you tomorrow?
Not if the conclusion will be the same. That would be a waste of your and my time. Goodbye.
No wait. We will do a risk assessment and if it's deemed safe maybe you can work together.
OK, 3 pm will be convenient, goodbye. I put the phone down before she could say anything else.
And it was only the other day I said on this site that I couldn't do without the carers.
Today I nearly cancelled them.
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NannaB
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If it is supplied by one of the ot department there should be no problem. The company we have got will help in any way they can even using the rotastand (private purchase) and if i am acting as second carer there is no problem with hoisting or using rotastand. I would fight for the service that you want and don't forget to point out that you can take your custom else where suprising how many comprises they will make.
Our company know i can still do Brian on my own so they seem to accommodate our requirements.
Im sorry NannaB but if J reaches the point of hoists and god knows what he will have to go into a care home too much is too much and enough is enough . At the moment I can still walk him to his room to bed etc when the time comes like that then Im out.
Sorry to sound harsh but there is no point in killing yourself in all this x
I hate the thought of Colin going into a care home but I told him very early on that I would look after him at home for as long as I was physically and mentally able. I agree there is no point in killing myself struggling to cope. If I did, he'd still end up in a care home but I won't be around to visit him.
Oh Bev you could do without that. I know you are capable of dealing with this but I feel so angry that you should have to. You are doing so well in unimaginable circumstances. You tell them, girl !!!
i would like to say I can't believe a caring profession could act in this way, but unfortunately we all know it's only too true. Who do they think they are? How on earth do they expect you to cope, or do their job properly if they can't lift Colin? Is it because you have provided the hoist? Surely, the powers at B, are trying to save money, how can this happen, if the state has to provide every bit of equipment, our loved ones need.
I had my favourite OT on the phone the other day. She has been in charge, of trying to get better assess to our home for S. I have to admit, I can't help being rude to this woman, I have never felt this way about any human being before! Anyway, she was having a go at me, because I haven't replied to any of the quotes she has got companies to provide me. i told her I haven't received them and wasn't likely to give the job to anyone, who couldn't reply to me, couldn't get a quote within Six weeks. She just didn't get it, she had had the quotes, so what was my problem! If they were going to pay, it might be different, but who, in their right mind, is going to deal with a company, spending big bucks, on a jobs worths say so!!!
NannaB, I am so sorry you have had to go through this, it really isn't fair the way we are treated sometimes! As if we haven't got enough on our plates.
I hope you manage a peaceful and uneventful Christmas and manage to find the time for a few laughs and a "couple" of glasses of wine!!!
Prayer answered in that the Lord gave you the right words to be in control of the situation, to the point that you had them rethinking what to do! They thought they could bully you into submission! hahahaha take that you carer agency! NannaB will not be pushed around!!!! Well done, friend, well done!
This is horrible! I'm amazed you kept your cool as well as you did. The whole carer situation is ridiculous and we are having huge troubles with it too. I am so grateful for the individuals who actually do the work (mostly hard working, caring and efficient) but the way their calls are organised by the management and the lack of communication between all the agencies involved and with us, the clients, is extraordinary. It is a full time job just trying to negotiate it all.
I do hope you get this sorted out and get the help you need with the hoist. Do let us know what happens next ........ we are awaiting part two with interest!
So sorry to hear what has happened, just so wrong, it is just quite barbaric sometimes how we are treated, I hope it gets sorted for you both, sending love and hugs xxxx
Unbelievable- what on earth are they playing at - surely they are trained to use equipment ? I think your conversation was remarkably restrained I think I would have blown a fuse and my combination of swear words would probably have blacklisted me for years !!!! My three carers who come in for V will try anything . They have used the hoist standing aid - the return stand - they will even take V out in the car wheeling her up the ramp into the back . They are so kind - they were looking after a lady who had multiple sclerosis for several years and who could hardly move from the neck down - they drove her to a Tom Jones concert in Wales and they took her on holiday to Cornwall to give her husband a break . I am hanging onto them for dear life as I know they will be there when V's needs get more demanding ( and they do all my ironing and ask what else they can do as V doesn't like people sitting with her - I must have the cleanest house in our village ). Its only when I hear stories like yours I realise just how lucky I am to have them . All I need now is CHC funding and I can have them in more often .
Good luck with your meeting - I don't rate their chances NannaB when you give them your undivided attention !!!!
Yes I'm not surprised. So do we! Can't wait for my next trip - we are coming on 8 January to stay at Exmouth and see all our friends and my mum. D has got much worse since our October visit and not sure how I will cope with him away from home, but still determined to do it. I know this will probably be the last time.
Hope it goes well, Vikki. It is important to keep on as long as possible. We are going up to Yorkshire and I am anxious too. He gets so tired that I sometimes wonder if its worth the effort. Then we'd both just sit !!
o bed I know exactly what u mean . they wouldn't consider me using the house with one carer either . I have to have the two always , they are not allowed to eat the house even alone .
i don't have the hoist you move around I found it far too heavy for me to use but like I told you I can manage the ceiling hoists fine .
I would much prefer to have just the one carer and we work together big they wouldn't allow it .
I find having th areas frustrating . I takes over . I don't mind in the morning that's the hardest time for me and first thing in the morning .not my best time .
good luck bed I hope it gets sorted soon . as if you haven't enough stress in your life without that
you would manage the ceiling hoist bev . can colon still use his top half . except when John is frozen he still has a little strength so that if I prompt he he will relax enough for me to raise his back for me to put his sling on . don't think I would manage if he wasn't able to respond though .
Unfortunately Colin can't move his upper body when I ask. In fact he seems to pull against me. He flops forward when sitting on his commode but pushes back when I try and fit the strap.
John was really good yesterday his head was straight and he could see the to , when we got him up this morning I thought he seemed a bit confused but he is mostly slow first thing anyway . he was speaking in hushed times And poor control of his mouth . this does happen a lo . he was aware when was happening but mixed up speech . manage his breakfast and went if again miss if the day . hav some soup and free caraml and h switched off again . I managed to get him ink bed leaving his slongstillaround his back thinking he would want to get up maybe for commode . I have failed to get any response ever since .
can't even giv him he night meds .. this does happn as I have said but it's so frightening isn't it ,
jOhn use to be like that . If I asked him to raise he would go back lift a leg or arm would offer the other one so frustrating isn't it .
I have found finding the the word to prompt helps but I am sure you know that already ..
I don't know why but John has improved with that .
My daughter got a a soup maker for Xmas . I think it's useful not have to watch over it . But , I think that's not helped given him to much fibre . I though about a juicer but one that removes the fibre .
It's getting the right balance isn't it . One minute can't go then all hell lets loose . His tummy seems to have calmed a bit . Hope so .
My neice has serious celiac disease she had found removing the fibre she can tolerate the juice better . Her motion are much improved .
. I gave him som thin porridge this morning . I a, finding it hard now to find food more suitable to how he keeps changing .
When the CHC lady told me that because I know John is unpredictable he isn't !!!!! Well all this I can predict will happen I can't predict when can I . That's all still ongoing . Everyone blaming each other . Have been having e mails back and fore , asking me lots of questions which I have already told them . .
Yes you are correct. It is getting the balance right but it's not as easy as it sounds is it? The district nurse called army request as Colin's sore is getting bigger. I've been putting him back to bed after meals but she has told me to keep him in bed as much as possible, feeding him there as well. The cushion they provided for his chair is very thin and another was requested ages ago but like the hoist, we are still waiting. It's unfortunate that not only has it coincided with the long holiday season but the NHS in this area have changed suppliers of equipment, causing a delay in not only deliveries but also collection of unwanted equipment. Very bad timing for us.
Your comment about answering questions already answered made me smile. I feel like recording all relevant information and putting it on play every time someone calls.
Johns chair is the same . Social services had it customer made for him ,very grateful but not really good the mechanics are great the back is independent of the legs , easier to get behind when changing clothes .
The cushions awful . I have got pillows at the back now . A support raiser cushion under the thin foam seat part . .
I have had to leave the dressing fr his bottom because when they are removed it has broken the skin. I use Bepanthem or Suda creme.
The care cane last night as I was commoding him . I saw to his bottom after he had finished and she did his front part . She goes too quickly , with the result my morning carers who don't miss a thing found he was red and sore in the grain , this makes it bleed . I am vigilant . I know the night carer thinks I get in the way and fuss too much . I know better than anyone though . Same as you .
I have suggested an air cushion but they told me no .
I hope you get the joust sorted soon , that should help a great deal . They left him in bed this morning and yesterday . I have worked out how to put his trousers on , took a while but got it now , then I put his pad on ..
John only wears joggers now though and is lot the front and under to get better access l no one can see he keeps a shawl over his legs anyway .
If u get stuck I will tell u how I manage Bev .
John never wore joggers before , was a shirt and tie man or smart casual . After he finished work .
I'm leaving pants and trousers off now and putting a cover over him to hide his modesty. If I know someone other than carers come I put trousers on. The other day 3 friends came unexpectedly and one bought her boxer dog who kept nosing Colin which he liked but I was sure he would pull the blanket away. He didn't thank goodness.
I have been doing the same thing since he has been staying in bed so much . Been puzzling the best way to cover him ..
I have come up with an idea . I will get a nice new fleece blanket and make in into a pillowcase shape . Leave a flap but not to tuck in . It will keep them warm all round the legs then won't It make the one side longer so that it will cover all the front . Only need enough to go under the legs up to pass the knee ,
Could even out a zip on one side to access if using a urine bottle or sheath ..
Might patent one to go with my mirror and light lol
Way to go Nana B. Sometimes you need to stand up to them. I have never heard such a load of claptrap in my life. Hope you get it sorted and they see sense. I love the way you handled this - well done xxx
The first group of Carers tried this on but the DN who supervises our CHC sorted them out. When new company took over a year ago they were great, same ladies still so must be a reasonable group. The manager regularly comes round at least quarterly to assess needs. She checked out all equipment and did quick training for the ladies on site, similar to Marie Curie nurses. They are paid by CHC for double handling so always 2 Carers morning and evening. They boss me about telling to go out for short walk or go sit down for 20 min M likes them from the laughing that goes on. I only get to help once in a blue moon if a Carer cannot make it and then I am phoned before hand to warn me and ask if OK.
I would check with your CHC coordinator, if you have been assessed as double handed even if you are helping they should provide as no doubt they are being paid for this service.
They are to relieve you of the heavy tasks as you told me once forget the guilt take all help offered even if you let them do the jobs you think are yours and take some time out this includes hoisting and transferring.
Best wishes with the fight, hope you get what you need and C requires.
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Palliative Care, (Continued).
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