Any advice on carers and social services?

[tiggs72]

Hi all

Would be grateful for any direction or experiences with carers.

After dads diagnosis it soon became apparent that he wasn't managing day to day stuff very well - getting medication mixed up, not showering, forgetting to eat.

Luckily his Drs were very supportive and arranged emergency carers 3 times a day - there's ladies were fantastic however only temporary and now we are with a new programme via social services.

These carers come in 4 times a day to support meal times , prompt medication , check that he is clean and tidy and washing.

In addition on a Monday they have a longer visit to do cleaning, food shop and change the bed.

After dads fall yesterday it was apparent that these additional things aren't happening - all the notes in his file just say that they've done the basic stuff.

I complained last week that dad didn't appear to be showering properly (if at all) or changing his clothes - the social worker informed me they can only prompt and encourage???!!!

Essentially I want to keep dad in his home as long as possible - and feel if this was working correctly that would be possible!

I've decided now ill do his shopping and my best mate is going to do cleaning, bed changing and clean towels but I'm so disappointed that after all the time I spent going thru assessments of his needs, writing lists, food shopping lists this hasn't happened . The carers feedback is that he says he's fine and he's doing it himself but surely they must understand that with his level of dementia he has no insight into what he can and can't do?

The carers even knew he'd had the fall but no one had rung me?!!

Any advice or experience would be much appreciated xxx

 

[limafoxtrot]

After dads fall yesterday it was apparent that these additional things aren't happening - all the notes in his file just say that they've done the basic stuff.

We had exactly the same with Mum when she last had carers, they were supposed to help Mum make a meal & see that she ate it. However, they were only there at the most 20mins. The notes said they'd asked Mum if she eaten, Mum said yes but they couldn't find any evidence of her having eaten anything & left it at that :

The carers feedback is that he says he's fine and he's doing it himself but surely they must understand that with his level of dementia he has no insight into what he can and can't do?

Again, got the same from the carers, even worse though, Mums SW & CPN who are both attached to the CMHT say the same

I know this doesn't help your situation but just letting you know your not alone.

Lima x

 

[tiggs72]

We had exactly the same with Mum when she last had carers, they were supposed to help Mum make a meal & see that she ate it. However, they were only there at the most 20mins. The notes said they'd asked Mum if she eaten, Mum said yes but they couldn't find any evidence of her having eaten anything & left it at that :



Again, got the same from the carers, even worse though, Mums SW & CPN who are both attached to the CMHT say the same

I know this doesn't help your situation but just letting you know your not alone.

Lima x

Hi Lima

Thanks - I was wondering if I was just expecting too much! It does help to know other people experience the same difficulties! It's so frustrating because if the care was correct it would possibly enable people to remain at home for longer x

 

[Wildflower]

Hi all

Would be grateful for any direction or experiences with carers.

After dads diagnosis it soon became apparent that he wasn't managing day to day stuff very well - getting medication mixed up, not showering, forgetting to eat.

Luckily his Drs were very supportive and arranged emergency carers 3 times a day - there's ladies were fantastic however only temporary and now we are with a new programme via social services.

These carers come in 4 times a day to support meal times , prompt medication , check that he is clean and tidy and washing.

In addition on a Monday they have a longer visit to do cleaning, food shop and change the bed.

After dads fall yesterday it was apparent that these additional things aren't happening - all the notes in his file just say that they've done the basic stuff.

I complained last week that dad didn't appear to be showering properly (if at all) or changing his clothes - the social worker informed me they can only prompt and encourage???!!!

Essentially I want to keep dad in his home as long as possible - and feel if this was working correctly that would be possible!

I've decided now ill do his shopping and my best mate is going to do cleaning, bed changing and clean towels but I'm so disappointed that after all the time I spent going thru assessments of his needs, writing lists, food shopping lists this hasn't happened . The carers feedback is that he says he's fine and he's doing it himself but surely they must understand that with his level of dementia he has no insight into what he can and can't do?

The carers even knew he'd had the fall but no one had rung me?!!

Any advice or experience would be much appreciated xxx

Hygiene (or rather lack of it) is a very difficult problem with many dementia sufferers. Carers are only allowed to prompt and encourage because if people are forced or manhandled in any way it is classed as assault. Injections and blood tests are also not allowed without the patient agreeing.

I can understand your frustration with this as you are only trying to keep your dad in his own home.

Hope you can sort things out.

Best wishes x

 

[PeggySmith]

Hi tiggs,

This is such a common problem that you're having. The agency employing the carers are responsible for making sure that your Dad's carers are carrying out the tasks they are employed to do so I think your first step is to complain to the manager of the agency who may just be unaware that the employees aren't up to scratch.

If that doesn't work, you need to step it up a level. I found it very helpful to record everything that did/didn't happen over 7 days and submitted the written report to the social worker who had been attached to us. She called a meeting with one of the LA's commissioners and the agency manager. Surprise! Surprise! Things improved dramatically.

As far as personal hygiene is concerned, yes it can be difficult to persuade someone to wash but, in MIL's case, she began to stink quite seriously and I complained bitterly. I also suggested that if 1 hour wasn't enough time to shower, dress, get downstairs and have breakfast then I would be happy to go round and do breakfast. Surprise, surprise again. She immediately became compliant with washing.

As far as the shopping is concerned, they are being paid to do that so just what are they doing instead? Your Dad might not be paying for it all directly, but that just means that we're all chipping in a bit from our NI contributions. Maybe we should start up a mass protest movement. (only joking but it does make me cross).

Good luck with it all and keep complaining until they get it right

 

[retiredcopper]

Hi Tiggs,

Am I right in thinking that the care agency were put into place by Social Services? Are you aware that you can choose a care agency yourself & then arrange for Social Services to pay the bill by Direct Payments to the agency or by sending you the money for you to pay the bill?

I arranged for carers to be provided by an agency & we initially paid for MIL's care because her care package wasn't big enough for our Social Services to fund it. When MIL deteriorated a year later I got SS to re-assess her and they agreed to fund most of her care & they gave me the opportunity to either let them take over her care or for us to stick with the agency we had been using & we opted for Direct Payments so I didn't have the hassle of sorting out the bills (the agency directly invoice SS). We stuck with the same agency as the carers are brilliant. MIL gets the same carer 85% of the time & they know how to talk her around when she doesn't want to get in the shower or go to bed. I knew that our SS don't have their own carers but ring around the agencies to see who is available to do the work so MIL could have ended up with different carers all the time.

I suggest that you research the agencies in your area that are qualified to deal with dementia patients & try & get some personal recommendations. Then contact your SS and tell them you are unhappy with the care provided & that you want to choose the agency & arrange for Direct Payment or payment to yourself. At least then you will have some control of the care given as you will be the one liaising with the agency whilst SS just pick up the bill.

I wish you all the best in getting the best care for your dad,

Angie

 

[SueShell]

I'm afraid my experience of carers isn't a good one. I seem to spend more time doing most of what they are supposed to do myself which makes their visits 3 times a day worthless. The morning one is wonderful but every day a different one comes in the evening. She's only got to heat up her Wiltshire meal and pudding, give Mum some orange juice. and wash up one plate, knife fork and pudding plate. Every day I go in and lying in the sitting room is Mum's tray, plate with leftover food and pudding. Not much to ask is it, but they don't bother so I have to do it. The worry I have is that when I go on my five day break as Mum refuses respite if they don't do their job properly things will just remain lying around as Mum cannot do these sorts of things herself anymore. Quite frankly the carers cause me more worry than not having them at all! Not forgetting in this world of political correctness if Mum says she doesn't want anything to eat they won't give her anything, which could mean coming home after my 5 day break and finding she's hardly eaten anything. Do these people not understand that when someone has dementia they cannot make their own decisions anymore. If she says no then you put food in front of her she'll eat it! I've tried to explain to the carers don't ever ask her, just do it.

 

[tiggs72]

Hi Tiggs,

Am I right in thinking that the care agency were put into place by Social Services? Are you aware that you can choose a care agency yourself & then arrange for Social Services to pay the bill by Direct Payments to the agency or by sending you the money for you to pay the bill?

I arranged for carers to be provided by an agency & we initially paid for MIL's care because her care package wasn't big enough for our Social Services to fund it. When MIL deteriorated a year later I got SS to re-assess her and they agreed to fund most of her care & they gave me the opportunity to either let them take over her care or for us to stick with the agency we had been using & we opted for Direct Payments so I didn't have the hassle of sorting out the bills (the agency directly invoice SS). We stuck with the same agency as the carers are brilliant. MIL gets the same carer 85% of the time & they know how to talk her around when she doesn't want to get in the shower or go to bed. I knew that our SS don't have their own carers but ring around the agencies to see who is available to do the work so MIL could have ended up with different carers all the time.

I suggest that you research the agencies in your area that are qualified to deal with dementia patients & try & get some personal recommendations. Then contact your SS and tell them you are unhappy with the care provided & that you want to choose the agency & arrange for Direct Payment or payment to yourself. At least then you will have some control of the care given as you will be the one liaising with the agency whilst SS just pick up the bill.

I wish you all the best in getting the best care for your dad,

Angie

Hi Angie

Thanks for the advice - I put in a call to the care service today asking for a response by Monday - have decided to look elsewhere for care if I don't get a satisfactory response! The emergency care team were fab I couldn't have asked for more - this lot however make a mockery of the system.

I'm lucky I have friends who can and are willing to help but I feel sick thinking about those vulnerable people out there who have no one looking out for them xx

 

[tiggs72]

I'm afraid my experience of carers isn't a good one. I seem to spend more time doing most of what they are supposed to do myself which makes their visits 3 times a day worthless. The morning one is wonderful but every day a different one comes in the evening. She's only got to heat up her Wiltshire meal and pudding, give Mum some orange juice. and wash up one plate, knife fork and pudding plate. Every day I go in and lying in the sitting room is Mum's tray, plate with leftover food and pudding. Not much to ask is it, but they don't bother so I have to do it. The worry I have is that when I go on my five day break as Mum refuses respite if they don't do their job properly things will just remain lying around as Mum cannot do these sorts of things herself anymore. Quite frankly the carers cause me more worry than not having them at all! Not forgetting in this world of political correctness if Mum says she doesn't want anything to eat they won't give her anything, which could mean coming home after my 5 day break and finding she's hardly eaten anything. Do these people not understand that when someone has dementia they cannot make their own decisions anymore. If she says no then you put food in front of her she'll eat it! I've tried to explain to the carers don't ever ask her, just do it.

It's a nightmare but was reading angies comments about being able to choose an agency and this is definitely something I will research Monday! It makes me laugh that I had a carers assessment staying I needed to take time for myself and allow carers to help - yet this is causing me more stress than my poor old dad x

 

[Jessbow]

I employ a girl, she's a local Mum that needed a little job. She was previously employed as a carer in the community.

She does 5 mornings, (45 mins) and 5 tea times ( 30 ins) for me. She books these times, the are not hard and fast

First thing
She showers mum ( doubly incontient)
Selects her clothes with mum - always gives her choices- and gets her dressed
Changes the bed
gathers up laundry and gets the washer going
gets the breakfast ( cereal & toast)
Gives mum her meds

tea time she shows her again, gets her nighty on and microwaves a meal. Granted she leaves mum eating it, but that's my choice.
she also does whatever washing up is there- my beaker included!

All done with a cheerful smile

every 3rd weekend she swaps , I do 2 weekdays and she does the weekend ( at the same rate)

have I found myself an angel? I think so.

 

[sarahp]

Hi jessbow

Hi Jessie,

I have thought of doing this but how do you sort out employers liability, tax national insurance, that sort of thing. Also how much do you pay her? Really interested in this as might be an option for me too. Thanks xx

 

[BloomfieldCT]

Experiencing the Same Problems!

I suspected this situation was common so am not surprised.

My mum has carers in every morning and evening. They're supposed to ensure that she eats and washes/showers and wears clean clothes. In the evening they're supposed to heat up a meal. None of this is happening. They insist on asking Mum if she needs help. Mum always refuses help and they just leave. I keep being told that they can't force her to do anything. But there are things that they can do like throw some laundry in the machine, change the sheets on her bed, make it once and a while, wash up a few dishes, wipe down the kitchen surfaces, open a window, empty the rubbish bin. Meanwhile we're paying for carers who literally stick their heads in the door to say hi. Mum keeps receiving bills despite the fact that they're supposed to go to my brother. He finds her in flood of tears each time because she's convinced that no-one comes to help her and can't understand why she's being asked to pay! I've told the company to cancel the visits and was told I would be hearing from her social worker...................still waiting. I don't live in UK so am powerless.

 

[HenryG]

Who do you get to administer Direct Payments?.

Hi Jessie,

I have thought of doing this but how do you sort out employers liability, tax national insurance, that sort of thing. Also how much do you pay her? Really interested in this as might be an option for me too. Thanks xx

Your SS should be able to tell you of organisations already in place to do this for you for a fee of course, I had the opportunity to get alady from Age Concern who does everything ,including dealing with the Social Services when they want to check up that all payments are being handled properly,within the constraints they set.Age concern only charged 85p a week, and provided me with guidance on what else I could ask for within the constraints.Unfortunatly my health suffered, I ended up at A&E three times in one week and my wife had to go into respite care, at the end of this I still was`nt able to give her all the attention she needed so with a bit!!!!! of bullying from family,SS, and friends,plus a consultant psychiatrist, I said ok to make the stay permanent.Now I don`t need Direct Payments.My experience with the care workersfrom a company the SS chose was far from satisfactory,with the exception of one lady.But that is a whole new story.
Good luck,and don`t take no for an answer. HenryG.

 

[HenryG]

Assault!.

Hygiene (or rather lack of it) is a very difficult problem with many dementia sufferers. Carers are only allowed to prompt and encourage because if people are forced or manhandled in any way it is classed as assault. Injections and blood tests are also not allowed without the patient agreeing.

I can understand your frustration with this as you are only trying to keep your dad in his own home.

Hope you can sort things out.

Best wishes x

Yes it is classed as assault, the care home my wife went into were in this predicament, that is until they applied for, and were granted a DOL, ie.a deprivation of liberty, which does allow these actions to be taken without the patients consent, providing it is in the patients best interest. HenryG.