concerns over mums care

[fluffyduck]

Hi my mum has just been diagnosed with AD/VD. She went in hospital 3 months ago for a routine operation and her dementia became more noticeable. She went home 2 weeks ago with live in carers. she can not be left on her own the carer had to ask for another carer to be there at night as she was not getting any sleep as mum does not sleep at night and is very agitated from about 4 in the afternoon till about 6 in the morning. she is not eating very well and can not eat anything solid, the carers are giving her everything with full fat milk in it now as they say she should be on a high protein diet, a dietician has not seen her. mum has lost about 2 stone over the last 3 months.
I went to see mum this afternoon and she had a different carer with her who has been there since monday she is from Hungary and her english is not very good.
I was told by one of mums neighbours that someone heard screaming come from mums last night. the neighbour went into mums this morning to check that all was ok to be told by the carer that it was her that screamed because she could not speak to her daughter in Hungary and that she would not do it again as it made my mum cry.We have some other concerns with the carers so my sister who is next of kin spoke to the agency manager about it and she said that she was in over night with mum and that nothing happened. I trust mums neighbours to tell the truth. mum has not been assigned a social worker, so I feel that we have no one to go to and myself and my sister are very worried about our mum. they have also said that they can not have a conversation with mum which is wrong as we all have great chats with mum even if it is mostly repeated.
please can anyone advise us as to what we should do we just want mum to have the proper care.
we have all found it very hard these last 3 months we feel we have lost mum and when the hospital said that mum going home with live in carers would make it better for mum and for us we believed them but it seems worse we are more worried her safety. sorry its a long first post.
Thank you

 

[love.dad.but..]

Before we moved dad into a care home last year, I tried 2 live in care agencies, the first carer (Romanian) I felt I could trust as far as care was concerned but the company sadly lacking in many areas. The second company I used, the carer a South African was shocking. Very inflexible to dad's needs, showed a complete lack of understanding and expertise in dad's moderate stage of VD. I covered the carer's daily 2 hour break and on arriving one day to be told that she had not offered or made a hot meal the day before which was clearly in the care plan (dad wouldn't understand what he was being offered to eat and can't make those sort of decisions), she exploded at me in temper and continued to berate me until her company told her to leave. I was totally shocked and realised Dad was too vulnerable to left 1-1, my gut instinct from the beginning was that I had a niggle about her (she had only been with dad for 5 days before this happened), something I couldn't put my finger on. However I am glad she showed her temper with me there and although I was very unhappy with the company's response when I phoned them to tell them what had happened and that this carer should be placed elsewhere, I would not have trusted her again alone with dad. I would trust the neighbour's and question carefully what is going on, as I have said in previous posts live in care with the right carer with expertise should work but unfortunately it seems the expertise and understanding is lacking and clear spoken English for a dementia sufferer is essential to help them have a chance of understanding anything at all. I also wonder if full background checks are taken out on non UK nationals and there seem to be a fair few in the care sector, The way this carer suddenly exploded made me wonder if there was an underlying mental instability, but phew thankfully I was there to witness her appalling behaviour. Neither dad nor I deserved in his own home to be verbally abused. I reported the matter to CQC as I was so concerned that she would look after someone else in this manner. The agency boss after over a week, reluctantly accepted my version of events and had suspended her, I'm guessing he didn't get the full picture from her account.
All carers should be professional at all times in the client's home, treating the client with complete respect. Screaming at her daughter in Hungary whilst looking after your mum, if indeed that is what happened and I would be sceptical, is totally unprofessional.

 

[fluffyduck]

Before we moved dad into a care home last year, I tried 2 live in care agencies, the first carer (Romanian) I felt I could trust as far as care was concerned but the company sadly lacking in many areas. The second company I used, the carer a South African was shocking. Very inflexible to dad's needs, showed a complete lack of understanding and expertise in dad's moderate stage of VD. I covered the carer's daily 2 hour break and on arriving one day to be told that she had not offered or made a hot meal the day before which was clearly in the care plan (dad wouldn't understand what he was being offered to eat and can't make those sort of decisions), she exploded at me in temper and continued to berate me until her company told her to leave. I was totally shocked and realised Dad was too vulnerable to left 1-1, my gut instinct from the beginning was that I had a niggle about her (she had only been with dad for 5 days before this happened), something I couldn't put my finger on. However I am glad she showed her temper with me there and although I was very unhappy with the company's response when I phoned them to tell them what had happened and that this carer should be placed elsewhere, I would not have trusted her again alone with dad. I would trust the neighbour's and question carefully what is going on, as I have said in previous posts live in care with the right carer with expertise should work but unfortunately it seems the expertise and understanding is lacking and clear spoken English for a dementia sufferer is essential to help them have a chance of understanding anything at all. I also wonder if full background checks are taken out on non UK nationals and there seem to be a fair few in the care sector, The way this carer suddenly exploded made me wonder if there was an underlying mental instability, but phew thankfully I was there to witness her appalling behaviour. Neither dad nor I deserved in his own home to be verbally abused. I reported the matter to CQC as I was so concerned that she would look after someone else in this manner. The agency boss after over a week, reluctantly accepted my version of events and had suspended her, I'm guessing he didn't get the full picture from her account.
All carers should be professional at all times in the client's home, treating the client with complete respect. Screaming at her daughter in Hungary whilst looking after your mum, if indeed that is what happened and I would be sceptical, is totally unprofessional.

Thank you for you reply
i have not slept much been worrying about mum all night. i am going to phone the manager myself today to see if she will listen to me. there has been so much not right since she took over mums care on Monday. she couldn't use mums cooker untill Wednesday so we dont know what food she was given mum. mums washing was all over the garden as she only drapped it over the line, i picked them up. she forgot to get milk out of the freezer so i went to get some more. i have a hour drive to see mum and can not go all the time as i work so when i am there i want to spend time with mum. yesterday i was there for 2 hours and spent about 20 mins talking to mum because i had to help sort things out for the carer and went to the chemist twice to sort out mums meds.
I have been reading post on here since mums diagnoses and it has helped me to understand this terrible illness so thank you everyone who post it does help.

 

[Essie]

Hello fluffyduck

Gosh what a dreadful situation for you, your sister and your poor Mum. I can well understand your distress and sleepless night.

I don’t know which part of Dorset you are in or if Mum is somewhere else but even if Mum is self funding you can contact the Dorset Adult Access Team on 01305 221016 and speak to someone for help and advice. Tell them that Mum is a vulnerable adult and that, in view of what the neighbours have reported, your concerns are serious and immediate. Dorset SS also have a list of home care providers -https://mylifemycare.com/directory-of-home-care so you may be able to find alternative help quickly from there and if the current providers are listed you can point this out to SS too. Ask the SS about emergency care options, both in home and residential as Mum may be better off having a couple of weeks in a local care home/nursing home whilst you and your sister arrange care you are happy with.
What you are describing is not OK in terms of basic care provision and I too would be very concerned about leaving Mum in the ‘care’ of this agency any longer.

good luck

 

[MerryWive]

For combatting weight loss

A small, but maybe critical, practical point. If you have not already, find out about Ensure/Forticreme, it comes like a yoghurt or a drink and it is like a high-calorie meal replacement. The doctor can prescribe it if you badger them enough, you may need the dietician in first. Basically you have to tell them until they listen to you that this is what she needs. (You can buy them also from the pharmacist, but they are expensive.) At one point that is all my mother-in-law could eat, and it probably saved her life. (She was six stone, now about eight!) They may only prescribe them as a replacement meal, but I think when someone is losing weight, it is good as a supplement as it is extra calories. [NB I am not a doctor or a dietician, just my opinion!!]

FWIW we also had problems with live-in carers, we went through about 30 altogether before we found one good one. The agency gave us a hard time, but there is no point having someone there who is making everyone feel uncomfortable.

 

[Essie]

good point Merrywive, My Mum had Ensure - it comes in milkshakes, yogurt drinks and milk pudding forms and there is an new, extra concentrated version now which is double strength in calorie terms. And Fortisip is more of a fruit drink consistency if that's a preference over milkshakes etc. Mum had them prescribed by the dietician and I do remember the GP moaned because of the cost but they were a necessity for Mum and they are such a good way of getting calories into someone who may not have a huge appetite. And yes merrywive, you do have to push to get them - like most stuff unfortunately!

 

[fluffyduck]

good point Merrywive, My Mum had Ensure - it comes in milkshakes, yogurt drinks and milk pudding forms and there is an new, extra concentrated version now which is double strength in calorie terms. And Fortisip is more of a fruit drink consistency if that's a preference over milkshakes etc. Mum had them prescribed by the dietician and I do remember the GP moaned because of the cost but they were a necessity for Mum and they are such a good way of getting calories into someone who may not have a huge appetite. And yes merrywive, you do have to push to get them - like most stuff unfortunately!

Hello Merrywive and Essie
thank you for your replies. I will talk to my sister about phoning, the agency was contracted by the hospital, so we did not have any say. none of the family is happy with the carer and we all worry all the time luckily mums neighbours are very good and have known us for a very long time and they are also keeping an eye on things.
Mum was having fortisips in hospital, it was the only thing she would have apart from ice cream. the carers decided that mum should have milk shake instead we have questioned it but no one gives a straight answer. it has been hard these last 3 months with mum in hospital and we thought it would be better when she got home but it worse. my sister and I are even talking of taking time of work to stay with mum
it is hard enough coming to terms with what mum has got without all of this with the carers.
Again thank you it does help.

 

[Cookiesam]

Hello

If the agency was contracted by the hospital, your mums care maybe NHS funded rather than local authority, in which case, they may not give you a SW.

If its NHS funded, your mum could be eligible for a Personal Health Budget. Which means you and your family (on behalf of your Mum) have choice and control over how she receives her care. That could be changing the agency to one of your choice or employing your own staff. There may be a local support service that can help with this.

If funding is via the local authority, you can choose to have a direct payment. Again, similar to a Personal Health Budget, you have choice and control over how your Mum receives her care.

What you have described is unacceptable and the agency should be disgusted with their service. As already suggested, report them to CQC.

You do have options. Unfortunately, youre probably not being told what they are.

The recent changes to the Care Act promote personalisation and choice and control.

Good luck and hope this helps

 

[fluffyduck]

Hello

If the agency was contracted by the hospital, your mums care maybe NHS funded rather than local authority, in which case, they may not give you a SW.

If its NHS funded, your mum could be eligible for a Personal Health Budget. Which means you and your family (on behalf of your Mum) have choice and control over how she receives her care. That could be changing the agency to one of your choice or employing your own staff. There may be a local support service that can help with this.

If funding is via the local authority, you can choose to have a direct payment. Again, similar to a Personal Health Budget, you have choice and control over how your Mum receives her care.

What you have described is unacceptable and the agency should be disgusted with their service. As already suggested, report them to CQC.

You do have options. Unfortunately, youre probably not being told what they are.

The recent changes to the Care Act promote personalisation and choice and control.

Good luck and hope this helps

thank you cookiesam

mums care is nhs funded. we have not been consulted very much on anything they wanted mum out of hospital so they could free up a bed. i will show my sisters all of the replies, we are having a meeting tomorrow as we live in different parts of dorset and all work.
the house mum lives in my sisters and i was born in it is our home but yesterday when i got there the door was locked and chained (mum could not open the door) i felt like a stranger in my home. we just want mum to be safe and looked after the way she looked after us with love.

 

[MerryWive]

NHS funded care

Hi again, just to say, my MIL's care is NHS funded (continuing health care) Cookie Sam is right, although I will say we have considered Personal Budgets several times but no one seems to know really how they work, it will really vary from area to area as to how organised they are in that respect. It does seem like a good idea in some respects, we may come back to it at some point, but for now we are managing with the agency. Bottom line is it is the people who are important, if you can get the right people it doesn't matter what agency they work for. The training they have in my experience is neglible, so don't let them boss you around and say they know best.

There is a woman whose job title is I think Health Care Assessor who sits with the CCG (Clinical Commissioning Group) and assesses whether the person (your mum) qualifies for funding (they don't make the decision themselves they just prepare the documents for the board and possibly make recommendations). What happened with us is she visited my MIL in hospital and said she qualified (we didn't understand what that was at the time). We had problems with the 'default' care agency and my husband tracked down a specialist dementia care agency and begged the woman from the CCG to engage them. I guess it is a lot of paperwork on their part, but they agreed (maybe because my MIL was in such a terribly bad way.....) The new agency turned out to be shocking so that didn't work out, but the point is they can change agencies, and probably even have some other standard ones on their books. We have found a few good carers but they were thin on the ground, I think you will have more luck out of London, in the end I quit my job to be a full-time carer for my MIL paid via the care agency, that is another story, but am just mentioning it as that is another option they don't tell you about!

It sounds to me like you need a meeting with the CCG health care assessor and probably the placement manager from the agency and see if you can work something out. If you have not got the contact details for the CCG (I am guessing you don't) you will surely get a lead via google, then make some phone calls!