Am I expecting too much from carers?

[MX5]

Hello,

My mother has Alzheimers although she's been officially diagnosed since 2007, because we caught it early she's been on medication since that time so the disease has progressed fairly slowly. She is a very able person, but suffers with poor memory and will forget to eat and all the general hygiene factors, such as washing clothes, brushing her hair etc. Basically her life relies on prompts from those around her. She now lives with us because we found trying to care for her remotely was becoming too difficult. On a day to day basis we manage fine, but when we go away at weekends or holidays that's when it all falls apart.

To give me some support during the week, we engaged a private company who provides companionship and care support. It didn't start off well, but now almost 3 month's down the line we seem to have found a good carer who works for the organisation that carries out the duties that are required. However, this carer doesn't work weekends, so when we go away for a weekend or holiday the system falls down.

All that we require is for that person to go in twice per day, at lunch time to ensure breakfast eaten and meds taken and to heat up a ready meal from Wiltshire Farm Foods, ensure drinks provided with meal and left for the afternoon (to prevent dehydration). Prepare a sandwich for tea, leave in fridge and then call again in the evening to ensure tea has been eaten, another drink provided and another left and meds taken in the evening. Nothing too difficult there. However, on several occasions it hasn't worked, hot meals have not been eaten and some medications not taken. So you can imagine my disappointment and concerns.

So what I would like to know is am I expecting too much from an external care organisation whom I pay in the region of £18-£20 per hour for this kind of service or do I need to look elsewhere for another organisation? This company came 'recommended as the best in the area' so that gives me grave concern that if this is the best what hope do I have for future weekends away/holidays?

There seems to be a distinct lack of training within these organisations. Not all of the carers seem to know how to handle situations to get individuals to eat. I would also like to add that my mother is not a difficult person, if she were persuaded to eat she would, so in my personal opinion it is a lack of training.

I would be pleased to hear if I am just expecting too much or whether I've been unlucky. Although I was talking to a friend of a friend that has relatives that have carers and she has experienced issues herself.

I would certainly suggest if you live remotely from your relative and you have carers going in, ensure they are carrying out the duties you expect of them. It's only too clear that it is because she lives with us and that we have hands on experience and knowledge that we are better able to see what is going on.

Thanks.

 

[TinaT]

You have sadly hit on an area which is very close to my heart. The present (and past) governments have pushed the laudable idea of maintaining people in their own homes as long as possible and preventing more care home use. At the same time they have also pushed for much less local authority provision of home services and much more private services use.

What has been sadly lacking is some form of control over the private agencies supplying home care!

My dear Sister in Law is in a very similar position to yourself. She has to constantly monitor the care of her father who is suffering from Alzheimer disease. She cannot go on holiday at the same time as her only sister because someone has to be present if dad's care hasn't turned up or other such crisis which happen, not to say actually ensuring as best they can that he is getting the specified care.

Both sisters live a considerable distance from their father and are finding life extremely hard to cope with.

There doesn't seem to be any regulating body who can deal with complaints. Constant complaints to the private agencies doesn't seem to work either. I know the Care Quality Commission is supposed to regulate all agencies giving private care but they will only deal with serious complaints.

So where does someone like yourself go for help?

I wish I could give you some positive advice but try as I might I can't find any help out there either.

xxTinaT

 

[bunnies]

I'm afraid you are right about this - there is a woeful lack of training and insight among home carers, and although they are not well paid one does wonder how they can send someone in to care for someone with Alzheimers when so many don't seem to understand what the illness (at least that was my experience). I agree that by being on hand you have been able to ensure you get better service. I can only recommend that you tell the agency that it isn't good enough, and that you know your mother would eat/take her meds if encouraged in the right way, and you would like a carer who is able to do this. If you don't make demands, they will send the least capable carers. Also, I am afraid that it is the carers who are least able and therefore least popular who are available for weekend/night work, so it may be you have very little choice. But I think it is entirely reasonable to expect better.

 

[AnnRCW]

It varies

We have a similar situation and it does seem that even in the care companies the quality of carers varies. When I worked in care with disabled teenagers I always treated them as I would want my own kids to be treated.

With my mum I leave a list that the carer has to tick as they do each task. It's not full proof as last week she wasn't given her dinner because she told the carer she had already eaten!! Could you use the good carer during the week and find someone else for the weekend?

 

[choccy]

I guess I must have just been lucky with Dad's private carers. When he was still living at home I had carers visiting twice a week, 4 times a day so I could have some respite.
They prompted med's, heated 2 meals and made sure Dad was drinking enough. They would also check round the bungalow with Dad at 8pm to make sure there were no intruders (one of Dads worries) before sitting with Dad while He telephoned me before bed.
They were so good with him that I still use them now, even though he's in a care home, view come twice a week and take him out for a drive and walk in the countryside.

I pay £9 an hour for there services, plus any mileage they clock up on their trips out.

Dad has same lady to take him out every time and classes her as a friend.

It was Dad's social worker who suggested them although I don't think she was supposed to recommend any one in particular.

Sometimes I think these big agencies are far too impersonal, there are just 4 carers in the company I use.

 

[CINDYJANE]

Getting Mum to eat meals at home

With my mum I leave a list that the carer has to tick as they do each task. It's not full proof as last week she wasn't given her dinner because she told the carer she had already eaten!! Could you use the good carer during the week and find someone else for the weekend?[/QUOTE]

I think this is the same way things will go with my Mum too. She has daily care visits in the morning, but now she is losing weight although her fridge is full, she doesn't bother (??) to cook or eat. I have to keep throwing food out. I can only visit her once a week due to distance. I take her out for lunch which she eats well, so I know she can eat! However I don't think it would make any difference what the cares did to prepare her a meal, she wouldn't eat it! all they can do is tick the box to say they tried...as you said yourself.....

 

[choccy]

I forgot to mention, while Dad was at home, the carers left a book in a safe place which view filled in on arrival and on leaving and listed all meds taken and meals eaten etc. They also noted down Dad's mood, any confusion or worries etc. And anything they'd done to ease agitation, such as had a chat about bla bla or had a walk in the garden to get fresh air.

 

[SWMBO1950]

I dont think you are expecting too much for someone to carry out what are simple tasks and these are pretty identical to what I would be asking when I am on holiday (other times the carers visit my mother twice a day and I make a further visit each day).

I have come to the conclusion that no matter how good my mums carers are (which they are most of the time) there is always something I did not plan for to happen.

I know my mums carers think I am a pain but I do check everything that is done because at the end of the day I am the only one with my mums very best interests at heart and my mum (she is self funding) is paying the bills.

Maybe you could look around locally and see if anyone would like some casual work but stressing your Mums needs. Someone who works in a hospital would be ideal as they will be CRB checked so although not foolproof it does give a little more confidence.

Best Wishes

Hello,

My mother has Alzheimers although she's been officially diagnosed since 2007, because we caught it early she's been on medication since that time so the disease has progressed fairly slowly. She is a very able person, but suffers with poor memory and will forget to eat and all the general hygiene factors, such as washing clothes, brushing her hair etc. Basically her life relies on prompts from those around her. She now lives with us because we found trying to care for her remotely was becoming too difficult. On a day to day basis we manage fine, but when we go away at weekends or holidays that's when it all falls apart.

To give me some support during the week, we engaged a private company who provides companionship and care support. It didn't start off well, but now almost 3 month's down the line we seem to have found a good carer who works for the organisation that carries out the duties that are required. However, this carer doesn't work weekends, so when we go away for a weekend or holiday the system falls down.

All that we require is for that person to go in twice per day, at lunch time to ensure breakfast eaten and meds taken and to heat up a ready meal from Wiltshire Farm Foods, ensure drinks provided with meal and left for the afternoon (to prevent dehydration). Prepare a sandwich for tea, leave in fridge and then call again in the evening to ensure tea has been eaten, another drink provided and another left and meds taken in the evening. Nothing too difficult there. However, on several occasions it hasn't worked, hot meals have not been eaten and some medications not taken. So you can imagine my disappointment and concerns.

So what I would like to know is am I expecting too much from an external care organisation whom I pay in the region of £18-£20 per hour for this kind of service or do I need to look elsewhere for another organisation? This company came 'recommended as the best in the area' so that gives me grave concern that if this is the best what hope do I have for future weekends away/holidays?

There seems to be a distinct lack of training within these organisations. Not all of the carers seem to know how to handle situations to get individuals to eat. I would also like to add that my mother is not a difficult person, if she were persuaded to eat she would, so in my personal opinion it is a lack of training.

I would be pleased to hear if I am just expecting too much or whether I've been unlucky. Although I was talking to a friend of a friend that has relatives that have carers and she has experienced issues herself.

I would certainly suggest if you live remotely from your relative and you have carers going in, ensure they are carrying out the duties you expect of them. It's only too clear that it is because she lives with us and that we have hands on experience and knowledge that we are better able to see what is going on.

Thanks.

 

[Iona]

This is an issue close to my heart. Don't assume that poor care is only given by those in the private care sector. We were using Local Authority carers who were better at neglecting than caring. Some used the excuse that Mother refused help - which is probably true - but those in the know tend to find ways round the more ridiculous interpretations of current laws and just presented Mum with food and drink, which she would then proceed to eat and drink. My word of warning is that we have now discovered that a major problem was that many of the carers were only staying in the home for a few minutes, not the amount of time of time Mother was paying for. Comments written on their sheets and timings were at times. . . well lets say, less than truthful.

Poor care comes in many forms, in the home as well as in care homes; whether from private or public sector - just like good care, in fact. Training may help but some training packages I have come across on the internet are likely to result in carers doing even less for their clients (dignity and respect and all that!). And in any case, training does not equate to learning. It seems likely that poor care comes from poor management as well as individual carer's conscience and that spans the whole gamut of care providers.

Your advice, MX5 to check on what is being provided for the vulnerable is one I would wholeheartedly endorse, especially as official quality checks are so clearly woefully inadequate.

 

[meme]

I certainly think the carers you employ should follow your instructions..which may need to be written down clearly and simply..eg take ready meal from freezer and heat in microwave...make a hot drink..encourage Mum to eat it. If not get rid/complain.
In the first weeks of My mum not eating and getting LA carers in , they would ask her consent for everything, of course she said no, wouldn't let them in, said she had eaten or she could do it herself and off they went!!! I had to insist they just did it and used "people skills" to get in the door and get her food heated eg say the doctor /or your daughter sent me to make your dinner etc...so easy if approached right...I spoke to the agency boss and she agreed consent was ridiculous in this instance as their job was to get her to eat and wash her etc...so different carers and instructions from boss ended with everyone doing their job and my mum being happy and eating ! I must say it does not help that 100% of carers are not english and I suspect often simply don't understand what you are saying!

 

[rosaliesal]

Changes in dementia

whilst I am glad you have found carers to help. Have you thought of a long term plan. My mother lived at first alone in her home, refusing to live with us. However, she finally decided to get rid of wasps by dipping material in fuel and stuff it into the eves of the bungalow, then set it alight. Pefect way to smoke out wasps in her mind. Once she came to live wish us we would have to watch out for cleaning materials as one person warned us that her mother in law had used bleach instead of washing up liquid. I could give my mother a glass of water and her tablets and when I came back she would have put them down and forget to take them. Later, having taken them, she would wander to a cupboard and try to find the tablets to take them again, just in case she had not taken them. the reason for telling you this is that although you think you have it sorted now, you will not be able to just leave her and go off. A carer can make a meal and expect your mum to eat it. when she leaves the house she can not know if she has. I made so many meals for mum, only find her staring at it and wanting to leave it. It may not be the carer but that your mum's mental state has deteriorated and she does not want the food. People who care need to understand how a person with Alzheimers or dementia thinks or does not think. That can be difficult. I will eat it later can mean the food being put aside and be completely forgotten about ....even when it is sitting next to that person. a person with alzheimers does not remember, not even something this simple. So find someone with that type of experience if your good helper is unable to understand because things will deteriorate, it always does. To enjoy your life you must think it through (as you obviously are doing) but remember to include that deterioration in your plans. Your plans are not working now because your mother's illness has deteriorated and she can not be expected to remember to eat. The carer has to sit with her to prompt her to eat. However, all the will in the world can not make a person eat if they do not want it. It may not be your carer's fault that she is not eating but the illness itself. Having made your plans does not mean it will simply go ahead as expected because you are expecting everything to be normal. there is nothing normal about Alzheimers. It is hard to accept that the mum we love and know, who has always been so capable could be unable to cope with eating. Is your good carer sure she is eating or does she tell you she has to make you feel happy. Your gut feeling is usually right so there must be someone out there who has experience that can help at weekends but I feel you may not be able to leave your mum unattended. I have had 17 years experience of dealing with my mum's Alzheimers and the gradual changes each year of her inabilities. We soon had to lock the doors to prevent her walking off and getting lost, once we had two horrible frights when she disappeared on a winters day and we were out frantically looking for her (yet she could not tell anyone her correct address). The warning is just to be of real help because it is too easy to think mum is as we want her to be rather than what she has become. dids

Hello,

My mother has Alzheimers although she's been officially diagnosed since 2007, because we caught it early she's been on medication since that time so the disease has progressed fairly slowly. She is a very able person, but suffers with poor memory and will forget to eat and all the general hygiene factors, such as washing clothes, brushing her hair etc. Basically her life relies on prompts from those around her. She now lives with us because we found trying to care for her remotely was becoming too difficult. On a day to day basis we manage fine, but when we go away at weekends or holidays that's when it all falls apart.

To give me some support during the week, we engaged a private company who provides companionship and care support. It didn't start off well, but now almost 3 month's down the line we seem to have found a good carer who works for the organisation that carries out the duties that are required. However, this carer doesn't work weekends, so when we go away for a weekend or holiday the system falls down.

All that we require is for that person to go in twice per day, at lunch time to ensure breakfast eaten and meds taken and to heat up a ready meal from Wiltshire Farm Foods, ensure drinks provided with meal and left for the afternoon (to prevent dehydration). Prepare a sandwich for tea, leave in fridge and then call again in the evening to ensure tea has been eaten, another drink provided and another left and meds taken in the evening. Nothing too difficult there. However, on several occasions it hasn't worked, hot meals have not been eaten and some medications not taken. So you can imagine my disappointment and concerns.

So what I would like to know is am I expecting too much from an external care organisation whom I pay in the region of £18-£20 per hour for this kind of service or do I need to look elsewhere for another organisation? This company came 'recommended as the best in the area' so that gives me grave concern that if this is the best what hope do I have for future weekends away/holidays?

There seems to be a distinct lack of training within these organisations. Not all of the carers seem to know how to handle situations to get individuals to eat. I would also like to add that my mother is not a difficult person, if she were persuaded to eat she would, so in my personal opinion it is a lack of training.

I would be pleased to hear if I am just expecting too much or whether I've been unlucky. Although I was talking to a friend of a friend that has relatives that have carers and she has experienced issues herself.

I would certainly suggest if you live remotely from your relative and you have carers going in, ensure they are carrying out the duties you expect of them. It's only too clear that it is because she lives with us and that we have hands on experience and knowledge that we are better able to see what is going on.

Thanks.

 

[tre]

Unless I have misunderstood your post it seems that they are supplying the carer during the week who is managing to get your mum to do everything but at the weekends the people/ person they have sent seems unable to achieve this. Obviuosly the weekday carer wants some time off so the problem is to get someone who works the same way as she does at the weekend.
Would it be possible to suggest to the care agency that maybe one of their weekend carers could shadow the week day carer on one of her days to learn how she does it? I realise this will probably mean you have to pay for two people whilst this occurs but surely one day's training should be enough and I know if it were me I would find it a small price to pay to feel reassured that the weekends were being well managed.
Tre

 

[MX5]

What can we do to improve this situation?

Thanks for all the replies received to date. Just to comment on a few of those responses in order ...

I think it's good to keep a relative at home as long as possible, partly due to the costs, but also 'EMI units' are not the best places to see your loved ones go into. I do agree that the government needs to introduce some kind of control/regulation such that these organisations are assessed and need to meet certain training and service levels. So maybe that's what we should be pushing the government for, but how do we do that?

The agency are only too aware of my dissatisfaction with the service I have received to date and with a new Manager in place I hoped things were going to improve.

With regards to leaving a list of what was required by the carer, I had prepared a list of the things they needed to do (in the form of a table done on Excel, so all they needed to do was work down the list and tick each item off each day as they had done it) which included meals (and the number that were in the freezer so they would know if she’d had the meal or not) and meds (in daily dosset boxes), (a copy of which I also provided to the Manager at the company prior to the weekend visit). So you can imagine my disappointment, concern and anger when I got home to find that it hadn't been followed!

There is a record of the carer’s visits, which is completed during the week by the normal carer, but unfortunately the weekend carer didn’t fill it in, possibly because they didn’t know where to find the log!!! Althought, I was under the impression that there were systems in place such that anyone covering knows where the log is kept.

The carer logs an hour slot for the visit and I have to trust that this is the time they are here, which should be ample time to do the things they need to do. I know that some organisations are introducing call monitoring which means the carer has to call when they arrive from the number at the house they are visiting and call when they leave this will give the agency more control over times, so this should help.

A carer with good training and experience should be able to encourage, persuade or manipulate someone to do what they want, that should all be part of the training. If the individual says they don’t want to eat, the carer needs to find a way of distracting them and perhaps sit and chat, make them feel comfortable and then whilst chatting get up make them some food, perhaps take something to eat themselves and present the meal to the individual, whilst they continue to chat and eat themselves, that would be a good starting point. Making them feel comfortable and relaxed is key. If they absolutely refuse to eat that’s a different matter, but my mother is not at that stage yet.

I try not to think of the long term at the moment, I take each day at a time. The most important thing for now is keeping my mother well fed, hydrated and stimulated. She is far less confused now than she was when she wasn’t eating or drinking enough. Her memory is still very poor, but she looks better, she’s less confused – I can’t say she doesn’t get confused – she does but it’s minor confusion, for example, where she is – if we go away with her, she might still think she’s at home. As for the long term, I do know I’ll need to find alternative arrangements such as respite care when we go away and so on as the disease progresses, but at the moment it’s one day at a time. I know the future isn’t bright and things will get worse, but whilst we can give her the love and care she needs right now that’s the priority and getting the right support (care provider) to give us a break when we need to take some time out for ourselves is important. I’m an only child, I don’t have anyone to share the burden with (my son is away at Uni). I am fortunate that I have a fantastic husband and in-laws which are a great support. My in-laws will also help out by having my mum to stay if we want longer away which is brilliant, but they are getting older too ...

The shadowing idea is a good one, but because it’s not a regular weekend role, I guess they don’t know who is going to be available on that particular weekend, so they are then relying on both carers being available at the same time closer to when we go away. I try to give the agency as much notice as possible in order that they can arrange this.

I was really asking the question because I'm hearing more and more bad things about Agencies since starting to use one, and therefore I wasn’t sure if this is all that I could expect. I am slightly reluctant to change agency at this stage, as the regular visits seem to be working well, but having had several issues when we’ve been away (outside of the normal routine) doesn’t give me confidence about going away. I believe some of the carers think they just have a ‘companionship’ type role. They offer food, if it’s refused, they just accept it, sit and chat and leave. Not good enough!

So what can we do to get these Agencies to improve their training and care? What action can we take?

 

[dingly]

My mum doesn't remember to eat or drink & needs prompting. Similarly, taking meds, doesn't remember & needs coaxing. Similarly getting up, washed or dressed - would rather be 'left alone' & needs persuasion& can be aggressivly resistent. I'm told (by LA, private agency & CH/NH) that if client says' no'- that's it. Client refusals and behaviours can be used to explain any 'lack' in care when issues are raised with any care provider. Uneaten food, dehydration, left out meds, unwashed or dressed etc. However I believe 'time and effort' is sometimes the issue -prompting and coaxing is time consuming and tiring. This takes us back to the individual approach/dedication of the carer.As to weekend carer problems agree with advice above but I found continuity of care even in CH/NH can be a problem X.