Do I have unreasonable expectations of what a carer should do?

[Ceasre]

My DM suffers from a multitude of illness. She has lupus, osteoporosis, ulcerative diverticulitis, heart attack years ago and just been diagnosed with a leaky valve and in March was diagnosed with alzheimers. She is on a lot of medication which is administered by district nurses morning and evening as in Feb she took an accidental overdose which culminated in her being admitted to hospital and as she lives on her own they put a care package in place. Meds are in a safe.

DM also eats very little and carers go in twice per day supposedly to encourage eat. In reality they do nothing partly because my DM refuses to let them and partly because they constantly change them so no sort of relationship is built up. It does however mean I have some comfort in the knowledge that she is seeing people plus they write how she is in the care diary so I have some idea of what is happening.

I live an hour away but phone at least 3 times per day and pop in one evening during the week after work and 1 day at weekends. I do all the shopping and pay all bills etc. Plus deal with all appointments and go to most routine hospital visits roughly two per month. Sorry but I am trying not to drip feed.

I appreciate I need to go to appointments when information needs to be retained. But for very routine ones such as mammogram etc I was led to believe by the Doctor from memory services that social services could just book a carer for a couple of hours to go with my DM. Hospital will provide transport so it should be so simple.

DM has to have an infusion on Wednesday and I cannot go due to work. SS are refusing to provide a carer to go with her. I said if it is a case of money to cancel mornings for a week as they don't do anything anyway and District Nurse is there but point blank no. Am I expecting too much? I feel ground down by the whole lack of support that has been ongoing.

[MrsWinnibago]

I am sorry. My Mum is a carer of the sort your Mum has and she says there are good and bad staff. The worst are in and out too fast to do much encouraging of food but I think if you stamp your fooget a bit and check the timings of the visits, then the managment should kick them up the bum a bit.

ALso, is there any food that your Mum will eat more reliably than other types? My Mum discovered by accident that an old gentleman she visits in the morning, wasn't eating any breakfast as the carers he had before her weren't taking his requests for sandwiches, pasta and other lunch type foods seriously. My mum made sure he gets what he fancies for breakfast now and quite often it's a "main meal" type food...what will you do about the appointment? Can you get time off? Do you have any other support?

[Ceasre]

Thanks. I have stamped my feet so much with this agency but pretty much to no avail. To be fair not totally carers fault as mum is obsessed about people touching her food. The problem is she will only eat it if I have cooked and served it which I can only do twice a week. I tried a menu plan which mum agreed to go with. Cooked a few meals and froze them on the Sunday. Mon evening she refused it. Grrr.

I am an only child and there is only me and DM over here. The rest of the family are in Ireland apart from my cousin who is on holiday. I cannot take time off work wed as have had so much time off already. I was so upset when the social worker rang me I threatened to disown my mum and have nothing to do with her care then they would have to sort it but of course I won't. I love my mum. I just am getting no support at all from ss. Juat platitudes.

[Bogeyface]

You dont have unreasonable expectations of what they should do, but you are unrealisitic in expecting them to actually do it.

The care of my darling Grandma fell to my mum, my aunt and me, and even between three of us, it brought us to our knees. The support we were supposed to get never materialised and even when we threatened to withdraw support from us, nothing changed. They know that you wont just abandon her, they bank on that.

I wish I could tell you how to deal with this so you get what she needs but I cant, we never found a way. :(

[ICanSeeTheSun]

I know this is going to sound awful, but bear with me.

I encouraged family members to not take on responsibility for my nan, now I love her and visit her as often as I can so do other family members, but there is no way none of use could have given her the care she needed and refused home nursing.

My nan is now in a care home and I think the mixture of SS saying she can't be on her own and us saying we wasn't able to care for her ( mixed dementia)

[sashh]

My family was in a similar position. Carers would come in and ask what she wanted for dinner/tea and she would ask for a sandwich.

She went in to a care home, initially for 2 weeks while the council put a new kitchen in.

Now at the care home someone would ask her to come to the table and then ask which of 2 or 3 options she wanted. And she started to eat properly for the first time in years.

I think you should consider it as an option. Obviously discuss it with your mum but you cannot go on taking time off and running your self in to the ground.

[longjane]

Right some to go with for appointment not going to happen ever.
Even in a care home. (Might happen if you are willing to pay but otherwise not.

With any kind of dementia you have to visit daily . Just to make sure someone is eating and the carers are coming .
can afford a private carer to come in every day neighbour sometimes might do it.

But as others have said care is the best place for dementia they will get to know here. And help to eat.

[43percentburnt]

Hi are you using an agency for care? If so stop! Ask about a care plan where you interview and recruit your own carers. They get paid a living wage (I think over £8 an hour).

I believe agency staff only get paid for the time they are in the persons home. The clock stops when they leave and this means they may work 12 hours a day yet only get paid for 8 due to travel and time between calls. Yet the agency rakes in over 12 per hour, plus travel money (some of which they give as mileage).

An employed carer will build up a relationship with your mum.

Research it on line, some of the articles I read about the agency carers pay etc are disgusting. The only ones who benefit from agency care are the shareholder/company directors.

[43percentburnt]

A relative of mine has used both. His lovely employed carer came in her own time to sort him out when he fell over, he ensures she has a pay rise each year and pays for her to go out to cinema with him occasionally whilst she is caring for him. But the key thing is they have a relationship.

I have a friend who cared for three people, she became too ill to care anymore, but has remained friends. Picking up bits and pieces when she goes shopping etc calling them via phone everyday to see how they are. Again she enjoys chatting to them. But that's because she has got to know them as people not just call number 4 that day.

[43percentburnt]

It also means that if she needed to pop to hospital you could maybe pay them a couple of hours extra or ask the carer if she or he would change their hours that day.

[butterytoastandmarmalade]

Recruiting your own carers is a good way of getting around this.

I have a very good friend who is manager of a care agency, and although it isn't my trained field I help out frequently when they are short-staffed - this happens a lot! - and there are two points I think are worthy of mention.

The first one is that when I underwent some training (I had to, even though I'm only bank or relief staff) we were told people have the right to make their own decisions. We can notify our superiors but we certainly can't tell someone to go to bed, have a shower, eat vegetables and so on if that is not what they want.

The second point is time. It pains me to say it but I know with 'my' agency, your Mum would probably be a fifteen minute call. Going through the fridge, finding something she will eat, making it and encouraging her to eat it would take beyond the fifteen minutes allocated. Obviously I don't know how long your mum has been allocated but we have a LOT of people to go and see (I'm working today, I've got a total of thirty people between 11 this afternoon and 9 this evening!) and if you're delayed at one it honestly throws you off kilter for the rest of the day.

There are faults in the system and I concede there are bad carers but most are just very overworked and very badly paid for the work they do.

[Ceasre]

Thanks for all the responses. Bogeyface, at least I know my expectations are not unreasonable, I am unrealistic about SS actually doing this.

Mum lives in a council house and just has her state pension so employing our own carer(s) isn't an option unless I organise what is called Direct Payment which is just another added responsibility for me. My issue at the moment isn't really with the care agency although I do have on going issues with them which is a whole other thread. She gets an hour per day 2 x 30 minutes and does not have to pay.

My real issue at the moment is with Social Services being as unhelpful as they possibly can be, knowing my circumstances and the Social Worker is really sweet but inept and I just cant keep biting my tongue anymore. I was in tears after speaking to her yesterday evening. I just don't get how the Doctor who diagnosed her can think things are easily organised by SS. If only!

There is no question at this present moment in time of my mum going into a care home as the dementia is not that bad to warrant it. I would like to avoid that option for as long as possible as I think once that happens she will lose the will to live.

When she was in hospital in February it was scary how she was, asking about people long since dead and really not the mum I know and love. At home she has adapted and while she had done things like put her false teeth in her slippers (?) at the moment she is capable of independent living as long as all her bills are paid by me and the shopping is done she can potter around in the home she has lived in for 40 years. Obviously when things deteriorate we will have to think again.

In the interim I have at least solved Wednesday. My 16 year old son is going to go with her. I don't know why I didn't think of this before, probably because I am a control freak! He will get train and tube to her house, then the hospital transport to and from hospital. He can then cook her something when they get home so that is one evening meal solved.

It is really helpful to get ideas from people who have been through it and I am going to rope my sons in to help a bit more. They will be happy to, they love her dearly, but I feel that they should not be expected to go to hospital appointments with her. But I guess needs must!

Thanks again.

[MrsWinnibago]

I helped my nan out when I was 14 so your son will be just fine with this...I had a lovely relationship with her and caring for her really helped me grow up. I used to take her sunday lunch round once a week and after school, I'd go in and make us both tea. Looking back she was very frail but maybe due to my age, I didn't really notice and she liked me coming a lot...it was sold to her as me not being alone in my own house after school but really it was me keeping an eye on her. :)

[Floralnomad]

Perhaps you could look at moving her to a warden controlled / sheltered housing place nearer to you .

[offtoseethewizard64]

ceasre I feel your pain. I live 1 1/2hrs from my DM and am trying to act as her carer even though I am already a carer for my DD. DM doesn't have dementia but is frail - and refuses to go to hospital appts on hospital transport - preferring instead to have one of us drive for hours to ferry her there. We also use an agency who go in to her twice a week to help her shower and who are supposed to change her bed - but they never get time to do the latter as they are too busy filling in their paperwork. My DM has to pay for her care, so I have told her she must insist that they do what she is paying them for, but she won't speak up.

It is good that your DS can go and help out (presumably because it is the school holidays) but just check that the hospital transport will take him as well, as they may be doing multiple pick-ups and may not have a spare seat or some ridiculous rule will prevent them from carrying anyone other than the patient

[Clarinet9]

Surely she should be getting attendance allowance, what about disability living allowance? (can't remember the rules sorry)?
not ideal but can you go another day and change hosp appointment?

[JsOtherHalf]

I have never known social services to be able to arrange an ad hoc carer for hospital appointments, etc. I have come across medical staff who state things are possible, which turn out not to be the case.

Is your mum entitled to a continuing care assessment from the local Clinical Commissioning Group?

[Imnotaslimjim]

I know it feels like direct payment is another added responsibility, but in context it isn't very hard to manage

I'm employed through DP, and social services help get it all in place. All my boss has to do is put in the hours once a month, then they email and tell her how much to pay me. They sort out tax and insurance etc.

The only downside to it is that you have to sort your own cover if the carer is off for any reason

[Ceasre]

Thanks again for all responses. When I looked at the direct payments website earlier it talks about being an employer and having to organise tax, wage slips and all sorts. I just don't have the time.

I think she probably could get attendance allowance, but the form is daunting and we "didn't" need the money as her pension is enough to pay her rent, all bills, shopping bill and getting ad hoc things she may need, someone in to cut grass etc. I also figured that for all the work I would do to get it we would not see any of it because I am assuming that SS would re-assess her financially and take it all. DLA is for pe

JsOtherHalf, I have never heard of a continuing care assessment unless it is what she has already in place which is carers morning and evening 7 days per week? I believe DLA is not available to people collecting state pension.

otstwizzard It is just so hard my DM is also very frail. She doesn't expect me to do things but she just does not realise that by her not accepting help from the carers it just causes me guilt and feeling that I should go more often.

I don't feel that a move to a warden controlled flat would be any help, not that there are any free ones around here at any rate. I think that any move it this rate would be detrimental to her mental health much as I would love her to me nearer to me. I think when it gets to the stage when the dementia is no longer manageable it will be a care home and I will have to face the fact that will be sooner rather than later, but I want her to be in her home for as long as she can because that is what she wants.

About 5 years ago we spoke about her trying to transfer to near me. We filled in all the forms, submitted them etc and then she changed her mind when her stupid (although very good) neighbours started filling her head with horror stories of people who had moved from her estate to the home counties and were dead within 6 months blah blah blah so it completely put her if. If only I had pushed her that little bit harder.

[MorphineDreams]

Really sorry you're not getting what you and your family needs.

My friend is a home carer and says she feels awful because she feels she can't get what she needs done because there's too many people on her round. She's often hours late home. Not saying this is the case here.

[JsOtherHalf]

Attendance allowance info: www.ageuk.org.uk/money-matters/claiming-benefits/attendance-allowance-/what-is-attendance-allowance/

www.carersuk.org/help-and-advice/financial-support/help-with-benefits/attendance-allowance

This guide is for children claiming DLA with a neurological condition, but it is very helpful in considering the issues your mother faces:

www.cerebra.org.uk/sitecollectiondocuments/books/dla_guide.pdf

Is it the local authority social services paying for the carer? If it is, then she is still eligible for a continuing care assessment. Don't underestimate how useful additional benefits could be in paying for additional help.

[43percentburnt]

Direct payments is what my relative uses, it apparently really easy. Maybe post a new message on MN asking for help and advice on accessing, setting up and managing direct payments. My relative is really happy with the service. The hassle you have setting it up will probably save you hours of worry in the long term.

Good luck xx

[deakymom]

care companies won't allow carers and clients to build up a relationship because it affects the carer if the client passes away or goes to a home etc i agree with hire your own social services will pay some money towards it but you may have to top it up my husbands nan tops hers up because she has a personal private carer

[deakymom]

see if the doctor will prescribe some build up drinks for her if she has issues with eating my nan had those they really helped her when she was having difficulty eating x

[MorphineDreams]

Ensure drinks are available on prescription and really do a world of good

[CleverCircusFlea]

Deakymom, quite the opposite, good care agency will know how important a trusting relationship between carer and service user is!

Op, continuing care is funded by the NHS, rather than social services, and is a bit more difficult to get in my experience, but worth a try, as continuing care clients will normally get a better package of care. I hope your mum gets her wish to stay at home, care homes are horrible places, definitely to be avoided!