Arranging Live In Carers

[Forestridge]

After a very difficult couple of weeks where Mum was climbing stepladders, had a TIA, had a fall and didn't call for help for over 6 hours plus concerns about dehydration and sessions of not taking Meds, it became clear things couldn't go on as they are. DH and I were at breaking point, our health suffering, DC's suffering, sure you all know the picture.

Mum went to respite and lasted 2 days (it was there manager expressed concerns re dehydration). We found a self contained flat within a CH which would have given Mum a decent amount of independence but with all the support needed. She doesn't want to go however and has asked we arrange Live In Care. She doesn't have a good track record with Carers and there have been complaints about her plus she hates people in her home but is apparently so desperate to avoid a CH that she is prepared to do this.

My Brother had kindly taken over and is going to start ringing round tomorrow to see what he can sort. It's hard for him as he lives overseas and hasn't seen her for 4 years so I thought I'd ask the collective wisdom of TP for some pointers to help him ask the right questions of the Agencies. It needs to work so the only input I need to have is take her to the Memory Clinic etc and out for coffee, he will be the first point of contact from now on. Her legs need washing, creaming and surgical stickings put on daily as she has cellulitis. She lives in a 2 bed bungalow if that is relevant. Any advice gratefully received, thanks.

 

[janma221]

Not much advice to give but bumping your thread up to the top and hope you get some answers. I know my Mum hates the carers coming in and is terribly rude to them. When I have been there I just cringe. Hers are currently provided by the frailty team at the local hospital after a couple of episodes where she was wandering and in danger. I don't live that near about 2 hours drive away. It is worrying wherever you are and I am sure you will get all the support you need on this forum.
Take care
Jan xxx

 

[rajahh]

The thing about live in carers is that they have to have some guaranteed time off each day.

Also from experience of others having this service, the carers change after a few weeks so each time there is a new face for your Mum to get used to. new ways of doing things, etc.

I do not think you will be totally free of responsibility, there are bound to be hiccups, and possibly tantrums. If your brother is still going to be abroad then I feel the onus will fall straight on to you to sort out any immediate problems.

Hopefully there will be others who respond who have more up to date information and can help you

Jeannette

 

[Fed Up]

I've never of that around here so assume its self funding as it must a huge amount of money. You surely must find out about employment legislation NI, Tax, Pension etc gosh hard. I was asked to go down the organise the care yourself by our LA, I read about it and thought NO WAY it looked extremely hard work and I said no but that was just for three visits a day not full time care. Minimum wage, who takes mum to the dr and do they own the car is it then commercial insurance so many things to think about. I'm sorry but I can't help and I hope someone else can.

 

[Witzend]

I've never of that around here so assume its self funding as it must a huge amount of money. You surely must find out about employment legislation NI, Tax, Pension etc gosh hard. I was asked to go down the organise the care yourself by our LA, I read about it and thought NO WAY it looked extremely hard work and I said no but that was just for three visits a day not full time care. Minimum wage, who takes mum to the dr and do they own the car is it then commercial insurance so many things to think about. I'm sorry but I can't help and I hope someone else can.

If it's done through an agency they will surely be responsible for tax, NI, etc. though of course it will cost more than employing someone directly.

I would have thought that anyone doing this sort of work on a regular basis (i.e. a sort of freelance taking on assignments that are not strictly long-term - the sort of people who used to advertise in The Lady) would sort out their own tax and NI, much like someone who is self-employed.

 

[LizzieT]

Hi,
After 3 years of muddling through, I organised live in carers for my dad and whilst the carers were great, it did not give me the reduction in stress I hoped it would. I had 2 carers through an agency, one for 3 days per week and another for 4 days. They both agreed to cover the others holiday periods, but I still needed to provide breaks each day, either through day care or friends taking over for periods.

However, I still had to organise all if this, plus all his finances, house upkeep, and the daily dozens of phone calls demanding that I got 'this woman' out of my fathers house.

In the end it broke down as one of the carers had family problems of her own, leaving me to cover as the temporary carers found him too difficult and after covering for a month myself, I finally broke down. Sorry should mention the 4 hour round trip, job and children.

Didn't mean to rant sorry, and I am sure others have found it works, but looking from 8 weeks after my father went into a nursing home, I am not sure I would do it again

If you can think how you would manage if the boiler was condemned at 4.30pm on Friday in february when your mother has a chest infection and it is your daughters birthday then I would go ahead, but in the end I just couldn't.

Probably not what you were hoping for, but I needed to be honest.

With very best wishes

Lizzie

 

[Forestridge]

I will admit to knowing nothing about how this works at all as I've trudged round 9 homes as assumed that is what would happen. I'd rather assumed my Brother would sort it with the Agency and it would happen with the Agency dealing with the tax etc and it could happen without input from me.

My health (and DH's) really has gone through the floor over the last three years as it was a big battle to get as far as diagnosis which only happened finally in March. My family are in bits, both the DCs are tearful and we need stability for them now. We have no one who can help with the children and DH and I haven't had a weekend on our own for 15 years. My FIL is 87 in failing health abroad and DH has to ring him daily on top of everything else.

I absolutely can't have any phone calls and problems to deal with, I can't cope with it any longer - I am the one she lashes out at verbally and am not able to deal with this any longer. If a problem occurred and I got a call and wasn't available to deal with it, what would happen then if Brother abroad ?

 

[Witzend]

I absolutely can't have any phone calls and problems to deal with, I can't cope with it any longer - I am the one she lashes out at verbally and am not able to deal with this any longer. If a problem occurred and I got a call and wasn't available to deal with it, what would happen then if Brother abroad ?

I know you said your mother is desperate to avoid a CH, but if she's really that difficult with carers, is this honestly going to work? I can't think many people actually want to go into a care home, but the fact is, things often do get to a stage where family simply can't cope any more, or at least not without colossal stress and very likely consequent damage to their own health.

Other people's lives are important, too, and sometimes, sadly, for everybody's sake, it's just not possible any more to put a sufferer's wishes first. My mother certainly did not want to go into a care home, but eventually, after we'd all tried our best for so long, it was the only viable option.

I might add that we did look at 24/7 live-in care (and had done so previously for an aunt of OH's) but both times it turned out prohibitively expensive, quite a lot more than a care home, and TBH since my mother was not the easiest person in the world I could never really have seen her getting on with carers anyway.

 

[garnuft]

I would make sure your brother and the Agency looking after your Mum
know that you don't want to be contacted.

Your Mum seems to need quite a lot of input, your brother will have to find carers who will be able look after her and as he lives so far away, judging her real care could be difficult.

 

[longacre]

Oh my goodness. I hope you havent dived off the edge having read these very truthful responses...we did live in carers for seven months for my mother. It was incredibly hard and stressful. My mother is very tricky indeed. The point about carers needing time off is well made. We had to organise pop in carers to cover the 2 hours time off period each day. You need to check what arrangements you need to make for this. The carers changed frequently and there was almost always a drama at the change over, which I dreaded. Who will be around to cover that if there are issues? You?

Does your mother sleep well at night as one issue was that ours was up and wandering, so waking the carers who were then often too tired to do do the job during the day, not surprisingly. So changed even more frequently. You need to be clear with them how your mother is in terms of her day to day needs, interactions with other people etc. to try and get the right match. This may be quite difficult for your brother to describe if he hasnt seen her for four years?

Finding someone who has the same interests as your mother makes a big difference if this is possible as they may be able to connect with her differently. If you use an agency, they will have all the necessary insurances etc in place but if you want the carers to take your mother out, in their car for example, you need to check their individual insurance covers this. (not sure if any of this bit is relevant).

I am afraid our experience of the live in agency provider was that we felt we were in a money-making sausage machine and it was very hit and miss as to whether the carer relationship worked. The agency for the pop in carers was fantastic, they employed the carers, so they were better paid, and it was a very family feel.

My mother has been in a care home now for almost three years. I wish you enormous luck if you pursue this route.

 

[Forestridge]

Thank you all for your honest answers - I haven't dived off the deep end ! There's obviously a lot for my Brother to consider when making the arrangements so it will be very useful to have this input to help him when ringing around.

I don't think any of us have the first clue what she's like at night as no one's around to see. The stepladder crisis happened one evening, the TIA at bed time and her fall at 3am, all over the last few weeks. But what actually happens and whether she sleeps is anyone's guess.

Apparently Mum is so worried about going into a CH she's prepared to tolerate people in her home which is quite a turn around for her as she frequently complains how she can't stand people in the house, her cleaner was amazed to hear that's what she was asking for . I haven't really had a discussion with her as my Brother has kindly said he'll take over the daily phone calls. All I've discussed with her is trip to Memory Clinic at end of week where the Consultant is reviewing her Medication situation. I'm happy to take her to that as have built a good relationship with them there, they are very supportive to me and I am very grateful. They fully understand the impact on children and as an aside said there was discussion at a conference recently about support for children through the school for those affected by a family member with Dementia.

She was due to go into the flat at CH today so that is actually paid for a month. So if it goes pear shaped within that time she'll be able to go in as has had her assessment and promised them she would try a month.

 

[nicoise]

A friend of mine employed live-in carers for her mother for 2 years which actually kept her there right up until her mercifully brief final decline.

This was done via an agency (national) who handled all the aspects of employment, CRB etc etc. The carers changed about every 6 months (although 1 was changed for incompatability) and the arrangement worked very well.

The mum was pretty compliant, and had no mobility issues, so staying in her own home was fairly straightforward.

However, there was the matter of time off, and a complete Sunday day-time, which had to be covered either by further paid help, or family members.

As an arrangement handled by someone overseas, I'm not sure that would have been totally satisfactory, and would have incurred a fair bit of further spending I suspect to cover the occasions of time-off for the full time carer, and unexpected times such as illness (before a replacement carer could be sourced).

But my friend was very happy with the arrangement, and it worked well for her mother.

 

[Forestridge]

Thank you all very much for the input, much appreciated. I've passed a link to this to my Brother so he can have a read before ringing round the Agencies. I think a lot of potential problems have been highlighted so he'll be able to ask the right questions and work out what kind of back up will be necessary to make this a success.

 

[Forestridge]

Update. Went to Memory clinic today and saw the Psychiatrist who has started her back on Galamtamine and found she does not have capacity to make decisions regarding her accommodation .

I feel in light of this that she also does not understand the implications of a live in Carer. She's struggled to accept Carers for her legs and has been rude (though to be fair not this week). The Care Agency are concerned about her taking her Medication. A couple of month's ago she asked me to look into sheltered housing as I think she could see she wouldn't be able to stay but I think that rational element of her has gone now. Her 2 nights in respite frightened her and she now equates leaving home with that as can't make the mental leap to it being different.

She is bladder incontinent and spends a lot of time in the toilet. There's only one toilet and she would need to share with the Carer. I've spoken to the Agency and it works on a two week basis , the idea being over time a bank of about four or five stay and become familiar. But I am concerned at a total stranger, albeit CRB checked, living with a vulnerable adult. I know she's feisty but I feel it has the potential for all kinds soft abuse and to me is a safeguarding issue .

The flat I have found is admittedly a bit bleak at the moment but will look very different with her own things around her. Although not a Nursing home the Management team are 3 RGN's who are committed to end of life care wherever possible (though I accept if severe behavioural issues then she would need an EMI placement ) Mum could start in the flat and when unable to stay there move onto the main house.but at least at that point the place and staff will be familiar and I really trust the Managers there. She'll always kick off at people but they're the type of people she will respond to best. she'll retain her independence and live on her own for as long as possible. Any falls she have staff will be able to deal with whereas paramedics will be called by live in Carers, making a hospital admission more likely.The Care Hme also check footwear ad eyesight after a fall. The flat will be risk assessed and only safe items will be allowed in whereas at home there's a myriad of dangers to someone who doesn't realise thir limitation, even with a Carer there .

My Brother says lets try the Live in Carers which he is insisting on unless a case can be presented to him that it will do more harm than good. I think actually as we weren't able to sort the Health and Welfare POA in time it is now actually out of outer hands and in the hands of the SW who will need to do a formal assessment and then a Best Interests decision, am I correct in that ?

I think what I'm after is more thoughts on what other people would do in our situation please ?

 

[Jessbow]

She needs to be where someone can keep an eye, I would be putting it to my brother that a live in will get on her nerves, 24/7. I'd be pushing for the supported living ( very supported) where if Jenny (for instance) goes to do her stocking and mums got a strop on, Jane will go in 20 mins.

Try the month, you never know what will happen. it might suit if you say that the other way is someone there 24/7 in her home ( which will actually be a huge upheaval, clearing a room for a carer, own TV etc)

 

[Witzend]

I can't comment on the SW input issue, since because of having welfare P of A we never had to deal with them.

However, if it's left up to the family and your brother is still insisting on care at home, then I guess all you can do is give in - and try not to say 'Told you so' if and when it's no longer working. At least you will know you've tried what your mother wants, even if she's no longer capable of making a reasoned decision.

However I think I would point out to him (if this is the case) that the sheltered flat you mention may not be available if you later decide you need it in a hurry (i.e. if and when things go wrong or there's some sort of crisis) and your mother would then probably need to move straight into the care home.

As for the q. of potential abuse from live-in carers, if they came from a reputable agency then for myself I don't think I'd be as worried about that as about refusal to cooperate with them - I know my own mother would probably have been v stroppy, not to mention probably refusing to let such people in, since she never could have remembered that they were coming, or were necessary at all. We had enough trouble with the poor person coming to make sure she took her Aricept. 'Who are you? No, you're not coming in!' (you can imagine...)

All best wishes with it all - it's such a hard and worrying time anyway, let alone when family can't agree on what's best.

 

[rajahh]

Having a live in carer also entails giving them time off. some live in carers only do " days" so you might have to arrange someone else for nights.

It really is a big upheaval as jessbow says.

 

[Moonflower]

I don't have experience of this myself, but my friend did manage to keep her aunt at home for a period of time with live in carers. BUT there were massive problems, she lived a long way from her aunt so had no way of checking up regularly on what was happening, whether carers had turned up as expected etc. Personally I wouldn't contemplate this unless I lived close enough to easily monitor exactly what was happening.

One of the carers left her chewing gum stuck to the bed headboard each night. Yuck.

 

[Forestridge]

Thank you for all your thoughts. I think I do need to stop worrying about the whole safeguarding thing.

The Carers from the Agency he has found do nights but have 2 hours off during the day. One issue is we aren't talking about a house with two floors but a 2 bed bungalow with one toilet. There is a conservatory on the back the Carer could use for privacy but it suffers from the whole too hot/cold thing.

Listening to Mum talking to the Doctor whilst he was assessing her capacity it's clear she doesn't understand the implications of her choice. A few months ago she asked me to look at flats asI think at that time she had the insight about how this was going. Now that part of her brain that used to be weigh up things rationally has been damaged. In fact it's her ability to understand how things will affect her and her change in personality which cause more problems than the memory loss. My last phone call with her went pear shaped as she doesn't understand the importance of taking Galanramine at roughly the same time each day with food, which was impressed on her by the Memory Clinic.

We'll see what the SW says next week once she's got the Capacity assessment through. She will need to formally assess Mum I think. I'm seeing a friend later who is a community mental health worker but a younger age group and try to get to the bottom of what happens now when she hasn't got capacity, no POA (had started but not got signed) and family unable to agree. My Brother has said if a case can be presented t show trying the Home Carers will do more harm than good then he will back the flat which is paid to until end of the month.

She had a formal assessment for the flat recently as she had agreed she'd go in so the SW can speak to them for further info if she wants plus lady at the Care Home she was in for respite (the whole two days she was there !) is happy to speak to her as well as she was very worried about us all, felt we would have an 'uphill' struggle with her, was concerned she is dehydrated and witnessed she isn't taking tablets when given. The flat is paid for till end of the month as she said she would go in, so in a way that takes the pressure off.

I was prepared to try the Live in option till I heard she doesn't have capacity and I feel she doesn't understand what this means in terms of her daily life. She's been difficult with her Carers at home a d a couple have complained. Also one if the reasons she hated the respite as there were always people in her room. In the flat she would get far more privacy but be supervised by an experienced team. She'd also get a chance to socialise though I doubt she will. My friend's Nan was in respite the same time. She is admittedly older than Mum but they both love gardening and Wimbledon . Mum refused to say anything other than hello as apparently she's not her type.

I seem to be writing essays at the moment, apologies.

 

[Bellabella]

Live in Carer

I am a self employed qualified live in carer. I spent several years in the military and without a doubt-stress levels are about the same.

I believe it is about getting the right match-even so especially with this awful disease, the stress both mental and physical is the same for everybody.

I believe there is a gut feeling wether there is a match or not-although depending on the stage of the disease it can sometimes be difficult to tell.

I have been in my current position for over a year. I take each day as it comes. Some days can be very tricky, although not being a relative is an advantage in the fact that I never take anything personally.

I live in and paid 4 hrs in the morning-I work a different part time job in the afternoons as her husband is here for the lady also.This gives everybody respite without breaking the bank. As long as my privacy is respected I am happy. My wage is decent and I refuse to work for an agency as I believe it is a rip off for the person paying and the employee.

I do my own tax return and national insurance. I thought it might be helpful to have a view from the other side.