Carers Dilemma

[IthinkIsawahairbrushbackthere]

Mum has been having two care visits a day since March and my life has improved no end. She however resents them bitterly. She claims she doesn't need them. She is capable of caring for herself. She resents the money it costs (100 pound a week).

I am not so happy with the company although the individual carers seem nice enough.

They are supposed to come between 9 and 10 a.m. to get mum up and give her her breakfast but lately they have been arriving between 11 and noon.

Mum has started getting herself dressed in the mornings - pulling on a skirt and top and underwear. However when I go out and see her her skirt will be inside out and her jumper is on backwards. This has happened most days this week with a variety of carers.

So in the 45 minutes allocated to mum she is wheeled into the living room and helped into her chair, given a cup of tea and some biscuits (current breakfast of choice) and her tablets.

Occasionally one of them will wash up (I don't expect them to do that btw but sometimes I have left crockery to soak overnight and have found it washed up in the morning). I'm not expecting them to do the housework but mum needs more help. She is losing her sight and would be really upset to know that she has been wearing her skirt inside out etc. She could do with someone washing her hair. Is that reasonable?

We never know which carer will be coming and mum gets very stressed not knowing who will be letting themselves into her home while she is in bed in the mornings. We do ask and they tell us what they can but often the rota is changed.

In the evenings we expect the carer around 9 ish but it can be any time between 8 and 10 p.m.

Mum is insisting she doesn't need help but twice this week she has fallen - once she was unable to take the step from the door way to the bedroom and collapsed face down on the bed and it took me half an hour to get her up. Yesterday she nearly fell out of her wheelchair - she pulled herself to the edge of the chair and had no strength to stand up so I had to call my husband who fortunately was still at home. Otherwise she would have slipped to the floor and I wouldn't have been able to lift her.

But the biggest issue I am having is Christmas. She doesn't want the carers coming in "because she can take herself to bed, they don't do anything to help her, and she would like to be able to stay in bed later without having to get up for the carers!"

I have said that we will cancel the evening carers on Christmas day/Boxing day and I will put her to bed but she is still complaining about the mornings but I feel sick at the thought of having to make three visits over the course of a couple of hours and still finding her undressed and struggling, expecting me to do stuff she would never ask the carers to do (help her change her underwear etc).

Am I being unkind? She lives in our garden but each visit takes half an hour or so - check if she is ready for breakfast, return when she is ready for breakfast, go back and help her dress - that is really the whole of my morning gone.

She can present as being very bright and capable but she can't work her tv, struggles to use the landline phone, can't see something that is on the floor beside her. Should I talk to the care company and ask their advice? Should I cancel them for a couple of mornings to make her happy? What do I do!!!!

As you are about, would it be worth looking into getting someone privately or a PA through a company like People Plus? That way you and your mum could interview yourselves, and get someone she likes.
It does mean if your PA is off sick you'd have to step in, though if you employ 2 there would be some flexibility.

Well for starters the care company need to come at the time they're supposed to in the morning.
It's a common problem unfortunately, that people don't want care. Of course they don't. But they NEED it. You may need to step in to make sure your mum's getting the help she needs. But the minute you pick up the slack in the nitty gritty of caring, everyone else will back off. I would start by speaking to the company who provide the care.

Are social services involved? If your mum needs the help you've stated in your post, they should be.

I've worked for a care agency, and unfortunately if they are short staffed (which happens every time they get a new contract) people get the carers when they are available. Or someone goes off sick, suddenly remaining staff have to squeeze in clients. Most offices now expect staff to phone from the client's phone at beginning and end of the call to prove they've done the required time (quite rightly) but it means other clients' calls get later and later. It's nightmare - everyone is miserable, there's a high turnover of carers and office staff because they take the flack when it all goes wrong. The only winner is the company owner. The clients lose out most of all. It's really sad.

She’s funding herself?

Call the agency about the morning timing. If it doesn’t improve put in a formal complaint. Arriving so late she’s got herself up is beginning to pose a risk to her.

The agency should be providing you with a rota before the start of each week. Ask for it.

If she is self funding and the agency are rubbish then start looking for an alternative agency.

Has she had a falls assessment? If not speak to her GP and say she has started to fall, or that her mobility is decreasing and she has fallen. This should trigger a falls assessment. If she falls again and cant get up call an ambulance if you have to, don’t mess up your back trying to lift her. (Caveat: dont do this on a busy cold evening as it may take some time for them to get round to her if she hasn’t hurt herself).

And as PP says, do NOT start doing the carer’s work other than a bit on Xmas day. She might not want them but both you and she need them.

I wondered how you were getting on. As others say, carers should come when arranged- and mums carers shower her and wash her hair, plus sort food and wash up.
Can you look at other agencies? Home instead are a franchise chain with a good reputation. Speaking to your local ss may help- pointing you in helpful directions or your local gp surgery may have local knowledge. Local carers association may have info too.
Your dm may not like it but her needs are increasing and you should not be expected to do it. And you deserve time for you at Christmas too.

If we had to pay it would cost more than a hundred pounds a week though wouldn't it? (I have a new lap top and can't find the sterling key!)

I have to keep reminding myself that mum is not as capable as she appears. She can not walk more than a couple of steps from the doorway/bed to the bathroom yet she tells me she can take herself to bed.

@IthinkIsawahairbrushbackthere

If we had to pay it would cost more than a hundred pounds a week though wouldn't it? (I have a new lap top and can't find the sterling key!)

I have to keep reminding myself that mum is not as capable as she appears. She can not walk more than a couple of steps from the doorway/bed to the bathroom yet she tells me she can take herself to bed.

My mum was having one visit two hours a day self funded and it cost about £250 a week

Does your dm have attendance allowance? Non means tested and would cover some if the costs- 70 ish a week?

My mum has a call button for if she falls. No-one can get her up so 2 people come from a company with various bits of equipment and they get her up. Their beeper was going off constantly when they were last there. They just zip around all day long getting elderly people off the floor. I think this was arranged by SS, there may be a small monthly fee.

Mum has Attendance Allowance. TBH I think it goes on the cost of extra heating. She is always cold.

Mum has a fall alarm that sounds in our house. I had to press it yesterday when she was hanging off the edge of her wheelchair to summon DH to come and help me.

I would consider looking for a pa you pay directly. It might not be the total solution and an agency can be used as back up but we had a lady who came after dropping her kids at school (around 9am) for 90 mins who did both personal care and housework, she then came back about 2pm for half an hour to check up and give lunch and meds, then again 9pm for changing into nightwear etc (including cleaning up from accidents) and meds. Worked out cheaper than the agency wanted for fewer hours

I agree about private arrangement (pa). Adult social services put us in touch with a service who hosted private carers

PA can also me personal assistant (even though they mean carer) That's what I meant in my post above.

*mean

The trouble with care is that everybody wants to get up between 9 and 10 ... In theory they could employ extra carers for peak hours but in the long run it would lead to the split shifts that were so common when I was young and which were rightly stamped out - working for 4 hours in the morning then a gap of a few hours when you can't really unwind, then more work in the evening. So maybe the only solution is the one the japanese are working towards - robots for personal care.

If she is trying to get herself dressed (and she will feel quite good that she is "able" to do this, can the morning carer's instructions be changed to "check clothing and help with putting it right"? I can see she might not take kindly to this, but maybe her pride in her appearance will help her to overcome this.

If she's starting to have unexplained falls and is moving to what an ex-SW friend referred to as the "biscuit diet" I suspect living at home won't be viable for that much longer.

You probably know this but may be useful for someone - if she falls, get her on to her front, and see if she can get herself to kneeling or all fours. Place chair in front of her and hold it firm while you get her to place her arms on it and kneel upright. Then stand ready with another chair behind her and get her to get one foot flat on the floor and us it and her arms to push herself to almost standing, so that she can sit on the chair you have behind her.

If you can't get her up, don't try to help her up - if she collapses on you, not only do you risk back injury, but you'll drop her. Ambulance may take a long time to come, as in hours.

When we had carers for my dad, the carers themselves told us to call the agency when we were unhappy, and to keep calling them every time. Otherwise they think everything is fine. Carers don't come at stated time? No complaint, must be ok, that becomes the new time to come in at etc. Coming between 11 & noon is unacceptable for a morning visit!
There should be some kind of service level agreement between your mum and the agency on what the carers are expected to do and when.
If council are paying for some of the care then you should also be able to complain to them. Also, I think the council can calculate a reasonable amount to give to you so you can employ someone yourself instead? You would need to take care of payroll, NI etc, but our council said they could help with this.