Carers at home - how do they work?

[Countrydiary]

I’m sure this is such a stupid question but my Mum is really not well (degenerative condition) and my Dad is her main carer. I was mid way through trying to organise them some carers to come in and help in the mornings get Mum up etc. However they both then had a massive wobble about it, although have at least now talked them round enough that they’ve said I can pursue it.

They can’t seem to see how it would work/claim it would be a waste of money. I got a little way in organising it and then they just go ‘well that wouldn’t work etc’. My Dad is not the most straightforward person to deal with at the best of times.

My mum is pretty much wheelchair bound and also can’t see for a lot of the time. She can be left for an hour or so but it’s tough on my Dad. I’m fifteen minutes up the road luckily but have a six year old and a part time job and also am the main contact for care of my Aunt who is in a care home about an hour away, along with my Dad. I’m an only child so no other support. I think they desperately need both the practical day to day help and also just some form of backup if myself or my Dad were ill.

Would love some examples of how at home care has worked for people, practical things they’ve done, especially if people are in couple. I think they think my Dad can just do stuff because he’s there but honestly worried for all our sanities if it carries on as it is.

Sorry this is an epic post!

I'm in Wales and I don't know how much things vary around the UK but this is my experience.

Mum lived in a granny annex in our garden. She had very limited mobility - had to use a zimmer frame or wheelchair to get from the bedroom/bathroom to the sitting room, unable to dress/undress, prepare meals/drinks.

After much back and forth between me and the surgery mum eventually had a visit from a social worker at the beginning of November 2019. We heard nothing from them again even though I chased it up every couple of weeks until the beginning of March 2020 when a young girl turned up on the doorstep as I was getting mum up and introduced herself as coming from the care agency! Mum had been assessed as needing two calls a day - morning and evening - and I was already providing the rest of her care.

Someone came for 45 mins in the morning to help her dress, get her into her armchair and give her breakfast. A different carer came in the evening to help her to bed. The times were variable! Mum had said she would rather get up late and go to bed late and it was often 11 o'clock before the carer came to get her up and they came around 9 o'clock in the evening. Once mum was settled in her arm chair with her breakfast the carers would potter round and do whatever they saw needed doing in the time they had left - make the bed, wipe over the kitchen, put the vacuum round. The kitchen was pretty much unused - I would cook in my own kitchen and bring her meals to her and put the crockery and cutlery into the dishwasher so it wasn't like it needed a major clean. My daughter would clean for her every week as well so there was no need for regular housework from the carers.

We had to complete a financial assessment and mum had to pay £100 a week. She would ask every day who would be coming for the rest of the week and we would fill it in on her calendar as she was uncomfortable with a stranger walking in. We had a key safe by the door and the number was shared with the care company.

I really appreciated the carers coming - it meant that I didn't have to go in and out to mum in the morning - it had got to the stage where I could go in to see her and if she was ready I would do her breakfast in bed, go home and go back when she called me to say she was ready to get up. It meant I didn't have to stay with her until she was ready to go to bed - she liked to stay up until 11 pm and then would want me to help her into bed so it was often 11.30/11.45 before I could leave her.

I wasn't aware/was in denial that mum was in the early stages of dementia (a whole other story) and she was very unreasonable about the need for carers. She wanted me to pay them because they were coming to help me, not her. They were coming because I was too lazy to give her a little bit of help. Mum liked the majority of the carers, a couple she wasn't keen on, for no good reason. But again I think that was to do with the dementia.

For me, as her carer, they were a lifeline and enabled me to have a couple of hours in my own home that I wouldn't have had without them.

As the dementia progressed I realised aware that we needed more help and I was getting to the point where I was going to ask for her to be assessed again then she had a fall, ended up in hospital and went from there to a home.

I really appreciated the carers, as your dad might, and mum tolerated them because I refused to back down.

Carers can also be a companionship/ 'babysitting' service to give your dad more of a break. So, if the carer came round for a few hours in the afternoon, they could either stay with your mum so that your dad could go out for a proper break, or alternatively take your mum out on an outing somewhere so that your dad can have some 'free time' at home.

If this will be funded by them I would give 2 or 3 local companies a call, meet them in the home and chat about what they can do
Care is usually split into 3 components, companionship, home help and personal care/meds
Biggest issue at the moment is shortage of staff meaning lack of capacity to help
Care companies are well used to people who 'are not sure' and the good ones will work with this
Good luck

Ask them what they would like help with. My mum could do with some help getting washed and dressed but is resistant. What she did say she would like is someone to make her breakfast and a cup of tea in the mornings and help her make her bed. So that’s what we got the carers in for.

If they happen to arrive when she’s in the middle of washing and dressing, they can subtly assist, plus they change the bed if she’s had an accident in the night, without her even registering that’s what they’re doing, plus they do all sorts of other little things without making a big deal out of it.

Get them in for whatever your parents will agree they need, then let things evolve.

You can't pay for Carer to come for a few hours! My mum had to pay £25 for half an hour three years ago!

My mum is having NHS carers following an operation. The one who came tonight stayed about five minutes and said she had been to nearly 40 homes today.

You can pay a carer to come for as long as you want and for as long as the carer agrees.

I find £25 for half an hour hard to believe to be honest. Private carers usually start from £18 an hour.

Find this hard to believe too. A carer can't drive to 40 different calls in one day and provide care when she gets there.

You can believe what you like! She is entitled to about four weeks of four visits a day. That's on the NHS. She lives in an area with a lot of elderly people and one of the carers has said she goes to a few people within walking distance of our house here. The carer came tonight, took her to the toilet, changed her into a nightclothes and put her onto her bed. I don't think that took more than five minutes.

Two or three years ago she broke a bone and we had to pay for carers. It was £50 a day, half an hour in the morning and half an hour at night. She is in the Midlands.

I know over the bank holiday period one of the carers said that she had done a double shift because someone hadn't turned up to work. Maybe that has happened to this one today.

There are agency carers who do multiple calls a day. We have one hour a day and it costs £22 for a normal day, a few pounds more for weekends and bank holidays.

I also pay £15 an hour to a self-employed carer who comes for 2 hours twice a week to provide companionship.

Having carers in was a huge help to me when my OH was ill. I used them sometimes to come and sit with him so I could still go out and sing with my choirs. This kept me sane over several years.

We progressed from that to carers coming in twice a day - but you could bet your life he would need his bowels open just after they left - I could not lift or transfer him, so that was very difficult.

In the end we had live-in care which cost an arm and a leg, but there was no choice - I could not manage him. He then went to a nursing home, where he died.

Care at home is a mixed blessing: carers vary in their care skills and in their behaviour and approach; they are in and out like a puff of wind; they change all the time and you have to repeatedly go through what needs doing and where everything is; some are kind and caring, but do not have sufficient time allocated to do a good job etc.

I agree @Mischance carers do vary hugely in their skills but it is generally accepted that this is what you will get if you use an agency.

For those fortunate enough to be able to employ private, self employed carers, the outcome is much better, for both parties.

@OnTheBrinkOfChange You can pay for whatever you can afford. The private agency we use have a minimum visit time of two hours once a week. Once you get over about four hours a day, it's cheaper to switch to live-in. The OP doesn't give any indication of financial situation, but the implication is that they might be in a position to pay for care in terms of hours at a time rather than a brief 'wash and breakfast' visit.

DMIL has dementia following a stroke, her "friend " now pops in morning and evening to check mum takes her meds and heating up a homemade meal from me, does her day to day shopping and takes her to the hairdresser and library. Mum seems to be very happy with the situation and has settled really well into a new routine after coming home from hospital

My answer could be very long, sorry.
My grandma had social care funded carers 4 times a day. Same 3 people in rotation for years. She usually made a point of being up and dressed before they came in so they would make her breakfast, wash up her dishes. Came in and made her lunch, made her dinner then helped her to bed. They just did whatever needed doing. Sometimes they came in and shed already made her own lunch so they just checked she was ok, had a chat for a few minutes and left. They had an app in their phone where they recorded that they'd been in and a few comments so that gave us peace of mind too. She was so lucky to have the same people who got to know her and were flexible and helpful. But her needs were not too great. As she got more frail they did help her to get dressed, have a shower, brush her hair. She got quite confused too and they would sit with her for a while until she felt better.

She's now in a care home, we miss those carers, they had hearts of gold.

Mil was immobile at home and needed 2 carers to hoist her to the toilet. She was in a different council area. Visits again funded, but different people all the time, coming in and out at random times, didn't always have time to take her to the toilet, rarely saw the same staff twice. It wasn't their fault, their list of visits for the day was horrendous. Their time was entirely taken up with getting her to and from the toilet, they didn't have time to do much else. And sometimes they didn't even have time for that.

When mil died we organised a live in carer for fil. Paid for by him but with a contribution from social care. His physical needs were not great, he just needed someone around to make him a cup of tea, make his meals and just general companionship and support. That wasn't cheap but we were lucky to have regular carers for a couple of years who did 3 week shifts at a time. He was so much happier there than in a care home.

So we've experienced every type of cars really. I'd rate live in care best if you can afford it and have the space in your home. It was cheaper for us than care home fees but obviously once your cash runs out you need to sell your house to pay your fees.

Then daily carers if you can get reliable ones and your person is safe at home by themselves, not in danger of falling over or wandering off. I hated thinking that my grandma was alone overnight in her house, she seemed so vulnerable, tucked up in her bed by herself. So in that respect I'm glad she's in a care home. But again the staff are so stretched. She was wearing someone else's glasses last time I went in and her hearing aid wasn't switched on.

It's all just a bit shit really, getting old.

My ex husband has carers due to being in a wheelchair with MS. His care plan is 2 × carers for 45 minutes in a morning to get him up, showered, breakfast & meds, 1 × carer at lunch for 15 minutes for lunch & meds, 1 × carer at tea for 15 minutes for tea & meds,
2 × carers at bedtime for 30 minutes to get him undressed, in bed & give him meds. In reality his breakfast call can be at 10.00am when he is supposed to be first call at 6.30am, he is supposed to be showered at least every other day due to having a suprapubic catheter & leaking urine in the normal way but is lucky to get one shower a week, his lunchtime call will then be at 11.45 but he can't have his meds because he only had his morning ones at 10.30, his tea call will be at 3.30 & they will turn up to put him to bed anything from 5.30. The double handed calls one carer is supposed to do his personal care while the other will prepare his meal, tidy up & do things like change his bed, more often than not the carer who is on cleaning duty sits playing on their phone. His care log has gone digital so nobody can look at it, if there is an emergency there is nothing written down in his bungalow saying what meds he has had & when. Ds spends half his life complaining to the Care manager & the CQC about the state of the carers, his dad rarely gets hot meals, just sandwiches, they have given him his nighttime meds in the morning which has meant he has had to go without his night muscle relaxants & painkillers for 36 hours leaving him in agony.

I can’t comment on the rest of your issues, but the carer on the phone will be logging the care notes on the app, which you should be able to get access to. It’s a more confidential system than leaving written notes lying about the house for anyone to read.

You could just try first by getting carers in twice a day to get your Mum washed and dressed in the morning and then in evening come in and put her to bed. My relative has dementia and a lung condition and she has just started having carers in twice a day. It is a great help to her husband, this only started last week, the first 2 days were fine, but then they came at 10.30 am, so she had already got up and sometimes they come around 6 pm to put her to bed, so all they do is wash her, put nights clothes on and then it’s down to her husband to put her in bed. This was arranged after she had a spell in hospital through NHS for one month free, after that they would have to pay themselves.

Live-in care is very very expensive - I sold my home to pay for this and subsequently nursing home for my OH.

And it is not the dream solution portrayed in the ads. There is a shortage of carers and frankly you get virtually no choice in who you get. When one carer is due to leave for her week off, you have to choose someone else pdq or you are high and dry. Some of the people that were offered to us were hopeless.

By the way, paying from your own pocket for care (day or live-in) makes no difference to the quality - all the carers, both paid for privately and by SS - come from the same agencies.

My parents had a private carer for many years, and it worked brilliantly as she was free to do whatever needed doing, was the same person all the time, and really built a relationship with them and me.
To begin with, she more sort of supported mum (who had dementia) in doing things herself - so she'd help her get the washing on, peg it out together, make breakfast, make the bed, help dad do a shopping list (so they didn't have 48 tins of beans and 10 packets of butter), help mum wash her hair properly and so on. Gentle reminders about doing stuff, and dad could go to the shops and not worry. As time went on, she did more personal care, esp so mum could have a bath using the lift, but it was co-operative. She also suggested a cleaner, so they came in one day for a few hours and this lady was happy for mum to 'help', and found someone to take mum out one morning a week when dad could no longer push her wheelchair himself.
When one of them had an acute medical issue and they needed full on carers, I used an agency which was fine in terms of getting them up, fed, clean etc, but they deliberately wouldn't send the same people all the time and it was very much that they came to do what they had on the list and if mum was dressed they wouldn't check she was wearing something clean for instance.
Without their wonderful carer, dad wouldn't have got his wish for them to stay at home together to the end. It had taken a crisis for them to accept her in the first place though

My parents have private carers. It as difficult to set up as they didn't like the idea and kept finding excuses and reasons for not hiring them but I'm glad we went ahead because it is now working very well.

In my experience, working out what was needed and how best to organise it in terms of times was key. It was clear that my dad needed help getting up, washed, dressed, and his bedroom needed cleaning every day (incontinence issues). So we have a carer that comes six days a week for an hour at 10 am (my dad chose the time) and does all the above.

Then my mum wanted help with house cleaning and company for my dad for a few hours weekly so that she can go out and have some time to herself. So we got a carer/cleaner that comes 3 times a week. One day she comes at 10 to the getting up routine and stays for 2 more hours. The other two days she comes for 2 hours. My mum organises herself to go out during this time and comes back to a clean house and my dad is happy to be left at home because he's had company.

It helped a lot that I was there when the carers started. I deliberately stayed with my parents to help on the first couple of days, explain the carers how things work in the house, how they like things done, where things are kept. This helped a lot because I noticed that my mum was nervous about the first day. She just didn't know what to say or how to set things up. So I did most of that and then left them to a routine that was already organised to their liking.

The next step will be arrange help at night-time. Let's see how that goes...

The private route does work well for some but you have to have a plan B for dealing with sickness (usually at short notice) and holidays.

If you can get an assessment you can apply to get funds direct so you can employ your own carers.

Funded care: ours did meds, personal care, heat up microwaved meal.
Self-funded, for say 2-3 hours- you can get them to shop, take to medical appointments etc ad hoc.
But after a few hours a day live- in is cheaper- 700-1500 p.w. Then they will cook, lightly clean and accompany anywhere, but also sit and watch tv. Best if they have a space of their own.