Please help me organise home care

[FiveFoxes]

My has Alzheimer's and has finally agreed that she needs some extra help, which is a great start.

I contacted the local council to try and arrange a care assessment and I am waiting for them to contact me.

Mum is over the limit in savings so will be paying for her own care.

I am currently filling in the form to apply for Attendance Allowance. I have POAs for finance and health.

Mum is fit and healthy, so no mobility problems, but she needs help with the process of bathing, dressing, cleaning and basic other things (ie making sure milk in fridge is in date). She doesn't need help with things like getting out of bed as she gets up with the dawn (or earlier) and is very active!

I have made a shortlist of local carers, both big and small companies. I have looked at recommendations, CQC ratings etc.

How often do I need to organise them to come? Can I start with a couple of times a week and increase it?

How long do visits last, bearing in mind we are paying? Is it as long as they need to help her get changed? Or is it a full hour (for example) and they'd help her get changed, and then generally help and chat to her for the hour? What does a typical visit look like?

I know these are questions for the care agencies, but I'd quite like to approach them with a general idea about what Mum needs, what visits she and I want, what to expect and what to ask for.

Thank you so much!

(I have googled, but I can't find anything online about what a care visit is actually like! ie Care Agency X visits Mrs Y between 10 and 11 on Wednesday mornings and helps her have a bath and hair wash. Then after she is dressed, they make her a cup of tea (checking the fridge at the same time), feed the birds and sit down for any remaining time for a chat)

If you are paying then it is up to you to say how long the visits should be and how frequent. DMs carers were mainly paid for by Social Services and they spent 45 minutes showering and dressing her and giving her breakfast. Does she need carers or a cleaner? Or both? Carers don’t do the cleaning.

A good private company will be very used to first-time care users. They will come and do an assessment of their own and discuss with you what you and your relative want and what they recommend.

Your guess about what happens is pretty much spot on. Most private companies round here mainly offer one-hour visits that will do a bit of personal care, a bit of household management and a bit of socialisation.

FIL started with one visit a week mostly for showering and a change of clothes, which he would only do for them, and for a chat and cup of tea which he loved. MIL managed all the household stuff, and he hated going out but loved the fuss from his carers and so did MIL. This built up to one visit a day over the course of a year or so.

I am not sure how many visits she needs or for how long, that's the problem. The care agencies I have looked at say stuff about light cleaning and companionship, as well as care, so maybe the difference is that we're paying? I have no experience of carers at all.

Can I say one hour twice a week so she can get used to carers? One day for a bath and the other day for general stuff. Then move up to an hour once a day when she gets used to it? (And then add more visits as necessary).

I think that sounds very sensible. My mum started with fewer visits and built up when necessary. After a few years she was having 3 caring visits a day - a longer one in the morning for washing, dressing and breakfast then a quick lunchtime “safe and well” call and an evening visit for getting to bed.
once she had got to know some of the carers it became much more social and she started paying extra for her favourite carers to do two short afternoons - one for bed changing/ cupboard sorting etc and one for ironing but mainly for chat.
she know everything about their families and always swapped times for around any school commitments they had, and they left to do the school run. There seemed to be more tea drinking and TV watching and she taught one young mum to bake over time BUT she loved the social contact and it worked well for her.
If you start small you can see what works well for you and your mum.

With Alzheimers might it be better to have daily so there is a routine?

My DM has daily for 45mins but 1hr twice a week for showers.

You could do 30 or 45 mins daily with priority being dressed and teeth and then other tasks as time permits? Note 30mins is not half the cost of 1hr, so longer visits are better value.

My dad was self funding but used carers supplied through the Council. This was 5-6 years ago and he was paying £15 an hour (so a half hour visit was £7.50)
He had a 30min visit morning and night, to help him get up and washed and get to bed, but what actually happened depended on his mood at the time.

He started on 3 visits and dropped down to 2 as the third wasn’t doing anything (or it may have been 4 to 3). They all kept records of what they’d actually done.

He also had meals on wheels, who came in at lunchtime, settled him with his meal, and who would alert me if there were any problems.

Carers sourced by the LA don’t do shopping or proper cooking, so you’re better off going private for these things.

My dad also had a “foot health technician” who visited to do his toenails and dry skin.

Get Age UK to help you fill out the Attendance Allowance form. They were a huge help to me as they know which wording to use on the form.

IME agency carers do the bare minimum. They do turn up reliably but work through a check list as quickly as possible. In DM’s case that involved checking she was still alive and dispensing medication. They would ask if she was hungry or thirsty or wanted a shower but as she always said no they did not insist. Irrelevant how much time you pay for as if you book a 60 minute slot they use up extra time to get to their other clients. But good as belt and braces.

Some residential facilities offer day care options. My DM who was mobile, continent and sociable at the beginning of her dementia journey loved this and eventually moved in on a FT basis. But it depends on the individual and how the Alzheimers presents.

We also used a pair of ex agency workers as companionship. They worked together and would go in for a couple of hours a day in addition to the care package. They covered each other’s holidays. Ask around for personnel recommendations.

If loneliness is a problem, mobile hairdressers, neighbours, church groups and family can also supplement.

There was company called Driving Miss Daisy who would take DM out on drives/trips etc. £££ but very good.

We are paying circa £30 per hour. They use an app Birdie so we can see how long they visit for and visit notes.

We did this for MIL, she was self funding. For us it was important that mostly the same staff came, rather than 5 different ones each week.
We tried a cheap one terrible.
We went for 'helping hands' eventually and they were great. We met with her 2 main carers and told them exactly what we wanted/expected.
They did send a very young girl to take over as one of the main carers, we declined as she couldn't make an omelette and there were no mutual things to chat about either.
Good luck, if you get the right people they are worth their weight in gold.
I'd start with once a day, they could leave her a sandwich for lunch perhaps.

Thank you all for your advice. @Chrismaslights carers sound exactly what I would like! Whilst Mum has Alzheimer's, and is really bad in some ways, she is also almost fine in others. For example, until the weather got cold, she was out every day raking up fallen leaves, putting them in her garden waste bin, can remember it's collected fortnightly on a Monday.

She needs help with some things, but I would rather the help was the minimum she needed and she had company as well. I would like carers who help her do things rather than do them for her if possible.

Thank you again everyone, this is really helpful for me to get my head round what is wanted and needed before I contact the agencies.

I was thinking of a couple of visits a week at first whilst she gets used to carers and we make sure she likes them and they're good. Then we can progress from there to daily visits.

The care agency will do an assessment - they will talk you through the process. They want your business so it's in their interests to spend time talking you through options.

You don't need anyone else's say so to arrange care - but obviously a local authority care assessment is useful.

I wonder if your mum would be better off with a cleaner to supplement the carers. A good private cleaner will be willing to work with your mum and give her company. I don’t think there is much difference in the price and a change of face might be what she needs to help her independence.