Care of elderly relatives

[Nocreativeusername]

Hi, I’m new to mumsnet, so forgive me if I get anything wrong! I’m in the process of setting up a home care company for the elderly. It’s something I’m hugely passionate about. I’ve looked after my granny, who suffered from dementia, at home, and worked in nursing homes / hospitals. I think that provision at present is largely inadequate, and I hope to do things better. I’d really like your help mumsnetters... if anyone has experience of looking after elderly friends / relatives, I’d love your insight- what would help the most? What is important to you / your relative? In return, I’d like this thread to provide support / advice to anyone who needs it. Thank you in advance xxx

hi - as people said to you yesterday, the caring for elderly parents thread should be very useful.

Things I specifically found difficult in no particular order:

• knowing who to contact for what, the bureaucracy, eg you can only have the district nurse if the gp says so, despite the hospital saying distruct nurse was required

• advice on navigating the minefield that opens up when you start having to have financial assessments/capacity assessments. If a home had said 'we will help you through this' we'd have bitten their hand off

• care homes that dont tell you stuff! one private one was not helpful at all, no handbook, hard to find staff, when you did find them they were not approachable. We took mum out for a picnic lunch in the gardens and they got really stroppy because they'd cooked her a microwave meal which I'd bought in and didnt know where we were. No communication whatsoever. The second, also private, couldnt have been more different - nothing was too much trouble, everyone smiled, staff at every turn and I really got the feeling they CARED. silly little things - they told us to pack as if mum was coming for a week's holiday and then we could work out what else she needed; they had a little shopcase where you could buy toiletries rather than having to go out again to the shops. Was a really good place.

• having carers at home: good up to a point, we used a local-ish but quite large agency. we could say that X wasnt the right person for mum and that was fine. but when she got more difficult and we needed an overnight carer they sent a woman who was allergic to cats so the poor woman was sneezing all over the place. they also didnt provide her with gloves etc so mum had a terrible bout of diarrhoea it was difficult. she only lasted one night because mum went into hospital again the next day - but after that this particular agency wouldnt touch her again.

hth I'm sure I'll think of more!

Yolo, thank you so so much for taking the time to reply in so much detail. I did read through some of the other thread and it seems like you’ve really been up against it for the last few years, so to go to the trouble of writing this for me on top of that, I’m really grateful. I’d like to say that I think you’re a saint for what you’ve done- my gran’s just died but we’ve been caring for her between us for about 5 years, and for the last two she has been completely dependent for all her needs. And so I understand how difficult it is, and this is largely the reason I’m doing this (my company will be named after my grandparents).
Your suggestions above are really helpful, and it’s exactly the kind of detail I was hoping for when I posted.
I saw also on the other thread the news about your husband- I’d like to send strength and love to both of you. Thanks again xx

I looked after 3 elderly parents for 10 years. I found all the carers kind and dedidicated. The problem was that Government spending cuts meant that never had enough time to do their job properly.

A lot of older people, even those with money, resent having to pay for quality care. It is not possible to provide good care on the cheap and that is the Catch 22 that you will find yourself in.

Every old person has unique needs and it takes time to understand the best way to support them. With Dementia suffers those need are constantly changing. What satisfies one day won’t be acceptable the next..

If I was starting up a Care business, I would begin by talking to,the relatives. This is never done, but working closely with relatives, I believe, would give a better outcome for the person receiving support.,

I wish you luck, the Care Industry is growing rapidly and good hearted people like yourself are desperately needed.

seriously, I am absolutely not a saint!

re florentina comment about state carers - totally agree. In our area we have the intermediate care team who are totally amazing, but I think you get 15 days. after that your rellie is back to eg 3 x visits of 15 mins per day.

I think it would be helpful if care homes came onto people's agendas much much earlier, and I dont know how you would do this. DM was always adamant she'd never go into one - but actually, if she'd gone a couple of years before crisis point she would have been much happier and probably much safer and therefore less of a burden to all the family (hope you know what I mean by that). However, I suppose that's only an option for people with money... eg if you dont have the money the state is not going to put you into a care home until you're desperate, and that is probably why something like 80% (I think I read today) of residents die within 12 months, basically because they've been broken before.

thinking about different care homes... the local one that mum was in was not particularly smart - nice, clean, no smell of wee, activities, lovely staff etc. But you could tell they cared, her last fall there I sat with one of the staff for 2 hours while we waited for the ambo. You could not have wished for nicer, more caring people. No more than 25 residents? About £900 a week.

the posh one in the town up the road - looked amazing, promised all sorts, DM thought it would be marvellous. Maybe about 200 residents. Not cold or callous people, but just not enough staff, not enough apparent love. £1500 a week.

the one DB wanted to move DM to before she died: specialist dementia unit, on site spa/massage blah blah blah. VERY expensive. I was reluctant, I thought the move would distress/kill her, and she couldnt access any of those expensive services at that stage. £2000 a week.

Florentina, thanks for joining in- this is honestly all so helpful to me. I agree with what you say about involving the families.

I hope to avoid the fifteen minute visit nightmare, as I honestly don’t believe you can do a god enough job in that time (not on its own in any case). Initially I won’t be able to do direct referrals from Local Authority, partly because I don’t think their budget will allow for us to do a good enough job, and partly because they pay at least a month in arrears, so as a start up that will be horrid for my cash flow!

Yolo, I completely agree that people are seeking out solutions to late in the day. I’m hoping to market my company as a kind of social care provider / lifestyle business hybrid. It won’t all come at once, but I’d like to encompass services such as exercise groups tailored to older adults, possible community projects that clients can become involved with (I think it’s really important that people can still feel that they have a purpose), a qualified herbal practitioner, art classes, reading groups etc etc. I hope that this way, I can both encourage people to take action earlier, and also not feel so resentful about spending their own money on it. I too feel that it’s crap that people have to find this themselves a lot of the time (maybe one day I’ll be the Jamie Oliver of elderly care services and campaign for policy change- but baby steps 🤣) .

I agree with you too yolo, the home with the spa sounds lovely in theory, but your mum sounds similar in a way to my gran- she would have benefitted in NO WAY from those facilities, and I’m sure you’re right in thinking she would not have coped with the move- also £2000 a week is eye-wateringly expensive!xx

'Care' no matter who it's for has become a profit making business and for me that it a double edged sword.

I've had to work with various agencies and care providers over the last few years with varied outcomes. Some so-so and some excellent.
I'm currently having to deal with DM and her needs, she is self-funding which is incredibly frustrating because Adult Services say we have to put care in place but give no support or guidance. Also as she is self-funding all the agencies charge more than they do funded clients. one or two companies have been honest and admitted that self-funding clients subsidies funded clients. It's right the DM pays but very very wrong that she pays over the odds.

We currently use a brilliant care at home company who really go the extra mile with a very tricky client. I'm utterly dreading the next stage.

I wish you all the best in your venture.

windgate totally agree about any lack of guidance/support for self-funders - as if we are all supposed to know what we are looking for, what we need to look for. All the websites promise absolutely everything, and they probably do deliver but only up to a certain point. Once a crisis hits, you are back to dealing with NHS/SS and it is really confusing.

One thing I would say to anyone who has a relative going through this is to keep notes. I put my notes together from msgs to my bestie plus posts on the elderly parents thread, and it has been very useful.

Anyone in the caring business: talk to the person first, involve the family, communicate with the family, expect that the family wants/needs to know what is happening, and sometimes/often the elderly person cant communicate that or is confused by/doesnt understand what is on offer, which makes communicating with the family even more important. Dont ignore what the family says: if a particular drug doesnt suit, listen to what is being said; if a patient doesnt like xyz then listen. sorry, off on a rant there!

Thank you Windgate for taking the time to comment. I hope that you can continue in relative stability with your DM for as long as possible. I’m glad that you’ve found a good solution that works well, at least for the moment! Is there anything specific that this company do that makes them stand apart from the rest? Also, regarding funding, I didn’t know until I started my research that the cost was higher for those that fund their own care - I think it’s awful! The system is so messed up. There’s an Age U.K. report from 2017 that says those paying privately can expect to pay on average 47% more for the same bed in the same care home as a local authority would pay! (Think that figure’s right- it was about that certainly). And on top of that they don’t get the advice either! The system is completely messed up!

Yolo ... rant away!! From what I’ve seen of your posts on the other thread things were incredibly difficult for you and your DM and I have no doubt there’s still a lot of lingering frustration- and I promise I will put all ranting to good use by channelling it into positives for my business.
Xxx

oh another thing, linked to my point about communication - remember that the family actually KNOW the person, and that the relationship with professional carers is brand new. So keeping the family in the loop can smooth out issues more easily - eg when mum was getting confused no one would believe me that this wasnt normal behaviour for her. it was like there was an expectation that she was old and therefore confusion par for the course.

I second what Yolo is saying So often the relatives are just dismissed. My step-father was a difficult and obstinate man. He refused Doctors advice for his foot and ended having his leg amputated from above the knee.

He was inhospital,for 5 months much longer than needed . He refused to,have his bed moved downstairs as there was a stairlift. The OT said that was unsafe, hence the stand off. He had expectations of having crutches and being able to,care for Himself. At a meeting with His SW I was told I should stop telling him all the things he would not be able to do. Let him go home and see how he gets on. It was a total disaster when he went home. He had no upper strength for crutches and relied on neighbours, me and two 15 minute visits.

He could have gone into specially adapted flat, where he could have managed and had company. Instead he was humiliated by having not just a bed downstairs but also a commode. The whole thing made him totally unbearable.

The only people he was pleasant to,,were the carers who had the patience of saints.

Sorry for late reply, mum is back in hospital.
The care company are excellent at communication, empathy and not being judgemental. The manager will ring or text me with updates both positive and negatives she will also text with little things like getting low on loo rolls, milk etc which is really helpful as I do the shopping.

Currently hospital want to discharge a now non-mobile person to home either today or Friday. Care manager is being a tremendous source of support in managing the hospitals expectations. Just having a professional on our side is amazing.

Oh Windgate, so sorry to hear your mum’s in hospital, I hope this doesn’t disrupt things too much for you all. Thanks so much for the detailed reply, it’s really helpful! I’m really glad you’ve got someone like that in your corner! Good luck with everything 😘😘

Hi OP. I've read this thread and then reread your original post and I'm not sure what exactly you are proposing that your company does. Are you setting up as a carer yourself or an agency that will provide carers or an advice service to relatives looking for solutions. I think all three are potential businesses but the business plan will be different in each case. What all three will have in common though I suspect is that it will be very hard for you to make much money as care is so much more expensive than anyone realises at the start. So, for example, you may not like 15 minute visits and want to spend longer getting to know your clients and building relationships with them, that might be unaffordable and actually a 15 minute visit to keep them safe and alive is all that is actually needed. I suspect everyone would say they would prefer longer more personal visits - but will they pay the extra on top of what is already an eye watering expense.

You will know what your local market is likely to support - but you need to be realistic. An awful lot of people resent every penny that care costs them (even if they won't admit it) - they can see a lifetime's savings/an expected inheritance disappearing before their eyes. And this can be painful.

I wish you luck though - very few people seem to be serving this market through choice and you deserve success for being one of them.

Mrs, thanks for taking the time to comment. You’re absolutely right about care costs, and I can understand people’s resentment. In my local area there is really very limited provision at all- we’re quite rural and sparsely populated- when we tried to get care for my gran, nobody would come to us.
I hope to provide care services to people and, based on advice from other commenters on here, hopefully an advisory service. There are other things I hope to provide too, but as you pointed out, they will all require separate business planning / analysis, so will have to come later.
It’s definitely a difficult market to go into, but I feel strongly that we can do better, and I’d like to try- I want to help people, and have a meaningful, challenging career as well (I was going to train as a doctor, but three years’ working in an NHS hospital has fully put me off 😭).
Basically I’m going to take it one step at a time, and hopefully continue to learn (formal education as well as experience based learning) as I go, to enable me to solve the problem that we have. I guess I like a challenge 😂

Hi again OP. I think there is a market for what you say above, and in fact there might be an earlier stage - so not care per se, but companionship, light household stuff, etc.

We had this for DM for about 3 months before catastrophe struck and it was great - she was still independent enough to get up and dressed, but not enjoying cooking, and felt very alone. So we had a series of nice ladies who would come in for an hour every morning - meaning we knew she was alive, safe, had lunch made etc - and then I would do an evening visit to be sociable rather than run round like a blue-arsed fly.

Cant remember what we paid, but it wasnt a fortune, we had them 4 days a week, cleaner (friend) came on the 5th, and I just did evening visits at the w/e. Not sure they were even trained carers, so it could be a job for older people in your area - basically they just needed common sense, and an ability to get on with people.