What are the little things no one tells you about?

[Sunnylilypad]

Hi all,
I’ve been watching my mum take care of her own parents over the last couple of years (85,87), and it pains me to see how much invisible work is involved. She’s juggling health appointments, bills, let alone all the emotional work on top of her own problems.
As I have aspirations of starting up my own social enterprise in the next few years, I’m exploring whether there are better ways to support people going through this. Not selling anything, just trying to learn from real experiences.

If you’ve looked after a parent or relative, I’d love to ask:

• Are there things you find yourself doing again and again?
• Have you come up with any little workarounds or tricks that help even slightly?
• Was there a moment where you hit a wall and thought “I have no idea what to do next”?

If you’re happy to share, I’d really appreciate it — either here or by DM. Thanks so much x

I'm not sure I understand your questions

But I'm interested to know how you are looking at this. What would the idea behind the enterprise be? Are you thinking of something that helps carers generally?

It’s just not clear what you’re asking or why.

We need to know what things do you have in mind that need doing repeatedly?

I'm also confused.

Many people do struggle, but that's where community social care usually comes in ? Not sure there aren't already initiatives in this area that are designed to help aged people and their carers. Where's your gap in the market you're proposing?

@SquishedMallow I think there's a gap in the market

But I tend to assume it's because if you formalise these services, they are expensive to provide. So I'm wondering how social enterprise can fill that gap.

I suppose if it was charging less and covering services that are not covered in any other way, that would be something useful. But I can't see how OP questions relate.

I care for my Dad.

I'm afraid when they get to the stage they need a great deal.of care its extremely individual and each day you take what you are given and things are not predictable. It's really not as simple as answers to a few questions.

This is why care companies and care homes exist.

Why don't you join a care company and experience it for yourself?

Today I've had
Refusal to get up - wanted a lie in.
Checked on him regularly
Helped Dad with all catheter care and leg bag replacement, personal care and getting dressed when he did want to get up
Got him breakfast and medication
Filled his water bottle
He didn't want to go for a walk - so we didn't
Catheter care
Put in a load of washing inc Dad's stuff
Put away clothes from.yesterdays wash
set out next weeks medication envelopes
Got him lunch and a drink, and cleaned up after
Took a call from catheter supplies company as they are out of stock of an item
Called district nurses to confirm an appointment and took their returned call. Added it to the diary.
Received a text reminder of a blood test appointment
Put TV on for Wimbledon and a drink
Catheter care
Got dinner and wheelchaired Dad to the garden as we ate outside. Cut his food up.
Cleaned him up after eating
Settled him in his room to watch his own TV and put channel on he wanted
Checked on him regularly
Helped him dress for and go to bed with nighttime catheter care, bed side put up and dentures cleaned and his water bottle filled
Woke up and to him when he called out suddenly that he'd shit himself. New bedding. Help to get clean.
Back to bed routine.

And all with him being unable to communicate due to dementia.

So, a lot of that I will do again tomorrow, but it's individual to Dad. Many things I won't do - it'll be something else!

Honestly, it's impossible to answer except its difficult and draining and unless you actually do it you'll never fully understand.

Gosh she’s just trying to think of ways to good in the world. I’m aware people replying are likely having a hard time caring for loved ones but doesn’t feel like there’s need for annoyance. She’s obviously seen her mum has struggles in particular areas and wonders whether, if she polled a wider range of people, those problems would regularly flag up. If so, she’d look to find a solution. Or perhaps she already has a solution but is trying to verify if there’s enough demand for the solution by asking here.

The questions won't achieve that though- they aren't directed?

I don't only care for someone, I have a lot of friends that do and we talk. It's the same as I've explained. It varies. Every day.

If the OP has an idea, great, share it and we can comment if it would help us, in particular.

Currently the system exists (carer help, care homes, day centres, NHS and district nurses) but generally fails from lack of people available to be employed in the industry and high cost.

Someone came on here last week plugging living with an elderly person needing care and so getting cheap rent. A very small handful of elderly only need social contact support. The majority need some form of care, which is likely to increase, and that is where this model falls down. And what if they die or go into care - this care lodger suddenly loses their home?

It would be helpful to understand what is being proposed so useful comments can be made.

Maybe because it’s a bit vague and we’re all run ragged? The suggestion to work for a care agency for a while is valid and constructive. Having ‘seen’ your mum do it is not the same, not by any stretch.

She’s juggling health appointments, bills, let alone all the emotional work on top of her own problems.

What kind of thing do you have in mind for your social enterprise, because a random person can’t talk to the GP, access bank accounts etc without permissions- and not a lot of us give out those sorts of accesses for good reason.

Are you proposing some sort of companionship/ counselling model? Wouldn’t work for us, it would just be yet another person wanting to take our time, but some might be interested.

I think it’s good the op is looking for ideas. Yes it might not be viable, but what’s wrong with touting for ideas?

I think some people have been a bit rude in their replies.

Yes it’s hard caring and I admire people who do so much. I don’t think I could. But not everyone has people at all, or people who are willing to help as much. So there is nothing wrong with the OP trying to think of an enterprise that she can set up to help those people, and create an opportunity for herself at the same time. She’s only looking for ideas at this point.

Perhaps a service accompanying people to appointments op? Or taking them shopping?

Or just sitting with people, or taking them to clubs and such. Just generally giving them an opportunity to get out of the house with paid reliable care that doesn’t change every time.
Just relieving the reliance on family to provide these things. And creating some extra independence and fun.

There’s a paid for service in my DPs area that offers a kind of housekeeping service. So they will check the fridge for out of date foods, make meals, run the person if they want to do errands in person on top of cleaning . Because they don’t offer any personal care, prices are not too high.

Of course you have to get the elderly person to accept that they need this, rather than their menopausal only DC driving 1.5 hrs up and down as frequently as they can with a full time job <sigh>.Also I think finding the right person to do the role is tricky. I finally got them to accept a cleaner, but she isn’t a chatty person- fair enough- so they haven’t really warmed to her, so my plan to gradually extend her hours to do more housekeeping duties hasn’t gone anywhere.

The nature of care is that it is repetitive. But exactly what needs repeating varies enormously from person to person. And changes over time.

The suggestion to work for a care company might be useful for understanding a segment of what needs doing. But that part of the task is already covered by care companies, so doesn't need a social enterprise - it just needs more care staff. Taking over from her mother for a few months would give a better idea of the unfilled gaps in the system.

Where a social enterprise might be able to help is with all the stuff a care company doesn't do But so much of that isn't already covered by a service because it can't be. It's the finance and health admin that involves confidential info and can't be handed over to random volunteers. It's the immediate help that involves a dozen phone calls a day about 'where is...?' or 'how do I ...?' that can only be answered by someone who knows all the details of the person, ther house, their medical condition, their regular difficulties etc.

What needs doing is fixing the health service so it has joined up systems and departments talk to each other. More medics, more nurses, more care staff, more hospital admin and transport, better IT systems. None of this is within the scope of a social enterprise.

@rookiemere makes a very good point. Mostly it falls on family because the older person refuses outside help.

This kind of thing gets asked on here every now and again, always by people who mean well but have no actual experience (and don’t want to get any in care because ugh) and defended by, again, those with no actual experience.

I live in a terribly nice village and there are local companies springing up that offer driving and companionship- a very middle class version of what social services might otherwise provide, but when you factor in running costs- particularly insurance- on top of at least nmw then they rapidly become expensive. A 2hr round trip to Tesco is almost £50 for instance. Having someone to talk to is £20/hr.

Help with IT and tech problems, is also a very real need.

Actually, slight revision to the above - hospital and medical appointment transport could be an area to explore. But there are already volunteer driver services. So again this is something that exists, there just need to be more peole doing it.

DF died recently but I cared for him for a long time, and later we got in a full time carer for personal care and when he couldn’t be left alone.

Things that annoyed me and we didn’t find out until too late on the whole for him were

-the social prescriber at the GP was so good, both for him and me.
-when he needed more than just me or a cleaner, we could have used a PA or girl Friday. To assist with everything and anything except personal care, before he needed full time care. Again, we found a great multi talented housekeeper who went above and beyond, but when she moved away, we struggled. He had someone cooking basic lunch, someone else gardening, another cleaning & changing beds, someone else (usually me) doing appointments, prescriptions, admin, trips to bank etc. he didn’t need ‘care’ at that point, just help and transport. We found a couple of people before the crisis and hospital stay that precipitated the live in care, but it was a bit too late again.
-regular (some weekly) blood tests could be moved to local surgery or home visits, after years of having to do an hour’s round trip to hospital.
-local community volunteer driver scheme was great before he got too ill, or when I wasn’t available, as hospital transport can be booked but is very slow and makes a ‘quick’ visit take all day.
-local dementia cafes and lunches are a lifeline, but you need to be on the waiting list before you need it. He waited until he was too ill to enjoy it, or be able to stay.
-local care homes numbers, also you should check these out before you need them, and get on the witting lists of nice ones you like
-clear and declutter before you get old & have a place for everything.
-start using hearing aids with mild hearing loss, it’s very hard to adjust to aids once severe loss or dementia.
-continuing health care can and will get paid once Drs say death is imminent (maybe 6 months to live, IIRC?) but no one tells you. We eventually got another live in carer paid for, in arrears.

The gaps that need filling are where services fail to talk to each other, or coordinate services.

A housekeeping type service would be helpful but I’m not sure it would be practical to hand over all appointments that need making (and keeping!), admin, shopping, companionship. TBH this is all handled by residential care (apart from paying the bills).

With MIL, the sheer number of "things to do" was our issue.
She had carers in 4x a day for personal care and food/drink preparation so her immediate welfare needs were met. She is in a nursing home now, so only the admin stuff applies..

But... she needed to arrange appointments for and get to - hospital, doctor, nurse, podiatrist, physiotherapist, dentist, hairdresser, optician... she needed to buy food etc. ... she needed help for the housework and garden... she needed sooooo much admin help with pension/pension credit/attendance allowance/blue badge renewal. Banking, we had to set up direct debits, she used to keep money in envelopes and pay bills at the post office or council offices every month.

So, we could have done with getting a PA to organise, a home help to deal with the house and a gardener/odd job person to take care of outside and silly little jobs inside (she pulled a curtain rail down etc).

But there was no money for all that, and MIL wouldn't have strangers deal with her stuff, so other than personal care - that all fell to us, to do all of those jobs pretty badly (to be honest) as we were dealing with our own lives (an hour away) too.

Journalist?

The problem with appointments is they vary on time and regularity. What if appointments are delayed and you.are supposed to now be at your next diary call for someone else? Most care works on a regular call system so they are as efficient as possible on cost.

Shopping and social visits for a natter already exist (although finding one isn't easy as recruitment is difficult) and things like the Filo project or day care centres offer whole days out.

It still comes down to cost. It's not cheap to be paid per hour, on costs and covering expenses. Everything you do with a frail person takes double the time. Many elderly don't have the money or they choose to not spend what they have and that's a big hurdle to accessing help too. You shouldn't underestimate the awkwardness of many elderly!

If you are a journalist I DO NOT give permission for my comments to be used!!

Yes I would echo that even if the old person can afford it, they often resist because a) they feel they don’t need it and b) the cost does seem high even when they on paper have the funds for it.

In my own position, I have the situation where my work contract is about to end. I simply can’t manage to work full time and do the 2-3 hr round trip to DPs so I am looking for part time roles. Unfortunately majority of these are near minimum wage.

It would be much more cost effective for us as a family for DPs to get personal care and allow me to work full time, but for the reasons above they won’t countenance it, also because of wanting to leave an inheritance- which ironically is stopping me making a decent living now.
They are too old to have a conversation about this and have forgotten how tiring it is to work.
Hoping i strike lucky and can negotiate reduced hours in something decent, but it was to highlight that it’s not just the service being available that is the blocker.

Indeed.

And the minute you leave, they forget and the problems return!

Not saying its not a wanted service but it's not as simple with the frail and elderly as just explaining and leaving...