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

@M777 what did the social prescriber do for you and your dad, please?

No one tells you how much time you will spend searching for the help you are entitled to. e.g. My DM was crippled with osteoarthritis and I bought a second hand wheelchair so we could go out and about. The more I learned about arthritis the more I realised that she was entitled to a wheelchair. So we asked the GP. He had no idea (in fairness, he was a trainee) so we asked the receptionists. They gave me the number of the district nurse. The district nurse couldn't do anything until DM was referred by the GP. So back to the GP who did the referral then a visit from the nurse to measure up and everything was sorted.

We were recommended to get a commode for DM - no one could tell me how we would go about getting it.

Getting a care package - no one explained to us how it worked. I asked for a Carer's assessment which I never had. Apparently a joint assessment was carried out when I had specifically requested that I had an assessment where I could speak freely away from DM.

None of the services spoke to each other so I would run round in circles. My greatest desire was for a joined up service and a one stop place where I could go to ask my questions. Or failing that, a directory that gave the numbers for each of the departments and details of what aids are medical (wheelchair) or social (toilet frame).

Our local carers association gave me a list.....of those I rang about 50 percent said they didn't know about it or it wasn't their department any more.

The systems are so close to broken (in my experience) that holding information together that came even close to working would be a full time job.

I'd like something like Tripit that you use for travel plans and can share but something for care needs.

A 1 place file that can be shared amongst family members that has all appointments uploaded, care invoices, just general stuff so I don't have to keep WhatsApp either to share or ask siblings all the time

Guilt. From the self and others

And will only get more difficult with the new ideas about digital services announced in the NHS 10 year plan yesterday

and also: and this is a really sensitive one: taking elderly to appointments that are a big upheaval and for medical issues that pale into insignificance next to their sheer frailness.

I don't know the solution, but long-term planning and regular check-ups on medical issues that aren't likely to have improved or worsened significantly by the time the person dies is madness and causes big upheaval

Reading back it looks like I'm negative but I'm.honestly not. I have 30 years of successful business experience (I sold in 2020). There are millions of good ideas out there but for them to have legs and work in reality takes so much more than a good idea.

I would never have believed how hard caring is until I found myself in the midst of it. And how difficult it is to create a plan. It's ever changing.

Our choice of support is for Dad to have a month full time in respite care, at least once a year, and we then give 24/7 care the rest of the time. One day, we.wont be able to cope and a care home will be his only option. I can quite understand where £1200 a week of costs go in a care home!

That's exactly what I thought.

Whichever poster asked about the social presciber is she basically helped arrange this…

all this kind of shit

that no one told you about

she came to my home for an hour to let me rant…I was on the verge of running away, and finally said the magic words to the GP - ‘carer breakdown’ and she came over within a few days. And listened. And told me what to do, arranged referrals, and did all the stuff that should have been done if only I’d known what to ask for. Sadly I didn’t even know about her until I cried to the GP on the phone and said I was contemplating just leaving. Everyone. My own family included.

Would Trello be any use here?

I would never have believed how hard caring is until I found myself in the midst of it.

Well, exactly.

And that's why, when someone starts a thread about the possibility of needing to care for an elderly parent, I always suggest that they don't, because it's so horribly difficult and will absolutely shorten your own life.

But that always goes down badly, and people tell me I'm heartless and cruel, and they'd never abandon their own parents if they needed care.

Which just shows that they haven't yet tried it.

We have a file with Dad's TEP, copy POA, last hospital discharge letter, latest medication review, and DN passports in. This stays with Dad.

We did it on recommendation of a paramedic and its come in handy when we've had to call an ambulance as the information is to hand and when he goes in for respite.

You know who has been talking about and finding creative solutions for this since the dawn of time......disabled people. Why not reach out to them, they're the experts after all. Plenty of advocacy groups would love to advise.

I've not heard of that but shall research. Thank you.

Good idea.

Has op came back? I think you're advising a journalist everyone.

Thanks so much all. No worries @Navigatinglife100 , it is at the very least your right to vent.
I really appreciate all the responses, and I want to be clear that I didn't mean to minimise the weight of caregiving, or how relentless and emotionally complex it can be. I completely agree that I cannot comprehend it unless I'm doing it myself, and that everyone’s situation is different (from my mum’s).
I didn’t want to “lead the witness” in my original post, but I have been exploring various ideas, and am open to your thoughts, even if it’s “this would never work for my situation”.
Current thinking is a caregiver hub or “concierge”-style support tool. There are some private platforms out there like KareHero, which tend to be sold to employers who can afford to give it as an employee benefits, but I’ve been wondering if there’s a way to build something simpler, more affordable, and accessible to families directly, eg by funding it with some advertising, and some small % people having a premium subscription.
Was thinking maybe you could encrypt, securely store and access key documents as part of a shared “care plan” a bit like @Titasaducksarse 's suggestion I think.. Other features I've considered include: checking eligibility and trying to simplify benefits applications; partnering with respite care options and even allowing shared funding (eg “split the cost” with siblings); pulling in data from as many sources as possible about events and day centres/dementia cafes etc, whatever is relevant to your preferences....

Very grateful to those who took/take the time to share

Teeth lost
Hearing aids lost
Drinks tipped down their clothes
Food smeared all over clothes , jewellery and furniture
Losing the television RC
Ditto their phone
Ditto their tablet
Ditto losing every charging lead for their tech items
Losing their compression stockings
Getting food in their hair
Ripping their papers and magazines
spilling their makeup bags
Dropping everything
Losing their glasses
Spilling their medications and losing their meds
This is a daily occurrance and my Mum lives in a care home. Yet all of these things are left for me to do every day when l visit .

I can see the point of your project OP, there’s clearly a huge unmet need in elder care. I’ve worked with social enterprises, and I’m sure there are some out there trying to do this. But I also think that one reason for the gap is that it’s so bloody difficult to meet these needs.

The degree and type of need is hugely variable from one person to the next, and each individual can have so many ailments / needs - as the posts above show.

DH and I live overseas, SIL is the main carer for FIL. We are racking our brains trying to work out how to lighten her load without actually being there and it’s very difficult. FIL only wants her (or DH) to do it - whatever ‘it’ is. He has carers three times a day, which is great, but they do the bare minimum and sometimes not even that if he’s refusing to shower. We can’t:

stop him phoning her 10 / 20 times a day because he’s worried about something, and forgotten what she’s told him

do his cleaning / laundry / ironing- he doesn’t want a cleaner, she’s not willing to force it.

take him to medical rdv, it’s a battle as he’s very reluctant and always wants her to cancel them. He’d never get in a taxi of his own volition.

keep him company. He’s widowed, lived in a tiny flat with neighbours but no local friends. Only family is SIL plus her DH and their son. Frail, early dementia and post stroke, he is no longer capable of making new friends in a ‘lunch club’ setting. And he’s basically house bound these days.

The only thing that would solve all this is putting him in residential care. But he can only afford a year, and at this stage he’s still quite far from a care home being the only option - there’s no way he’d get council funding atm.

Its incredibly complicated and expensive to replace all the work done by a loving, capable, albeit exhausted and fed up, daughter.

I wish we’d known, at the start of dementia with FiL, that no matter what we did, he wasn’t going to remember anything.

E.g. writing down the answers to the questions he was endlessly asking, in big, clear print on an A 4 sheet - and then laminating it, so that he had it alway to refer to.
Complete waste of time!

And that telling him the truth about something that was only going to seriously upset him and make him cry, (e.g. MiL having died 10 years previously) was pointless, when he was only going to forget and ask again where she was, 20 minutes later.

Oh, and I wish I’d known that so many people who are clueless about dementia, but think they understand it better than you do, will be very keen to give you advice!

Like, when my DM had some angry bee in her bonnet about something that was all in her head, and kept on and on and ON about it, I could cheerfully have brained people who said, why not distract her with a nice cup,of tea? Did they really think I was too clueless to have thought of anything so simple? 🤬

Why doesn’t the care home do these things for her? I would be moving her to somewhere that does.

The care home should be dealing with all of this though?

It would be useful to have more support when they’re in hospital and you’re at a distance. Or worse, have two of them in different hospitals at a distance from each other AND you!

You can do the meetings with HCPs via phone or Zoom but the practical stuff like getting their washing done assumes someone local is popping in very regularly. Impossible when you’re hours away and have a full time job and children!

I’ve been racking my brains for a tech solution to lost dentures and hearing aids (why not glasses too) in hospital. What there needs to be is some kind of trackable but non-toxic ink so that nurses (or relatives) can write on the aid or denture itself when the person is admitted. Confused elderly patients removing their aids that then get tangled in sheets; or just plain carelessness by the ward staff. I refuse to believe that this doesn’t exist tbh but no exciting young entrepreneur finds this subject at all interesting and they have no idea how devastating these losses are to peoples wellbeing and bank balances. The only current solution is to claim the cost back from the hospital, and this does sometimes happen, but it still means that new dentures and hearing aids have to be made, plus it’s a daft cost to the NHS.