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

No one tells you that caring for someone is essentially a thankless task that you don’t really get paid to do, it’s expected at the detriment of your own health.
applying for carers allowance only takes this money from the person you are caring for, as it’s a deduction to their money.
you then, because you claim carers allowance, are only allowed to earn a certain amount of money per month in any job. Go over that amount at any given time and it will be requested to be paid back.
you are basically expected to take on the role of parent for someone where you are responsible for every aspect of their life, like they did you when you were a child, only they’re an adult, whereas you were a child and had no bills to pay or a house to keep, it’s extra work.
the only way this will ever work is if the government recognise carers and do a proper check on the person requiring care, and the person giving it, paying them a proper wage to do the job. If the person was in a council funded care home it would cost thousands a month to provide this care. I don’t understand why we fail so much in this country to follow proper practice, and allow so many to fall through the cracks, and it’s not just in care. Too many people are ripping off the systems it’s now weighed down to drowning point in this country.

That’s appalling

The hardest thing with my DGM has been the stubborn refusal to do anything to help the situation and will only do it when there's a crisis and she is forced into it. Didn't want carers. Didn't want a stairlift, hand rails, or mobility aids. Doesn't want a care needs assessment. Now doesn't want a new bed (she needs one that can be adjusted) or an orthopedic chair. These things could mean she is safely able to get into and out of them by herself without help - thus increasing independence. But no - she doesn't want them, and won't really give you a reason other than I don't want that/don't like it. She doesn't have dementia, but trying to talk to her about any form of necessary change is like trying to reason with a grumpy toddler. Her attitude to it all has worsened her health and pain levels, resulted in one bad fall where she was lucky enough only to break her wrist, and resulted in increased burdens on the family, despite her saying she doesn't want to be a burden.

If there was some kind of service that could talk with elderly people about future proofing their homes and lives to help them retain independence and support them to look at options, without that having to come with any kind of sales chat or the stigma of anything mental health related, maybe that would be helpful. Almost like an ageing coach, maybe. And if it was done by older peers, even better. I think someone like my DGM would listen more to a peer than younger people, family or medical professionals.

Kind of off the point, so I apologise, but I would welcome some advice. I have an 88 year old mother who is declining fast. I live in the same area and have never got on with her. She’s unpleasant, manipulative and self serving. However she expects me to help her out and want to spend time with her. One sibling has fallen out with her and barely sees her. The other is a ten hour drive away.

I want to move away , basically hundreds of miles away and she is very stressed by this. Would you stay for the sake of familial duty?

No

Carers allowance is a joke.
Limits paid work and you're too knackered anyway.
For me, total lack of interest in my mums issues now shes 79.
Everything - even severe pain - is "well, its her age"
SO much admin...the drs/pharmacy mess up her meds every month
Hospital appointments or, even worse, hospitals refusing referrals (this has happened three times this year...two hospitals both saying the other should be the one to do an MRI...)
8 hour waits for an ambulance for a stroke...
No appointment after the stroke...a phone call - she can't remember what they tell her.
Dietician - no f2f appointment just phone calls.
She's 6 stone.
Banks etc - I'm her POA and banks, drs, hospitals all have copies of her LPOA but STILL phone her, not me.
It's utterly exhausting and the wait for the next crisis is awful

Oh, and I have health issues of my own and 2 dc and a dh that works away.
Its very, very difficult

Care in this country really needs reform. There should be more ways to pay for good quality care, including in the stages before a care home is required. And those providing these services and care should be properly recognised for the invaluable service they are providing.

I have no family myself sadly, so will face old age entirely alone. The thought terrifies me and depresses me to the core. However, even if I do just rot away on my own, I'm almost glad that I won't be placing any burden on an over stretched adult child.

Ideally I would like to pay for what I may need and for it to be delivered by professionals who are happy to be in that vocation, valued and well paid for it.

OP, as well as this one: read at least the first 10 threads on this board that have more than 15-20 posts. You will see the same things come up in different shades.

Transport and the many mismatches of (usually) medical and wellbeing interactions and communication methods from providers to the capacity of the elderly person and those who are in place to support them - those have been big issues, and the second of those also changes on the go, without warning.

The thing that has shocked me most like @CrazyGoatLady and her DGM is my DPs wilful intransigence.

Refusing a bed that would be better for DM, insisting the sitter comes only once a fortnight rather than weekly- suspect would have been shown the door if DH wasn’t there, the getting the bare minimum of cleaning when they are rolling in money. I don’t think it’s their fault - both are displaying forms of dementia- but it’s so upsetting when they could be more comfortable in nicer surroundings even in their own home.

And the other side of it - I still love them, they are my DPs, but I bitterly resent their inability to see things from any viewpoint other than their own and I will be relieved really if they have to go into a care home which will hopefully relieve the burden on me ( only DC) somewhat. I also feel guilty because I have pulled back to try and force them to accept some extra support, because I know they will choose not to and the inevitable crisis will take place.

She really just sounds like a journalist to me or someone wanting ideas for an article they are writing and this is why a lot of people are being in snarky in their replies. Because they've seen this thing many times before.

The biggest issue with elderly parents is actually getting them to accept any help that isn’t from you. ASC have tried to do at least 3 needs assessments over the past 12 months due to various safeguarding referrals but due to the fact they refuse and are deemed to have capacity there is nothing they can do. This despite the fact my father is 91 and my mother an abusive aggressive alcoholic with ‘alcoholic dementia’ even written in her notes. I just would like to wave a magic wand and get her removed from the house and put in a home and some carers going in a few times a day to look after my Dad. We do do stuff for them but neither of us are local and my mother is very difficult to be around so visiting, even once a week, is an unpleasant experience.

...And workarounds??
All of these seem to be things that are workaround-proof. Perhaps even better described as the total opposite of workarounds. Not a workaround for miles.

With 90 yo DM who lives by herself, it’s the conatant
•I can’t find my bag/keys/medicine/….
•My phone/kindle/…. Is dead and won’t charge
•My tv/wifi isn’t working
•Can y you take me to GP/hospital/hairdresser/….
its endless.

This.
Someone invent tiny air tags for hearing aids please.

DM lost 3 during a two month stay in hospital.

Oh goodness! Yes this and we have AirTags on various things but then he forgets how to us that/ find app on phone! Thing is also there is a very narrow list of who is allowed to do certain things (with little logic). My sister is the favoured daughter but probably because she’s only just realised she needs to put Boundries in place!

A few weeks ago she was in Australia. Dad messaged her to tell her his tyres needed pumping up. He knew she was in Australia, she pointed out she was in Australia and said there was nothing she could do about it. She then suggested he contacted her son, his grandson, who is a qualified car mechanic and who lives about 10 mins away from him to come and take a look. ‘No’ Dad said, ‘I’ll wait until you get back’ despite that not being for another 2 weeks 🤷‍♀️

This is something we would have appreciated for MIL. DH had the banking and bills sorted out, but food shopping was a real issue . MIL had undiagnosed dementia; SIL did online shopping for her weekly but it was hit or miss if everything needed was ordered.

We later realised that MIL was storing food all over her flat, so when she opened the fridge there was nothing to eat; but take a look in the laundry bin and there you would find several ready meals festering in the warmth.

Lifts were a huge issue as that was totally down to DH & I, and frankly, I quickly came to resent it all. Every errand grew arms and legs , every trip took longer than planned for.

So a service to take care of that would have been very helpful.

Lifts. DM goes to a specialist 4hours away, so its a 3 hour drive to her, 8 hour plus round trip and 3 hours home again. Its impossible to do in a day, so I end up taking 3 days off every time.
And the gap between care provided and what's needed is huge. Personal care doesn't include laundry or shopping or running a dishwasher. Im expected to do that when Mum can't, which means visits are spent cleaning. Which pisses DM off as I'm doing g it all wrong.

Id pay for help, but she won't take it. She will alow her 95 year old neighbour to do laundry for her though. So what i want is a "fake neighbour " service.

yes @turkeyboots
really sorry if this isn't helpful as I have no direct experience but I remember a friend introducing someone as 'a friend' of hers who was able to slowly build up a relationship with the elderly relative, who would not accept any form of help. I think the idea was mostly only to provide company, trips out etc but I suppose once established it could be expanded. The friend was being paid, obviously and I don't know what else they did. Anyway the point is that the relative accepted a friend popping in etc where they wouldn't have accepted a carer.

A few things.

I would like a trustworthy company to deal with property issues. From maintenance to moving. My mil doesn't know where to start getting things repaired / calling a plumber anymore. She still looks for a yellow pages. Be like a concierge service for your house.

I think there is a real need to help people with hospital appointments and getting to and from them. But also an emergency service for older people who have falls and need taken to hospital. A trustworthy person to go to hospital until I can get there. We live 500 miles away and can't get home quickly. A lot of older people have no one. You should have a buddy to hold your hand so to speak.

I think something like nct for retirees would be good. It would be good if people were matched with other locals to socialise with in older years. But more so taught how to plan for and manage their old age. You need to think about your health and what happens if it declines. If you re able you should put yourself in a property that meets your needs, is accessible and maintainable. You should get your things in order when you are in your 60s and still able. You shouldn't have to wait for a crisis to think about downsizing.

Another thing is that you might start one task and find it generates ten more tasks, especially if your relative lives in an old house for example. So simply getting someone in to paint the skirting might reveal damp which means the wall needs re-plastering and the carpet replacing, oh wait the floor isn’t level and needs to be re-laid and now I’ve moved the furniture to replace the carpet, the furniture’s fallen apart and needs replacing (this is a real life example).

And the person themselves isn’t capable of organising or choosing any of it so it falls to you and you have to take time off work for every tradesman or delivery as they won’t hear the doorbell as they’ve lost their hearing aids again and have forgotten they were coming anyway.

Or a simple trip to the GP for swollen ankles generates a whole battery of tests needing three or four appointments in different places.

Jointly is an app that will do this.

Some councils have a Care and Repair service, this might just be in Scotland.

Tech support. - my parent can’t use a tv well
anymore. -
remote controls these days have to many tiny buttons. They can’t manage the menu based operation of modern tv channels and other devices. -
they just want to press a button to get the chanel they want- things like catchup and iPlayer are too hard to use.

Shopping. - not an online order -
going to the specific shops they’ve always used -
sorting the fridge and clearing out of date food.

I feel this is all stuff that can be found relatively easily using tools like google and ChatGPT.
so for me the gaps are around the really practical stuff and adaptations eg appliances and devices adapted and simplified so they can be used directly by the older person which I would be interested in.
Hope that helps.