How to draw lines in the sand re: help and support

[SmaugMum]

I’ll try to keep this as brief as possible. I’m a totally lone parent to two children, one of whom has a physical disability and significant emotional issues. In the last nine months I’ve become the default carer to my elderly parents, both of whom are physically frail with severely restricted mobility, and with the added complication that my mum is in very obvious cognitive decline (appointment with a Memory Clinic doctor in a fortnight to determine more).

Anyway, like many of you here, I’m run ragged trying to maintain two homes, keep two households going, doing all the transporting to the multitude of doctor and hospital appointments, and I’m starting to feel resentful.

I have a sibling who lives solo 200 miles away (who is in denial about mum’s cognitive decline) and maintains the prodigal child status by phoning my parents twice a day. But that’s pretty much it. I’ve been asking (well, in several heated discussions that have turned the air blue) for said sibling to organise a supermarket delivery service for my parents. Weeks later, and I’m still doing the shopping. My parents are old school and have never had a new-fangled shopping delivery; they prefer me to pick up the orange-stickered reduced items they’ve been used to buying all their adult lives.

They are effectively living in one bedsit-style room with a kettle, toaster and microwave. My suggestion of installing a stair lift to enable them to access their downstairs kitchen and maintain some semblance of independence was met with ridicule, like I’d suggested blowing all their savings on a trip to Vegas.

It will probably not surprise anyone here to learn that between my sibling and I, only one of us has a vagina!

I’m so stretched, my children are fed up because all of our weekends are consumed by helping their grandparents. I’d like to know how other people in a similar situation have managed to draw effective lines in the sand in terms of what they are prepared to do and not do?

For example, my sibling doesn’t have a car (no need in Zone 1 London) so is visiting my parents by train next week; my request that taxis are booked to transport my mum and dad to their various hospital appointments has been met with radio silence. And every discussion I try to start about new ways of doing things ie shopping home delivery is shut down with the implication that I’m being deliberately awkward.

It sounds like you need to employ stronger boundaries then.

Mum & Dad I can't do xyz anymore you need paid help to do those things I'm not superwoman.

@MichelleScarn

She cant control her db actions ( hes respecting his parents wishes) but is trying to instead of looking at her own Ah so because db says "look Smaug Dparents don't want to pay for anything and want you to pay for and take charge of everything, so this is what we need to do, ok, its respecting them...'

Nope not at all. Op shouldnt be paying for everything and running herself into the ground. She needs to say no to her DP not attack her DB.

@Moonstone1234

I have always thought us living longer and longer is a ticking time bomb. We pat ourselves on the back that we are doing all of this for the very old but is it a poison chalice? Older people looking after the very old, dementia (the most horrible illness ever!). My DM doesnt have dementia but she gets confused somewhat and worries about absolutely everything. Little things and then the tears start. Makes me feel guility, says she doesnt want to bother me but then just goes on and on about something very small.

Its certainly common that it seems to be just one sibling who does the very most (the others hover in the background giving 'helpful' suggestions).

What I am concerned about though is when people pass on with or without wills. The mess they leave behind because of their (and I am going to call it out - selfishness). Siblings not given equal shares for no clear reason, people coming out the woodwork making trouble especially where there is a reasonable amount of money at stake.

My DF fell a few months ago. Really bad head injury, thought this was it (got the phone call) but the hospital threw everything they could at it and he survived. He does tell me its no life and and plods on but his choice would be to go much sooner.

I think you're right here, really. A lot of people seem to accept the current system (i.e. families doing the brunt of the work and SS papering over the cracks where they can until everyone burns out) as just how things have to be but Lord I hope I don't fade away in the same situation as some of the elderly people in my family/friends' families. A terrible way to end your life in some cases. Of course I don't know what the answer is and doubt anyone does.

I can empathise with you here OP. I too had a disabled DC for whom I was a FT carer. My Dparents - both in their 80's were muddling along in a 'we don't need any outside help' kind of way inspite of my DM's numerous health conditions and hospital stays - until the day I got a phone call to say that DF had collapsed and died. My DM was left on her own 75 miles away from me and nearest other sibling. I'm afraid I made it quite clear to Social Care that whilst we would do what we could, we weren't in a position to commit to daily help due to my other caring responsibilities, distance and DB1s two jobs. Social care had to step up even though DM was resistant to 'strangers' in her house. I did, however, set up a Tesco delivery for her and got a shopping list from her weekly, which worked as she could access the freezer. We also had to go over most weekends - which meant using all our respite allowance as we couldn't take our DC with us and get stuff done. DM was also reluctant to pay for taxis for anything and to an extent DB pandered to her by doing 150 mile trips using his 1 day off a week to ferry her to appointments. On one occasion she broke her false teeth and rang DB to come over and sort it as she needed to get them to her dentist to be sent to the lab for repair. DB wasn't able to go at short notice so booked a taxi for the teeth! We still laugh about that now a number of years later. DM moaned for quite some time about the £7 cost of the taxi - but never gave a thought for how much it cost DB in petrol (she never drove in her life so was oblivious to the cost).
I think you probably need to give express instructions to your DB to sort out anything he can do both on his visits and from a distance. Once the supermarket delivery is set up then hopefully the demands for groceries will reduce. Are your parents claiming attendance allowance? (assuming they are of pension age) which could be used towards paying for some domestic help.

When my DM came back from hospital after a hip op she could barely manage the stairs which were very steep. The NHS give you a certain number of hours but it really wasnt doing it for her and I was 150 miles away and working full time. DB and DS were abroad and giving out all sorts of stupid ideas about what I needed to do next.

In the end Mum brought some more hours using the same carers company. Or rather she paid for it and I arranged it and ensured that they would do her food shopping. Luckily a local Tesco is just around the corner. That made a real difference to everything.

If you parents are in a 7 bed house they will have money. You might even be surprised how much they do have. They will be keeping it for a rainy day but now is the time to use some of it to make themselves more comfortable. Please dont let them mess you around and state they only want YOU to do it. If they want help you will help but on your terms not theirs. There are taxi firms and the GP might be able to help with transport for hospital appointment (they did with Mum and they are used to dealing with confused elderly people). Again they will want YOU to do it but dont let them emotionally blackmail into doing it. The NHS move around appointments all the time and older people never question this. They just assume that whomever was taking them on 6th May will of course be available on 10th May.

I was staggered by how much money DF had when he finally admitted he needed to move to a care home. Its fully funding his care which is good but that isnt what he was saving and hoarding it for. I do wonder what he was planning to do with it.

He did spend the last 20 years pleading poverty, not bothering with his house when he could invite himself to other people's. We moved him out of his old house and it was truly disgusing, had to have professional clearers in because there was just so much junk and crap. His bed was literally a camp bed and he was peeing into a milk bottle overnight (and missing!) but that was OK because he rinsed it out in a sink in the kitchen that should have been condemed.

similar with fil. When the pil had to go into a home we were staggered - staggered - at how much money they had. They had been so mean over the years, really really mean. And all their savings went on nursing home fees (and only a "bog standard" nursing home at that, as nicer ones would not take severely demented mil) as they both lived a good few years requiring a lot of care.

I got married late in life. The one thing I wouldnt put up with is being with someone who was mean with money. I have my own money and dont expect anyone to fund me for anything but people who are constantly stingy with money are very very offputting.

Getting my tin hat at the ready but it seems to often be men......

I think what we are all learning is to save a bit for a rainy day ... and hope we know when the rainy day arrives! I think it had to be a hurricane for some older people 🙈

It is an extremely unattractive trait. The thing is I've noticed is that as we age our personalities are amplified. There's nothing to be done!

I think a lot of the very elderly either want to leave to others and so dont spend (please dont talk about the war years etc - some people are just very stingy) or want to keep it all to themselves for that rainy day but are also on the look out for anyone else who can fund them, be that the government or their family. My DF was obsessed with Attendance Allowance. When it was running out he reminded me every single sodding time that I needed to priortise it. He knew it wasnt means tested which is why he wanted it. When I first looked into it I asked him what he used it for. This and that he said but actually he was just hoarding it.. His house was horrific, his neighbours were just fed up with him, he literally did nothing around the house, fence fell down and he just left it. It was only when the other side offered to do some repairs (at their cost)that his eyes lit up but he also reminded them that he was going to ensure that the repair was done to his satisfaction.

Having said that he is in a much safer place now and he can fund the rest of his days in the care home.

I have always thought us living longer and longer is a ticking time bomb
Agree!
We have the technology to keep bodies alive for longer but no provision to ensure that the elderly have good quality of life, expecting relatives to provide care is counterproductive and unfeasible.
Of course if all relatives said 'nope' the social care system would collapse
instead lots of the overburdened 'sandwich generation' are slowly collapsing out of sight :(

OP, as the reenablement care is finishing, ask for them to be assessed for ‘continuing care’. While enablement is paid by the NHS, Continuing is paid by Adult Services.

Continuing care will cover dishwasher emptying in necessary. Washing, dressing, a microwave meal.

The AgeUK website is really helpful on benefits and support.

They may be eligible for Attendance Allowance.

I would strike while the iron is hot and your Mum is used to having people come to the house.

I am very grateful my own ageing parents are still doing things for themselves, paying for a gardener, can shop online when needed, etc.

pickle OP is allowed to make different choices regardless of her brother. Take him out the equation. She doesn't need his back up. She doesn't actually 'have' to do anything. If she feels unable to step away that's not his fault.

@RainingBatsAndFrogs

OP, as the reenablement care is finishing, ask for them to be assessed for ‘continuing care’. While enablement is paid by the NHS, Continuing is paid by Adult Services.

Continuing care will cover dishwasher emptying in necessary. Washing, dressing, a microwave meal.

The AgeUK website is really helpful on benefits and support.

They may be eligible for Attendance Allowance.

I would strike while the iron is hot and your Mum is used to having people come to the house.

They wont necessarily get funding, if the DP have savings over the threshold then they will be self funders. Like wise if they dont qualify for CHC on health grounds. This often the sticking point as the elderly often refuse and say my daughter/ DIL will look after me. The cradle to grave mentality is also still around.

TempleTree I agree: it isn’t an easy process, which is why reading the AgeUK info is a helpful guide through it.

I don’t think Attendance Allowance is means tested?

I had to do the forms and assessment with my Mum. Most of the boxes that she ticked ‘yes’ for , as in ‘are you able to manage your shopping’ for e.g translated as ‘yes, of course, my Dd does it all’.

And I had to be clear that I was definitely not available as a regular carer due to my own issues.

Having two elderly parents divorced long ago, only sibling in the area. You really need to draw up your own rules. Of course do what you feel you can do but honestly don’t let them dictate to you what you do and also how you do it.

We do though need to think about prolonging life just because we can.

What about home based respite for yourMum so Dad can do his own shopping. Have a look for local services that can help. Voluntary or paid. There may be volunteer drivers to take them to hospital appointments for example or digital connectors who will help them get online. Also Attendance allowance to pay for shopping help.

@RainingBatsAndFrogs

TempleTree I agree: it isn’t an easy process, which is why reading the AgeUK info is a helpful guide through it.

I don’t think Attendance Allowance is means tested?

I had to do the forms and assessment with my Mum. Most of the boxes that she ticked ‘yes’ for , as in ‘are you able to manage your shopping’ for e.g translated as ‘yes, of course, my Dd does it all’.

And I had to be clear that I was definitely not available as a regular carer due to my own issues.

Sorry I was referring to CHC not AA

RainingBatsAndFrogs
OP, as the reenablement care is finishing, ask for them to be assessed for ‘continuing care’. While enablement is paid by the NHS, Continuing is paid by Adult Services.

Continuing care will cover dishwasher emptying in necessary. Washing, dressing, a microwave meal.

This is not correct: reablement is six weeks, then care can be arranged through social services but is means tested. Continuing care is for high level of need needing nursing care for breathing, mobility, nutrition, behavioural, cognitive, altered state of consciousness and continence.

Attendance Allowance is not means tested. I managed to get someone out from the Local Authority welfare and benefits department to do my DMs application so that was another job I didn't have to worry about! She was then able to use the money she got to pay for carers and a cleaner.

OP I am single and half the country away from my 90-y-o DM but have no siblings (or indeed any other family at all) and I am familiar with the War of Independence that happens at this point - my DM has clung on to the idea of independence by delaying getting help at each stage but had to shift her position when she had a fall a couple of years ago. Still it has been a battle to get her to accept a care company, which I'm finally putting in place and finally getting co-access to her bank so I can spend some of her money on her (she has lots of it, far more than me).

I won the battle by not giving in or rising to the bait when she let it be known that she was the only old lady in the entire county that did not have several daughters living next door and round the corner, all with cars and who were constantly popping in with baked treats and handy sons-in-law and grandkiddies.

It's not on, in my view, for parents to try to hang on to money to disburse in any other way until they have paid for their care, and it is not on for parents to use their daughters as unpaid carers.

There's a sort of instinct in elderly people as they feel control slipping to seek care from their children and many elderly don't see how self-centred that is, any more than we thought we were self-centred as children. It may come from a place of fear and may also be manipulative but it's up to us to put boundaries in place while remaining kind and engaged but not enabling.

That's hard but how much more of this do you want to do? You can't decide your sibling should do more and if he thinks certain things should be done, he'll have to do them. Lots of sensible posts above about who to get involved on an official level - that was my priority and it worked well. I have them all on speed dial and they have been great.

I think the boundaries must be yours OP, not your parents or your brother's, you make yours independently and as well as not letting them cross your boundaries, you can't dictate theirs. You can't get anyone else to make boundaries for you, you have to do it and they have to be real and sustainable. Good luck.

You've got 3 issues. One is that you don't want the main carer role any more, that's fine, you just stop. Two is that your siblings doesn't want the role either, that's fine they don't have to . Three is your parents refusal to help themselves by accepting outside help, that's not fine, they're the ones with the problems and they don't get to dump them onto you. They need social services involvement, or to pay privately for carers, and your mum at least sounds like she may need to go into a home. Your parents don't get to choose an option for their care which ruins your life. Leave sibling to deal with absolutely everything when they visit. Don't pre plan to make his life easier. Text him dates/times of appointment then switch off your phone and be unavailable.

I don’t think it’s as simple as cutting parents off. You would have to be very hard-hearted and for he parents to have been bad people to turn your back on them when they are struggling, even if they are being totally unreasonable.

I think the big sticking point, as many of us agree, is a) accepting outside help and b) paying for it. As @BinaryDot mentions, the gold standard is daughters and dils running round and able sons and sils doing diy/lawn mowing etc. But they have to play the cards in their hand, not the cards they wish were in their hand, and the battle is getting through to the elderly person that they are going to have to get outside help. There’s no denying that this will be a hard battle and it is a huge effort to remain firm but kind in the face of frustration and anger and a whole mountain of emotional blackmail.