DGM and refusal to do, well, most things that would be vaguely helpful

[CrazyGoatLady]

DGM (mid 90s) has had a successful stint in respite/reablement care. They are looking at discharge soon. She's doing much better, has had a care needs assessment and is predictably now refusing to implement most of the recommendations, not being remotely realistic about how she will manage. She is agreeing to carers 3 times a day, but won't have any other adaptations in the home or adapted furniture etc. She's will not hear of any convenience food options, even good ones (e.g Cook, waitrose, m&s) and thinks she'll be cooking meat, potatoes and 2 veg when she can barely stand for 5 mins.

We are all worried how she is going to manage when she goes home. DGM seems utterly determined to be as bloody minded as possible, to do as little as possible to help herself, and while saying she doesn't want to be dependent on others, doing things to increase her dependence on us and our obligations, because she just wants everything "the way it was before".

I posted here before about the condition she was in that led to her having to temporarily accept a residential placement. Nobody has learned anything, DGM is still behaving like a stroppy teenager and DF still thinks we just need to be nice to her and do what she wants and if I say anything I just get told to have more patience, empathy and understanding. She has none, absolutely none for us! No dementia, she has full capacity and knows what she's doing. If I or DF's wife say anything about feeling fed up with her behaviour, DF strops and says OK well just stop doing anything for her then, just pull out and I'll do it all.

I am, I'm ashamed to say, feeling compassion fatigued, and DF's responses don't help. DF would have me abandon my own life entirely in the service of hers if he could make that happen! I've felt for some time that he hasn't much care for me as a daughter, only as a tool to help care for his mother. Nobody else's needs matter to him any more, including his wife's. He is trashing his health, marriage, relationships with DC and DGC, he knows he can't manage everything but he's pushing us all away and pretending we are the problem for saying there's a problem.

I suppose what I'm asking is how do you cope with the intransigence and refusal to do the simplest things to make life easier? And how do you cope when a family member also isn't accepting reality and just thinks good care = do whatever someone wants, no matter the cost? DGM has been stubborn as a mule all her life, but until recent years, it never impacted anyone else. But it now is impacting all of us. How on earth do you recover the compassion reserves but without becoming an enabler?

My sympathies, and i know all about this from my mil, repeated falls, constantly taking risks that i know will result in her falling again. Worried about her going out in the wrong coat, worried about her using the gas (her judgement is compromised after a stroke) I was so affected by worry and dread, that i would cry after leaving her home each weekend. My dh never saw things the way i did. He is a completely different personality. I became quite ill over it all. Something had to change.

I stopped going and i limited my exposure to it. You have to let the chips fall and stop rescuing other adults. Dont batch cook, she can pay for wiltshire farm or "cook" . Say you cannot dismantle the beds or move them, you both have slipped discs. The more you do, the more you will be expected to do. If she has capacity which you say she does, then a bad decision is her decision, let it stand. Your dgm and your df are adults so when the shit hits the fan, just let it happen. Theyve likely got used to you picking it all up and sorting it out. I know its hard. You dont have to be guilty. A good phrase, "im sorry, that simply doesnt work for me". That goes for the transport, the moving furniture (do not do it, i buggered my back),the batch cooking. She wants to be independently living in her own home, then let her be independent.

This sounds an excellent practical suggestion and has the benefit of transparency over who is doing what.

Do we share a grandmother? 😂 She sounds just like mine. We have managed it by pulling right back, visiting from time to time but absolutely nothing which could be construed as care. If feel bad for her as,a human being but not as my family member. But her entire life she's been demanding, controlling and manipulative of those around her, conderned only with herself and her comfort above all else. In order to protect our own mental and physical health and our families, this is what we have had to do and she is having to accept support from SW. Like you I have absolutely no sympathy or empathy left for her. She brings out the very worst in me so I'm no longer going to participate in any of her games. Nor is my sister.

So my advice is to set your boundaries now, and stick to them. If you don't, you're going to find yourself being a perpetual, burnt out carer for her until the day she dies and then, by the sounds of things your DF will be expecting you to bend over backwards to care for him then.

Ha, yes a few similarities there! DGM has always been a force to be reckoned with and could be quite controlling. She also could be affectionate and fun and can have a wicked sense of humour, but is amiable only when life is ordered to her liking. If it isn't, you know about it! She is the last matriarch of her generation standing, and she has survived a lot - poverty, war, being an immigrant and considered "undesirable" by the English, marrying outside of community and sectarian bounds, struggling to have children, being widowed in middle age. She's tough as old boots, and in many ways I admire a lot about her, or who she used to be. I suppose a lot of these things she does are survival behaviours. She's had to be extremely resilient, persistent, and get through life by sheer force of will at times. But those same traits that once were helpful, now they are making life awfully difficult for her family, and she knows no other way than "battle mode". And nor does she want to, because it works for her. She's learned that if she digs in hard enough, others capitulate. DGF certainly did for 35 years of marriage!

She won't ever say "I'm lonely/scared/low/sad". She spends her energy engineering life so she doesn't have to feel anything uncomfortable. If she can arrange things so her family have to be there, she gets to stay in her comfort zone, she doesn't have to ask strangers to help or tell them how she likes her tea. It's easier for her because we know how she likes everything. But she wouldn't move when she was well enough, either DF or near us, so we are all stuck in an imperfect situation. She can't will her way to making it what she wants now.

I’m a self employed carer and see this a lot. The root of it usually stems from a fear of loosing control and independence.
You say she has carers going in 3 times a day? Why are they not helping her with food preparation? Does she have private carers or agency carers going in.

I batch cook for clients in their own homes. I will cook a meal for 4 divide it up and freeze 3 portions and serve one. Sometimes I will do a 3-4hr cooking day for them and do several weeks worth of meals.

What types of meals does she eat? Would she eat things like stews and soups? If so could the carers not chuck it in a slow cooker in the morning for her and serve it later?

@businessflop25 that sounds great regarding the batch cooking. I did similar with my own mother. She then threw it away/told me it was inedible. Sadly some people won’t get that we are trying to help. The mantra of ‘I don’t want that/that won’t work for me’ are rolled out. They also have no answer to ‘what do you want?’.

I think we have to appreciate that some people are just difficult. They do not care how our lives are impacted. You sound fantastic and I would pay good money for services like this if I could rely on my own mother not throwing it all away for attention.

With older relatives I've cared for, it's been the threat of worse that's helped:

The experts say that without this furniture/mobility aid you're likely to have a fall. That would likely put you in hospital for a while and possibly a care home permanently. If you want to have a decent chance of staying in your own home long term, you'll get/use it.

Aw, I can see why you may feel torm. My DGM has been indulged her entire life, has commanded all of us to do her bidding, pretended she can't when she can, so I'm afraid I don't have as much empathy here. 🙈

@gallivantsaregood yeah, it's hard because I guess as she's got older, the less palatable sides of her personality are what we get most of the time and they are not counterbalanced by the better aspects. It's a strange thing (and rather discombobulating) when someone presents on the one hand as fiercely independent, but then does things that will in fact encourage more dependence on others, not less. And as @BlueLegume says, doesn't have an answer when asked what they want. DGM won't communicate anything directly, she goes about getting her needs met covertly, and I do think she exploits the fact that she knows we won't let her starve or be neglected. She's always had this pattern of being quite covertly controlling, requiring others to mind read, splitting people and using disapproval and withdrawal, but it didn't have the same impact when she was younger. We could ignore it or not engage then in a way that's more difficult now.

I agree with @BlueLegume a lot of it is for attention. My mum wasn't interested in solutions she wanted me available 24/7 I live abroad so not possible, 2 siblings live 2 mins away. The telephone became weaponised, wailing calls that she had fallen and injured herself, when asked how she got up to use the telephone she would go mad shouting 🤷 she wanted attention and room service. She was always nasty about my lovely husband saying I should leave him and come home.
Unfortunately the behaviour they use to force us to serve them has the opposite effect, we withdraw. My mum managed to upset everyone including neighbours, so her loneliness was entirely of her own making. It is extremely tiresome and unless people have had to deal with selfish oldies have no idea how bad it can be.

@CrazyGoatLadyif you read or listen to Mel Robbins “Let Them” it’s helpful on this. Basically do as much/little as you need to satisfy your own conscience that you have done what could reasonably be expected of a DGD. I think on your previous thread you said you visited once every 3-4 weeks, that seems decent considering the distance. That’s what you do and if you want to bring a dish of lasagne with you, then that’s good too.

I wouldn’t be sharing your timetable or trying to justify yourself. You don’t have to. As long as you can reconcile your own conscience with the level of support you are providing then you’re good.

In this scenario- been there, got the tshirt- the more you do, the more is expected. As the only DC I have taken a huge step back, I feel awful but there are loads of ways my DPs could make their lives easier that don’t involve me, and if they choose to refuse them, well they have capacity.

You aren’t the DC you are a DGC with your own young family who have to be the priority. DGM has other options- carers, ready meals, nursing home - your DCs do not. It’s a shame your DF isn’t wanting to spend time with his DGC and instead is crippling himself with his DMs care, but that’s his choice.

Sadly I think that the real answer to "what do you want?" is "I want to be 20 years younger and in good health."

They can't formulate that answer, because it would mean accepting that nobody can give them what they want, no matter how hard they try.

Very insightful post.

Do not be a driver for appointments.
Do continue to visit as you currently do and take her a treat.

Buy Parsley Box ready meals. They last for 6 months on a cupboard shelf, so no worries about being out of date. Also long life milk. if needed.

You can't force her, she has to come to her own decision, as will your Dad. Your own life and family take priority. Make sure that you explain that fact to them both. Anything you can do will be a top-up to whatever they arrange
Good luck.

@OLDERME great suggestions.

What is your suggestion if they will only attend appointments if YOU take them? Refuse to use taxis/transport etc?

What when you visit they tell you how awful you look/ wretch on the ‘treat’?

You buy Parsley Box/pre prepared meals and they throw them all in the bin?

Tell you long life milk is poison?

They lie by omission to make people think you don’t help.

@BlueLegume

They don't go to the appointment.

You dont take food treats. Hell, maybe you don't go.

You let them sort out their food shop themselves or let SS sort it if they can't.

Then they run out of fresh milk and have none when they want it.

You stop helping altogether. At least then its the truth.

Hard as it is to do these things, they are the only strategies which will work. Every one of those situations you describe is pure manipulation and you are being emotionally abused. Take control. If the person has capacity, they need to suck up the consequences. That's life.

If they don't have capacity a referral to SS,stating your concerns together with your inability/refusal to provide any care or practical support. This will mean they are assessed and support will be put in place if needed. And yes, they may well need to pay for that depending on their financial situation . Again, that's life

Do not make yourself ill, trying to provide care and support for someone for whom it will never be enough or never be good enough.

Not all little old ladies and men are kindly, poor wee grans and grandads. Young narcissists and nanipulators turn into elderly narcissists and manipulators.

A good carer should be able to navigate that though. I have had some incredibly difficult clients in my time. They key is absolutely not to take it personally and accept that they are having a hard time with the changes in their life. I guess it’s similar to having teenagers - you aren’t going to get it right all (or sometimes any) of the time in their eyes. But you present the options and what’s available and they then have the option to make sensible choices or deal with the consequences. If she throws the meal out - well then she goes hungry or makes herself something else. If she throws a strop then again that on her. Roll your eyes and get on with the day. But you can make the choice to not let it affect you.

Ask the carer to pull out a meal from the freezer and heat it up for her and then sit and engage with her whilst she eats. Simply them saying complimentary things about the food helps. When something comes out of the oven - ooh that smells nice etc. and then stay whilst she eats it.
I find a lot of people really struggle at meal times simply because they are lonely. Meals are such a social experience for many people. Particularly the older generation who would sit and eat meals together most evenings. Actually just sitting alone at the table can be quite uncomfortable. So having a carer sit and stay and chat with her over meals is often a really good way of encouraging people to eat and improving their mental health.

@gallivantsaregood
THIS
Such Great advice.
Simple straight forward and sensible.

IMO it’s more usually a case of selfishness/self-centredness, probably coupled with an extreme reluctance to pay for any kind of help that ‘family’ could (according to them) provide.

We had an extreme case of this with dh’s old aunt. No dcs of her own, so expected dh to drive over 2 hours whenever she wanted, plenty of money, just absolutely hated spending it. Dh would arrange carers for her, she’d just send them away - ‘too loud’, ‘too ‘common’’, etc.

She also expected neighbours (mostly themselves elderly and decrepit) to help her ‘for love’.

I used to have them on the phone wailing that they couldn’t do it any more.

My poor run-ragged dh eventually managed to get her into a care home, but she insisted that if the staff knew she’d got money, they’d find a a way to steal it, so dh had to pay the fees every month, and then get her to sign a cheque to pay him back.
And each time there’d be a shriek of ‘HOW MUCH!!!?’ 😂

Totally agree- provided they don’t want help from those same people and run them ragged and are happy to pay others to help care for them , sadly on this forum that is rarely the case