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?

I think you have to back off and stop doing stuff and just become very.. “ok then”

i used to be a carer and if you get good ones they can usually help with suggesting/implementing stuff
I got someone into the shower who hadn’t for 6 months because she was embarrassed being undressed in front of someone. You find what works and what tactics to use

Posted too soon

my mum was very stubborn, she would do things like whinge about the pain she was in but refuse to take any painkillers. I told her I didn’t want to hear about pain unless she did something to help herself

the only time I overruled her was when she rang me crying at work because of a severe headache and I ended up sending an ambulance, she went in with suspected meningitis and was too unwell to argue back

The only thing you can do is be clear to everyone about your boundaries. It’s reminds me of 6c of dealing with an alcoholic. It’s the same kind of selfish behaviour but coming from a differenr route.

I’d just buy her the odd ready made meal and put it in her fridge without making a fuss. Tell her you don’t have time to cook but there’s something nice for her in the fridge waiting. Say you have to make things manageable for yourself as your focus needs to be on your kids. Then focus on your kids. You will need to step back from DGM and let things fall apart to a severe extent. This will hopefully create a need for the adaptations, presently you’re all meeting her every whim and enabling her behaviour despite the detrimental effect on your own families.

DF is definitely doing this. I don't want to go down this road, it's already been a lot. I guess I can't control what DF decides to do, he can choose to run himself into the ground as a grown adult. I do say no and set boundaries, just struggle internally with the guilt, because it's usually either said or implied that I am being selfish or unkind.

Take a step back, let her do what she wants. That’s generally the only way. If she falls or is hungry, those are the consequences of her actions. And let your father deal with her. Sounds cold and harsh, but there is no reasoning with some people. So they have to learn the hard way.

Yes, as others have said, you need to take step back. Leave your father to deal with his mum.

This is a hard one to learn, but no one can make you feel anything. You are choosing to feel it. No one reaches down inside your body and squeezes a gland to produce the hormones that create your emotions, you drive that cycle yourself. Yes it can be influenced by your upbringing and conditioning from people around you, but fundamentally it is still under your control (assuming no medical conditions).

So own it. I am making myself feel guilty about DGM not eating proper meals. I am making myself feel not worthy of love about DF telling me I should help DGM more

Its amazing how it becomes easier to see what the best path is once you frame things this way in your mind

So sorry to hear yet another elderly person is doing this to family. There are an army of us in the same situation and you will get some really good advice on here. It is manipulation to guilt trip you all to do everything. No doubt she has used the ‘well Mrs So and Sos family do everything for her’.

This site is useful https://outofthefog.website

You step back, disengage and wait for the shit to hit the fan. I'm live in carer to my remaining parent and you cannot force them to do things. Even if you know the consequences of not doing those things. It will drive you nuts if you keep trying, it is the very definition of flogging a dead horse I'm afraid.

Let her do what she wants. You cannot control it. If you go and live there 24/7 and do everything will that assuage your guilt? Maybe, but more likely you'd spend even more of your time arguing. And it's not realistic anyway. She's got carers and discharge support and you're not turning your back. Try to let go of some of the guilt, I know it's hard.

Just let DF get on with dealing with her. Back off.

It’s the guilt you need to really work on as you can control that and you can’t control your mum. I know you know this! It helped me to understand that just because I feel guilty doesn’t mean I am , it’s a feeling not a fact and it’s a feeling I am creating, no one can make me feel anything. That helped me take a bit of ownership. It’s hard though.

What an awful take on this! Maybe, just maybe, someone who’s 90+ years old might have an opinion on how they want to live the last few days / months / years of their lives without having their children / grandchildren making decisions for them!

What exactly is it that you’re being expected to do for your grandparent?

@Soontobe60 I can see your point of view. I speak only as someone who has lost a decade of my life to elderly parents who refused to try anything suggested to make their later lives easier. Point blank refused but expected me to be at their beck and call.

This is true. DF is there a lot and they argue and bicker to the point where I can't bear to be there with the both of them. My input is largely there to give him (and her) breaks!

The time she's been in the respite place has been nothing short of blissful. All I've had to do is social visits and liaising with her medical team for a few weeks. I do tend to do a lot of that as I work in healthcare and very often I am the best person to. DF gets snappy with them and frustrated because he doesn't always understand systems, etc. He thinks everyone should treat DGM as more special than other patients. DGM is, of course angelic with staff and outside carers, will agree to everything they say, then as soon as their back is turned, will tell us she's not having any of it. We got here because she refused reablement care following her last hospital admission, told the hospital family would look after her, told us the hospital didn't offer her any post discharge support. She is very manipulative. I don't know if she always was and I never realised, but she certainly is that way now.

@BlueLegume I'll take a look at that website, thank you. We get conflicting messages - on the one hand, it's "I don't want to put you out" and on the other, "but in my day, family did everything!" You get whiplash from it all.

@SeaToSki you are spot on about not being worthy of love in my family unless you are doing things for them. Everybody is very transactional. And nobody really knows how to show love and care except in the form of material things. DGM got a significant medical negligence payout after DGF died and for all she is difficult, has also been financially generous with DC, and I've gritted my teeth on occasions for their sake knowing the inheritance, if it doesn't all disappear on care fees, would really help them launch their adult lives. But sometimes I wonder if it's worth it!

How I sympathise, I had this with both of my very elderly parents who, because I was a retired district nurse, thought that they’d cancel any arrangements for care at home because I would do it. And, of course, I was free labour, they did everything they could to avoid paying.

I nearly ended up burnt out, a 38 mile round trip at any time of day or night to clean up after faecal incontinence (‘you should be used to doing this’ anyone?)
Because they refused to wear pads or take prescribed medications? Of course my two sisters who lived very near them couldn’t be asked to do it.
The FOG was overwhelming. Thankfully they were eventually forced into nursing home placement because they were hospitalised after having falls.

i think as far as the cooking goes, she will end up living on toast and tea and at some point will fall in the kitchen and be back in hospital. Tbh I would stop trying to prevent this as she won’t let you.

She won't eat any sort of pre-prepared food. She refused council meal deliveries (which I understand, I gather they aren't great) but has said to the social care team that I will batch cook for her so she can just take meals out of the freezer and have the carers do some steamed veg and potatoes or something. She never spoke to me about whether I'd be able to do this. I used to bring something over like a lasagne or cottage pie once a month that she could portion out. But cooking for several weeks at a time when I've a full time job, 2 DC and a smallholding?

Refused a local voluntary service that provides transport to medical appointments. Says we will take her. If DF is ill or has an appointment himself, that means either I have to shift my work week around, drive 3hrs of an evening, try to work remotely at her house around the appointment, or take leave to do it (don't have any left this year) then drive 3hrs home the next evening, or we have to postpone appointments she needs because we can't take her.

She needs new furniture, which will mean someone being there to take delivery and also she wants the old stuff moving into different areas of the house, won't get rid of it. DF and DGM expecting me, DH and the boys to come and sort all that (bear in mind we live a 3hr drive away). DF can't, he's not physically strong enough. Her neighbour's grandson apparently wants one of the surplus beds, and she wants us to dismantle it and take it to them. Won't pay for the delivery people to take anything away. I have no idea when on earth we are supposed to do this in the run up to Christmas. DS1 works in retail (gap year) and works most weekends. DS2 does sports and is training for a competition in Jan so I don't want to pull him out for a weekend to play furniture Tetris. DH takes him to that.

Everything with DF and DGM is "I'll think about it" or "oh, lets just wait and see" - nobody plans, nobody takes action, and then they get in a mess because she's going to be discharged soon and nothing has been sorted and they're panicking and it's usually me that has to sort things quickly because everyone else is flapping and wringing hands that they can't easily get the delivery slot they want just a few weeks from Christmas! I've said this for WEEKS...we need to sort these things, we need to have them in place. But they just delay and procrastinate.

Or maybe they’re struggling to come to terms with the fact that their quality of life will continue to decline from here on out, all while they are facing their own mortality knowing they might not wake up in the morning and want to keep any control and agency over their life that they can rather than feeling like they don’t even have any choice over what they eat.

It sounds like a horrible thing to have to come to terms with - all at the same time that your cognitive abilities are less than they once were. I can imagine I would struggle with the transition into that phase of life too.

I imagine in most causes it’s more like a sort of trauma than a personality disorder or narcissism.

Ignore the furniture. It’s not ideal but never mind.

if she’s accepting care (three visits a day) that’s good.

if your DF is happy to flap around her let him.

it is very hard to step back. I’m going through it at the moment with my mum and I’m severely disabled. She still expects me to look after her even though I physically can’t.

the guilt is unpleasant.

Having family enable this crap behaviour is the worst situation you can be. Everytime you talk to DF DGM you need to be very clear about what you can and can’t manage and tell them DS have comitments including work so they can’t come and help.

Who mentioned narcissism? My link to the FOG website was mainly directing the OP to learn how to avoid felling guilty, it is really good.

Yes they may well be fearful of their mortality but when good people have tried for over two decades to gently suggest at first things that might be helpful and have been ignored it is difficult to sympathise. Yet the same good people are called upon when the inevitable crisis occurs, putting all of their own lives on hold to manage a completely unavoidable situation. The ‘we’ll think about it…’ mentioned by @CrazyGoatLady simply means no. No to ready meals. No to using food from the freezer. No to having a cleaner/gardener.

Without malice I have lived like this for over 60 years - manipulative behaviour from parents who know my good nature will bend to their requests. It is hard being old but it doesn’t creep up on you. My parents have been procrastinating for decades about moving to suitable accommodation. Never happened and it is too late now. Yet we had years of them sending us links to places they fancied - always way over budget.

Anyway not to derail thread. @CrazyGoatLady you have my sympathy 💐

Your DGM and DF both have mental capacity to decide what they want and what they are willing to do. As do you @CrazyGoatLady

You’re not all in agreement and that’s fine. As a capacitous adult you’re free to have boundaries and stick to them. They may not like it but that’s not your problem.

It’s easy for me to say now that I’m no longer in this position but you need to be firm about what you are willing and able to do and what you’re not. And then stick to it. Let the fall out happen and then let local services deal with it.

Unfortunately this is an all too common problem that I have seen both personally and professionally. There isn’t a solution that pleases everyone, but you have to put yourself, your DH and dc first here.

Good luck!