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?

You are compassionate op or you wouldn't be stressing about this on here. It is very hard when they don't want other people in the home and expect family to do everything. We have seen this once already with DHs mother and I can definitely see it gradually happening with my own mother. In my case I never back off from necessary things like taking her to hospital appointments, getting shopping ect. We bring her over to ours every Sunday for lunch. I SOMETIMES take her out, but not every time she would like to go.y own time/wishes/life commitments/social life are important as well. I have boundaries that so far I don't cross. I think you need to decide what are your boundaries. What are you prepared to do/not do. It's ok if the answer is nothing/ very little. Once you've made your mind up about these things, pleasantly, smilingly stick to it. Don't get into what your dad is prepared to do/not do. His choices are his own. Just don't gill in the gaps. When/if she becomes ready, cheerfully arrange in house support like cleaners, carers ect.
Keep these words in mind ..I care ...but I'm not her carer. Take care of yourself. So far so good regarding what I do for my 94 year oldum, but at 71 myself I'll no doubt be back on this thread in due course needed support because it's all gone pear shaped. Good luck 💐

Did you miss the part where I live 3hrs away and work full time and have 2 teens? Of course I cook for her when I visit, I love to make her a nice meal, something a bit fancier that she normally wouldn't have, and often bake and make enough food for 2-3 more meals. What I am being asked to do is cook 2-3 WEEKS worth of food for her freezer so she never has to have a pre-prepared meal bought from a shop. On top of work and managing my own household.

It is important that elderly adults with mental capacity are trusted as such.

If she has mental capacity then she is able to understand that the OP lives too far away to be of any constructive regular help, so she needs to adapt her expectations. If she cannot do that then she needs to deal with the consequences, just as any of us have to when we make decisions.

I know this sounds harsh, but it is the situation here. My disabilities mean I could forever be making demands of my family if I chose to - but I do not.

I am all for dealing gently with elderly relatives facing the challenges of old age, but they cannot refuse all outside help and expect family to pick up the pieces all the time. If they are mentally sound then they must be ready to own their decisions.

It’s very difficult. My DM has capacity. She has refused help from Social Services and signed a form to say that my Dsis and I are now her carers. She only told us this afterwards. Dsis felt so taken for granted that she hasn’t seen DM since, and she was doing so much for DM beforehand. I do admire my DM’s independence up to a point but she is unable to see how much strain she is putting on the rest of us.

Eh? The elderly lady isn’t some random neighbour who has asked for occasional help. Read the OP’s posts properly please.

My dad frequently says ‘my daughter will do it’ when offered help. Despite me working full time with 3 children and living an hour away. It could be anything from administering eye drops 4 times a day, to installing a new lighting system.

(I’m not an electrician)

Whoever had her sign this form needs informing that this is not the case. This should not have been accepted without consultation with you. I guess SSD were dealing with her refusal to accept help and needed to get themselves off the liability hook, but if she is a vulnerable adult they should have checked with you that her assertion was accurate.

Thank you.

I may be sounding quite harsh in my posts but I am not in the first flush of youth (though decades younger than OP's GM) and have longstanding disabilities. My family know that if I need help I will organise it. I do not expect them to be at my beck and call. When they are here I want to have fun, not watch them skivvying for me!

OP's GM has made choices. They are hers. They do not tie OP in to anything.

Now if she lost mental capacity, and indeed when/if I do, then it is a different scenario entirely ........

A poster on another similar post said that she had to ‘manage her exposure’ to her elderly mother. I think this phrase is very useful and I am trying to do the same.
As your DGM and DF have mental capacity, you will need to be brave and have a serious conversation with them both at the same time. Prepare a simple chart showing days of the week, morning, afternoon and evening. Add times of carers visits and any other things that happen on the same day each week. Go through it with both of them.
Make a similar chart for you, and plot work days, children’s activities, pick up drop off times etc. appointments for yourself and other family. Perhaps block off an hour each week to follow up on medical issues, appts. meds etc. (You may not use that specific time each week but the amount of time involved would be recorded.)
Decide before hand how much you want and are able to do - don’t stretch yourself as she has plenty of help already. Show your chart to your DGM as well. Get your DGM to write the day and times that you have decided to visit on the chart. Talk to her about travelling time and petrol and refer to ‘ I will leave ….. ‘home town’ at ‘such a time’) Cross reference with your chart too and agree when you will visit.
It may be possible for you to batch cook for 4 meals during your visit. Give her two choices…”would you like me to make you 4 lots of this, or this?” She will have chosen, you buy the stuff and use your time when you are there to cook and freeze it.
My sisters and I have done something similar and it has really helped to gain some control, help out a lot when possible (we share care daily) and organise our own lives more comfortably.
You are in a difficult situation and will need to be brave and strong, showing care for both DGM and DF at the same time which will smooth things along too. Would it be possible to have this conversation with your partner present too? Not just to support you but to remind the others that he and your family are very much involved which they could have easily forgotten.
Good Luck with ‘managing your exposure’ to both your DGM and DF x

That's fine provided they aren't making decisions about how their children live their lives e.g. being constantly on call.

You step back and let them say what they like. Don’t engage with talk about it. Get busy with your own things. Sadly these situations sometimes have to be allowed to develop to the point of failure before meaningful change will be considered. Protect yourself by doing other things.

I think this is a really good idea but honestly more for yourself @CrazyGoatLady than for your f and GM.

They are likely to find things on your schedule that they don’t consider important in your life and want you to remove them.

We found trying to reason with these types didn’t come to much. It is more important to know yourself and develop a certainty in yourself than trying to spend time convincing them. It is so much easier to change yourself than them.

Amen to that.

The link you posted is for personality disorders and narcissism.

But in these situations it’s best to remember three things:
no one can make you do anything
no one but you can control how you feel
everyone is entitled to live their own life how they want.

She can say no to ready meals and make plans for you to rearrange her furniture. If you don’t cook for her or turn up to move the furniture, then that’s on her. You know she’s going to say hurtful things that she probably doesn’t mean. Be prepared to shrug it off. If her behaviour is so far working for her, she’s probably not going to change it…

They are likely to find things on your schedule that they don’t consider important in your life and want you to remove them.

@Whatabouterytoutery yes, absolutely this. DF's view is that it is reasonable to expect I will have no life outside of work and caring/supporting. I am able to visit every 2-3 weeks, as the pp you replied to suggested I could provide 4 meals or so for the freezer. Letting her know that and asking what she'd like those to be is a good way to do it.

@CryMyEyesViolet I see where you're coming from. However, DGM is now dependent on others to live her life how she wants, so how far does that entitlement go in terms of encroachment on others' lives? Especially without their consent? There is maybe no easy answer. I had hoped we'd be able to have sensible, adult conversations about it, that would take into account everyone's needs, but the only autonomy that matters here seems to be DGM's. I just have to not allow that to happen, I guess, and take charge of that, as I have learned now I can't expect any care or consideration from family. I'm not sure I can control how I feel, but I certainly can control what I do with my feelings.

@CryMyEyesViolet @CrazyGoatLady
The glossary on the FOG website is incredibly informative. at no point did I mention the OPs elderly person having a personality disorder. It is just very helpful for anyone stuck in a situation of Fear/Obligation/Guilt to look beyond running themselves ragged.

https://outofthefog.website/glossary

Absolutely fine if she doesn't want to do what you want. You say no dementia so fully able to make own choices, then just let her, and she can live with the consequences of those choices.
What's not OK is her forcing others to help her and making their lives difficult. This is a form of coercive control if you ask me. Don't engage with it op.

Not if they can’t live that way without negatively impacting the lives of their children/grandchildren for days/months/years.
The wants of someone at the end of life don’t trump those of others in the prime of theirs.

Unfortunately both things can be simultaneously true. An elderly person will be terrified of impending death and loss of autonomy and younger person overwhelmed by elderly persons desire to pretend all is normal by getting someone else to do what they used to do.
It’s very sad and the saddest part to me is how it often destroys life long relationships. I have had to step back from my DPs for the sake of my mental and physical health. I doubt they understand or care. Doubtless we each think the other selfish. But I cannot destroy myself in middle age to do things for elderly that can be done by others. Administration and hospital visits are different as nobody else can do those.

I have a 93 year old dad my mum and sibling are both dead its just me I do understand but I also understand its my dad's life and its up to me to set boundaries and up to dad how he lives.

Oh Op, it's a tale as old as time snd I say that after a long career as a nurse in elderly care, and having gone through it with my mum.
One of the saddest tales I heard was a lady who thought she was managing with her mum, until she went home early from work and found her mum throwing the lunch she had left her down the loo. She realised she wasn't eating and she eventually managed to get her into res care.
My oldest sister and youngest brother insisted my mum didn't have dementia, whilst myself and my other sister, also a nurse, knew exactly what was coming, mum was found on the doorstep in her nightclothes looking for her friend.
I would suggest as hard and heartbreaking as it is, that you do the absolute minimum to keep her safe and sadly you will reach crisis which might make Df see sense. Wishing you much much good luck, it's a rocky road ahead

Buy the ready meal but decant into another container i.e. glass or something similar. Top it off with extra cheese if something like lasagne. She won't know the difference then. Equally, it is so easy to do a beef and veg stew in a slow cooker and lasts for up to three days.

Maybe talk to about how the adaptations will increase her independence not restrict it?

Sometimes people resist change because it feels like losing something but these adaptations will increase her ability to move, be comfy and have choices