I’m not at that stage yet

[user555999000]

Despite my mother having serious care needs, one of the main reasons she made everything so much more distressing and awful for herself and everyone involved, was her complete refusal to do anything to help herself or her situation. It drove me absolutely potty and the resentment about the pain and unnecessary trauma she caused me and my family by her selfish outlook I don’t think I’ll ever fully recover from.

One of her favourite phrases, which she would gleefully trot out when latest, horrendous crisis had been dealt with by me, was,

”I’m not at that stage yet” She’d almost smile when she said it to me.

For example, after falling and smashing her face in and breaking her nose, she removed the riser things from her chair in the lounge that the OT had put on for her, and she refused a Careline service. Because she “wasn’t at that stage yet”

After nearly a decade of my begging her to allow me to a cleaner or carer or handyman she only relented and gave in to a cleaner for 6 weeks. And then she ended up in permanent residential care.

It is insane to me that the ONLY external help she would agree to was two hours of clean about a month before she ended up in a care home for good.

My husband says her headstone should read, “Margaret Jones (not her real name) 85 years. Beloved mother, sister and wife. ‘Not at that stage yet’ “

That’s how bad the phrase became for us.

Why do they do this? Why, when you suggest something that will help them, do they refuse all help, and trot out such infuriating statements. Anyone else experienced this?

That sounds so frustrating.
I'm so grateful that my Mum was quite the opposite - planned ahead, downsized, chose sheltered accommodation and was actively considering a nursing home just before she went into hospital for the last time. I really hope I can follow her example.

You’ve hit the nail exactly on the head -nothing you ever do is allegedly good enough so why worry about it! You can’t please the unreasonable and self absorbed

She sounds like a dream. This is how it should be more often.

My DM nearly drove me into the ground after my DF passed away. For 2 years I was at her beck and call as I felt so guilty she was on her own and she was seemingly so helpless without my DF. I eventually realised that I couldn't carry on and I was wrecking my life for no reason. My DM was helpless because she'd never bothered learning life skills when she was younger and relied on my DF for far too much. I managed to take a big step back and get home carers to visit her for an hour a day. I still do a lot but its more like 5 hours a week now instead of 15-20 hours and its on my terms. She knows I will visit every weekend and I will take her to all her appointments. Beyond this, she has chosen to live alone and refused to move somewhere smaller or more accessible, so she has to deal with the consequences. It was the only option to protect my sanity.

🎉🎉🎉 Now block the carehome number 😉

I feel this. My extremely frail, very disabled MIL's version of this is "when I am better". She doesn't want grab rails or adaptation or anything that would help make her safer and more mobile at home as she won't need them "when I'm better" and will have been a waste of money and it will make the house harder to sell "when I'm better". You're not getting better. Your condition is degenerative. Please accept the help. Makes me want to scream every time she says it.

One of the effects of Parkinson’s is extreme stubbornness so that might well be a contributing factor here. OP. But yes, it is very difficult to deal with someone who will not implement change to help themselves and seems to have no thought at all for what their behaviour is doing to their family.

What does she say when you challenge her directly? ‘You’ve been at that stage for months, mum.’

In my relative’s case, the grab rails were accepted eventually, as was the walker and the wheelchair after some near falls. Your DM seems to have a very extreme case of this if she’s had bad falls which have not changed her attitude.

They can also get funny of you have an illness and you are dealing with it differently / accepting it I find. Plus they can be cross that you are hot helping them due to the illness.

I have found this with elderly MIL. She scoffs at how I am dealing with it as if I am 'giving in' to it (I'm not just managing it as the doctors have advised) and refuses herself to take medications for e.g. blood pressure and the like.

It has caused quite a rift to be honest. I stay away from the topic now and just let her do her own thing. I think she is perhaps jealous as I have the support of DH - not sure. She will insinuate that I need to get better and it has been going on too long.

Prior to this I was helping her more after her husband died but I have stepped back and instead of any concern for how I am feeling it is all about how will she manage without my support, despite having the ability to go out and join support groups or meet others (doesn't want to) and then loaning about being lonely etc.

I was really kind and helpful to her after DH's father died, listening and reassuring but I have realised that that is all one way and she is not caring towards me at all when I need support. It is not reciprocal; Having space and boundaries can really help.

If I challenge her directly she does one of these things:

Acts as though I don’t exist, and as though I am not physically stood in front of her, and as though the words did not happen, and carries on with whatever she is doing as though I am not there.

Or goes directly up against me by looking me straight in the eye and denying actual reality and crisis events that have happened.

Or takes a pause, then immediately changes the subject, by saying something like, ‘Anyway, let’s not focus on that right now, can you help me with this flower pot in the garden. Do you think I should add some petunias to it?’

Sometimes when I’ve asked her why she is repeatedly doing something that is causing me great stress, for example, I’ll say, “When you turned up unannounced during my work hoursand banged on my window, I was pitching to a company I’ve been working on for months. You made it impossible for me to concentrate and I lost my train of thought. As a result I lost the pitch which would have been worth £50,000 to our charity. This means that hundreds of disadvantaged children are now going to miss out on life changing services. You really need to stop doing this mum. It makes me so unhappy and feel so hopeless and frustrated because this is the serious impact of what you keep doing. When you set off to come to my house today, did you not think, well I’ve been asked not to do this? So why do you KEEP doing this to me?”

And her reply was (and often was) “Well
I wanted to and I’m here now so I’ll just stay for half an hour.”

Just literally does not care.

😵‍💫

Honestly look a the Out of the Fog site op sounds like she might have some kind of personality disorder and is manipulative.

Here is some advice on how to deal

https://outofthefog.website/toolbox-intro

She agreed to grab rails after about 5 years but they were too late to keep her in her own home. That is what she wanted ultimately.

I tried so hard to make her see that if she allowed me to set up a solid carer system for her at home, she’d have a much better chance of staying at home for longer.

She very reluctantly agreed to some things like raised toilet seat and grab rails eventually, but it would taken several years for each thing to be introduced, and it was always too late to be of any real help.

I always wonder if she’d let me organise carers in her house three times a day, would she have declined and struggled at the rate she did.

It was as though she was addicted to saying no. She never once herself initiated anything herself to help herself. Everything was done immediately after a huge crisis that involved police, ambulance, hospital, medical emergency.

Oh OP, it sounds like you have a more extreme version of my circs, but the "Anyway... about the garden" raised a wry smile here. Maybe there's something to be learned from it when the demands are coming from our EPs.

When my DH mentions anything to do with grab rails, bathroom modifications, stair lift etc he’s met with a very vague ‘well it’s something to think about’ from both his parents.
This same conversation has been going on for a few of years now and they point blank refuse to accept that these things would make life easier.
They happily chomp on all the ‘preventative meds’ prescribed to keep them alive but fail to see that a fall will seriously impact them and I feel it’s not far away now.

I am going to be harsh here. Stop what you are doing. It’s not working. You are describing in great detail what you said,what she said, how she looked etc.

You are going into far too much detail here with your DM. She literally doesn’t care. Isn’t interested in your view whatsoever. Whether that is the illness or something else you will probably know.

If there is an important presentation then you either go to the office or a friends house. Has she capacity? Have you spoken to GP, Age UK.

This could go on for years. You honestly need a better plan. I used to turn off my phone at 2230 every night. Care homes, hospitals your elderly parent will call you day and night. Care homes/sheltered accommodation want to tick the box but they will do what needs to be done ie calling an ambulance.

I was told after Mum died by the care home that I was easy to deal with and clearly had boundaries I kept to. The Manager said some daughters run themselves ragged getting more and
more ill themselves. Care homes will make the decision they need to with or without you being there.

I've had similar convos with my dad over protecting my health/time....his response is either: 'no its not' or 'oh yeaaaah' with very sarcastic tone, or 'can you just... (insert outrageous request)?

My empathy...

I think we never realise how much we are changing as we age.

Very well done! I don’t know what happens to elderly parents but they often become a real burden to their children. My Mum did allow me to do her life admin. I had control over all her accounts. She didn’t do online anything and actually that was a blessing. As I said previously I turned off my phone to Do
not Disturb. Kids knew to call three times to get through DND but care home didn’t and there were a couple of times when she fell, had a UTI, fell from a hospital bed whilst trying to get to the toilet (its always the toilet isn’t it) and I missed the call but the next morning I would get more involved.

I do know the guilt though that grabs at you. Fight it!

You can set up Do Not Disturb so that only certain calls can get through. It’s Favourites or VIP I think?

Mine is set up so that DH, my children’s school and wraparound care, my own dentist/GP and my work can call me. Everything else, including all calls relating to elderly parents, doesn’t get through during work/commuting hours.

You are totally right and I have stopped. I don’t enter in to detail any longer and haven’t for quite a long time. It does take time to realise that nothing you say will change it. But I’m definitely there now.

I would close the curtains, double lock the doors from the inside and use noise cancelling headphones to avoid distractions -work at the back of the house if possible. Or rent an office space elsewhere for a couple of hours that she isn’t aware of. You shouldn’t have to do these things and you’ve explained the issues to your mum but she seems hellbent on ignoring you and just doing what she wants to do

Yes, I was going to suggest the same. Her behaviour when you were working was outrageous. The only way to protect yourself from that is to take the work elsewhere so that she actually cannot find and interrupt you. That was truly appalling.

I now have my phone on Sleep/DND from 5pm until im finished with school run, and until 10am on weekends. I've added exceptions so that my husband, son and close friends can call, but turned off the allow those who call multiple times option, just in case hospital or carehome are persistent. 🙈

So this isnt always as easy as it sounds and can take some outside the box thinking and i often have to remind myself of it. But it's worth just being aware of it.

Boundaries are a tool for you to be in control of protecting yourself, not a tool to control others and how they treat you.

If someone is overstepping your boundary, to protect that boundary you need to take action to ensure that they CAN'T overstep it going forward.

This came up when I was on a course provided by a local carers group. The light bulb went on. It isn't always easy but helps to rethink how best to handle certain situations, organisations or people.