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?

Because the older you get the less you like change.
And accepting help means admitting you need it and you are now on a downward slope.
My DPs needed a crisis to start allowing help but each new step is a negotiation and takes time to drip feed the idea, then 'trial' before they accept/admit it is helpful.

My mil told my BIL (a medic) that he was overreacting to her risk of falls. This while she was sporting a broken ankle from falling. A year later she was in a nursing home because of the subsequent falls.

I hope to god I am more accepting of my stage of life when the time comes. My own husband would say the response to "I'm not at that stage yet" is to say "great" and leave them at it - to fall, to end up in hospital etc. That doesn't work though because someone ends up in the AandE all night with them and someone has to manage the transfer to nursing home etc. It is absolutely infuriating and I think all you can do is make sure you don't do the same yourself.

I have met older people (my mil's mother ironically enough was one of them) who completely accept the next stage and live with it gracefully and don't spend their time insisting on living their day to day lives as if they were mid 40s and in great health instead of mid 80s with balance issues and bad knees.

Not to the extent you did, but my dad would also make blatantly ridiculous statements such as how he could sprint up the stairs at a point where he was struggling to manage them at all. They lose any sense of realistic assessment of their own abilities. I guess because it's so frightening and disempowering to admit you can't do something. But I also think they just don't actually see themselves as they are. My dad once referred to 'very elderly people' in a way that made it clear he didn't think he was one of them. He was almost ninety.

You seem really angry about it. I think it's understandable that somebody wouldn't want to accept their increasing dependency.

My mom repeatedly refused to accept external care to help with my severely demented father, despite being in her 80s and frail herself. This put a tremendous burden on herself and others (me in particular). She finally accepted care visits only in the last couple of weeks of his life, when he was fully bed-bound and actively dying.

It doesn't occur to me to be angry with her about this, really. I think it's quite easy to empathise with somebody struggling to accept that they need additional support.

I don't know, maybe it's me that's weird in thinking it's understandable? Friends and family and my partner did seem to get more annoyed with her about it, when I told them, than I was.....

I’m in a similar situation with my Mum. It’s not anger so much, more frustration. I’m determined not to be the same with my own kids if I reach very old age!

This rings so many bells for me unfortunately!! I wish I could suggest something to help but I feel exactly the same way!

“You seem really angry about it. I think it's understandable that somebody wouldn't want to accept their increasing dependency.”

Yes I’m really angry you are right. Because the impact of her refusal to accept any help, completely ruined and broke my life, my career, the ability to pay my mortgage and provide for my children, and destroyed my mental health. And there were things that happened, directly because of her decisions, that I now have PTSD from.

My mother used to say ‘I’ll cross that bridge when I come to it’ and then then refuse to discuss it any further. I used to want to shout ‘We’re in the river, drowning!’

It's ok to be angry. Have you spoken about your feelings with someone external?

I'm less angry now my elderly person is safely ensconced in residential care and I'm only sorting out the financial and possession chaos none of which actually threatens their health. And to be fair since they've been in there they have been more mindful of the burden I have carried for them. I actually think the amount relatives do gets talked about by either the care staff or other residents.

I'm quite blunt so I do call out actions that cause more chaos/work. Most recent is not telling me their watch was broken when it happened so I only found out when visiting (I live 400 miles away). As a result I've had to buy one mail order and try to get the carers to set it up (I got a talking one that sets the time automatically which will be easier in the long run, but of course the set up is complicated). I was there last weekend and if I'd been able to do the set up myself it would have been SO much easier.

@user555999000 I started a similar thread a few years ago

You have my full sympathy
It is infuriating and spoils the relationship

I'm not sure I really have one to be honest. I just pay lip service to it.

She's still here and we're still suffering 🤷🏻‍♀️

It's absolutely fine if they're prepared to take the consequences of their own action

like if you could say and it be accepted...
Don't phone me when there's a fucking emergency. Don't even tell me whether there's a fucking emergency.

(I am so sick of the fucking emergencies)

Anyway, yours is in a care home now? That should help.

I'm really sorry you have PTSD.

I was actually just thinking today that I probably have a few things that people would count as PTSD, but I'm not sure what counts these days

An elderly parent will absolutely give you PTSD. It's terrible. The apocalypse would be better.

I wish you all the best I really do

Maybe we should form a collective circle and pray really hard or something

I'm not a believer, but desperate times and all that.

I’m determined to not behave like my parents. They lived at the top of a hill and my mum didn’t drive. Their garden was steep and I said they should put a handrail in. Five years later
and still no handrail and they couldn’t walk up the garden. They should have moved house years before but didn’t think they needed to do so and when they really couldn’t manage they couldn’t face the thought of a house move. I’m early 60s and determined to move long before I actually need to.

I understand why you're angry @user555999000

Unless you've been there you cannot understand how 'I'm not at that stage yet' translates into a parent's independence being entirely dependent on their adult child. It is all consuming. One of the very worst things is that when you are in it you have no idea how long it can go on.

I'm so sorry you have been through this. It is hard. I wish you peace and some comfort.

My mum can’t manage the stairs very well at all but steadfastly refuses to move to a bungalow/apartment and is completely opposed to the idea of a stairlift. (‘they’re for old people’).
In truth, it probably is too late for her and my Dad to move house even though we’ve said we’ll manage it all for them. It’ll take a crisis for anything to change.
Like you, we’ll be downsizing and moving into something on one level long before we need to.

Also what I think is weird is the idea that they refuse help because they ‘wouldn’t want to accept their increasing dependency’

How can this be true though? My mother had zero problem accepting her total dependency on me. She didn’t, and still doesn’t lose, a wink of sleep over it. Quite happy with it from her sixties

What has also been perplexing to me is this idea that allowing external help or accepting aids, or walkers, or adapted chairs, or whatever it is, makes them ‘look’ elderly. Or ‘appear dependent’. As though that makes them ‘seem’ more elderly than any number of alternative awful things I saw such as:

crawling on their hands and knees to the bathroom in the dark, rather than take an extra tablet to ensure mobility through the night

or clinging on to furniture and falling and being covered in blood, rather than use a walking stick

or urinating on the bedroom carpets rather than agree to a commode next to the bed

or getting stuck half way up a steep staircase at midnight and have to call the police, rather than agree to sleeping downstairs

or buy a house with steep stairs even though you already have a mobility disease, because you don’t like one level living, then the paramedics couldn’t get you down the stairs, after your daughter spent 16 hours on the floor with you sobbing waiting for an ambulance

All of these scenarios seem far more ‘dependent’ than a walking stick, grab rails and a bungalow do to me. My grandparents were the total opposite to my mum. They bought a bungalow in their sixties and when the stage came that they needed something to make their lives easier in older age - they just did it. I never saw them as old or dependent. I saw them as grandad walking around with his stick. My mother, however, has made me think she’s ancient well before she actually was because she was so obsessed with keeping up
appearances. The irony being that those appearances (crawling around on the floor rather than use a stick) to me, seemed much worse and made her seem much more elderly, than the optics and aids she was trying to stay away from.

A variation on the “not being at that stage yet” is the reluctant agreeing to something I would have proposed months before, so with great fanfare they agreed to up the cleaners hours from 2-3 ( big whoop) so she could help unpack groceries and try and throw out the past dated stuff. Except by this stage what they actually needed was 3-4 daily hour long care visits to sort out cooking and making sure they ate correctly, rather than the free Scottish 10 minute visits that seemed to be solely for toileting.

Its infuriating and I am pretty sure their intransigence meant they ended up in a care home sooner than they might have done. I am very sure that the stress and demands as an only DC an hour away resulted in my not applying or getting a well paid professional role after my contract finished, plus some mental health issues that are apparently par for the course with EPs.

Losing independence is really, really tough. People end up in denial or feeling embarrassed. The older generation come from a time when families helped each other out more and external help wasn't as common. Someone with cognitive decline could genuinely not recognise the risks or their own decline. It's really tough for the family supporting them, but I'd say it is just as tough, if not more so, for the person losing their independence and dignity and being aware that the end of their life is approaching. I'd personally much rather be the carer than the one needing care.

I’m have thank you. I’ve had a lot of therapy and a lot of counselling. But the relentlessness of a decade of caring with very little recognition or thanks, and knowing it could go on for easily another decade, it’s just too much to bear at the moment. I’m completely done in. I had to put my beloved dog to sleep last month and I’m so heartbroken I didn’t get to focus on him that much in the last year because, as always, ‘I’m not at that stage yet’ consequences were consuming my life. And fuck me - the grief is making me so angry.

Thank you. That’s really kind. It’s a relief to feel
someone else understands how I feel.

I have a similar situation with my 81 year old dad. He's still carrying on as if he is 50. Out doing things every single day, then complains he's knackered. Won't accept any help or pay for it himself. Despite having enough money to do so.... I've totally pulled back now. I speak to him every week but unless he ends up in hospital again I won't be in a rush to see him (we live 150 miles apart). Am I wrong?? All I know is we drive each other mad when we are together 😬

@user555999000 not sure if you saw My earlier post

We're angry because we feel we wasted a lot of time.

I do think some personalities are worse than others for accepting aging. I’m in my fifties and am embracing the grey hairs coming through. As is my sister. My mother is appalled at us, and keeps suggesting I dye mine bright blonde. Her disgust is really evident. That I am willingly allowing myself to show my age through grey hairs, when I could hide it by dying it blonde.

One of the reasons I won’t put chemicals anywhere near my head, is a direct result of the trauma I’ve been exposed to through her Parkinson’s disease. I’m so traumatised by some of the crisis situations I’ve been forced into, some really terrible medical situations with her, that I’ll do anything to lower the chances of getting brain disease. She’s still insisting on dying her own hair with paint on harsh chemicals every single month. It now looks quite silly on someone her age - but on we go. It’s hard to watch. I know her brain is beyond saving now but it’s still painful to watch knowing the damage chemicals do to brain health.

This is classic ‘boiled frog’. As a carer, the water has become hotter and hotter around you and you reached breaking point. It happened to me and it’s only in hindsight that I realised I should have prioritised myself more. I suspect you’re not looking for advice, only to vent. Do whatever you need to to get into a better place and don’t feel guilty about it. Sometimes you have to let a situation fail in order for it to change.

You seem really angry about it

Yes, and so she should!

She's sacrificed her own health for someone who is ungrateful and unrealistic.

No wonder she's angry!

I heard that in my mums voice, “I’m not there yet” it makes me angry too

A lot of people will understand. I had caring responsibilities for an elderly uncle. Maybe the fact that he wasn't my father made it easier or maybe my tough love personality but I felt I could say that if he didn't accept certain help that I wouldn't be always be on call or willing to pick up the pieces when accidents happened. He fell badly in the shower once despite me asking him to wait until a carer was in the house to supervise . Ended up taking him to A&E and he had a long rehab back from breaking his leg . He was very penitent then and I pointed out the extra work he created for me and the pain he put himself through .
This is the first generation that are living longer with lower quality of life I think. And where being in a nursing home was a terrible thing. The next generation I hope will be more realistic and more open to the idea and of course the quality has improved. I know my kids won't want to experience what they have seen me go through and I wouldn't burden them either.