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?

My inlaws planned amazingly well, but it never struck me at the time how carefully they had thought things out.
They'd run their own small business and lived on the premises. As soon as they retired they moved about a mile to a small bungalow in a quiet cul- de-sac. 10 minutes flat walk to the local shops, 5 minutes more to a lovely park, bus stop about 100 yards from their house, easy garden etc. Eventually they had to have a cleaner, gardener, then carers - the survivor had to go into a care home in the end as she got too doddery. She was 97 - lived to 101. Selling their house paid the fees.
However we did have to take over MIL's admin (FIL had always done it), and sorting out (or doing) repairs.

I had this with my 96 year old Aunt. Both my parents are gone so down to me but she insisted on no outside help , I had to go in and do things for her until she became too ill and unable to walk, even then I would go round and find her crawling around on hands and knees polishing! In the end I had to get her into a good care home , she was only there 2 weeks then died in her sleep bless her . She did have social services send carers in for a bit but they were absolutely useless and where she was so independent she’d say she didn’t want them so they would leave without even washing her as she said she’d washed herself . I really feel for you , try and get help now before it is too late. They get worse with the stubbornness as they get older

I think is a warning bell to any and all in a similar position. Do not put up with it. Drop the rope. Have a crystal clear trail of all the things you tried to implement, get social services involved and then leave them to it. Drop by once a week for a chat and report anything else that you see. Get them an alarm they can push if they need an ambulance, don't answer the phone at all after a certain time.

That means they might fall and break their neck, but you cannot be a constant caregiver to an elderly person who refuses to do anything to help themselves without it ruining your life and the life of your family.

And if you implement this early enough in the game they are playing with your life, there's a lot less chance of any real damage being done.

Being old is no excuse for being utterly self centred. They're allowed to do as they please. And so are you.

It takes courage to stop your own mother/parents from bullying and abusing you, but you do have to do it if you don't want to end up like the OP, filled with (completely fair and justified) rage and lamenting all the utterly pointless, wasted hours of pandering to a selfish, silly old woman.

You have my sympathy. We have just been dealing with my mother in law not accepting how much help she would need to help care for her husband. She at 91 announcing she knows what shes doing, trotting out the phrase..I used to be a nurse..indeed she did but it's been 60 years..shes alot older and has her own health issues..que my poor sister inlaw flying urgently to Ireland to sort out extra care for dad when it was clear it was all going wrong. It didnt need to be like that and we could all see it.
Quite maddening.

One of the most ridiculous arguments I had with my mother resulting in a I’m not at that stage yet’ combat, was linked to her Christmas tree.

When she insisted at 72 years of age in moving to a house with dangerously steeo
stairs, she was already widowed and 5 years in to her Parkinson’s diagnosis. I organised the entire sale, purchase and move for her, and it nearly finished me off. I had a baby, a toddler, a dog, and a husband who worked away 6 months of the year. On move day, she made me climb the rickety attic ladder to store her massive artificial Christmas tree in the attic - which was badly boarded and not safe at all. She manipulated and pushed and blackmailed me. I asked her to store it in a large bedroom walk in closet instead for easy access. She point blank refused. Like she refused a million other things.

Year one, she called me about five times at work telling me I needed to make sure I’d been to her house before Dec 1st to get the bloody tree out of the attic. I was snowed under at work, and with two young children, we all know how December is frantic with Christmas based activities and requests.

I explained all this to her. She wouldn’t back down. I even said I’d buy her a real tree each year when I bought mine, and take that to her house for her. I was also scared of the attic ladder and state of the attic flooring myself, and have a serious lower back issue. She didn’t care and continued to say things like, ‘It’s such a small thing I’m asking of you’.

I rushed over one night after work and dragged the tree down from the attic.

4 weeks later, I got the same pressure in reverse. Up the stupid attic I went again, almost breaking my back in a bid to wrangle the huge, unwieldy box up her attic ladders.

This went on for another two years due to her continued refusal to accept any other solution.

When I said that she should not be storing anything in the attic anymore and she had plenty of other storage space in the house (which she absolutely had), she pushed back, true to form. My husband tried to reason with her saying even he didn’t think it was safe for someone with her condition to be going up the attic ladders and he didn’t want me his wife to either, because we could hurt ourselves. She said, “Don’t be silly. Of course I can go up the attic. I’m not at the stage yet where I can’t climb a ladder.”

She’s been like this her entire life. Way before the illness and disease set in. It’s her way or the high way.

The first year I refused to go up the attic for the tree she told everyone how awful I was.

She can tell anyone she likes how awful you are . People know the truth .

I have to say I am guilty of saying that. I am not elderly but I am disabled and when you've been independent its really hardly give that up and admit that you need help. I have a carer come in once a day to make me lunch but I am very resistant to any other kind of help. Its not easy to accept you need help whether you are elderly or disabled. Try to be a bit understanding of that. I get that you are frustrated but think what this is like for her. No one likes to give up their independence.

I've said I'm going to get a funeral wreath in the shape of an Oscar for my gran because she faked so many falls!!

@user555999000 I hear the same phrase from my Dad when I try to talk to him about getting a mobility scooter. His mobility is terrible-he can manage with sticks at home but going out with his rollator is very challenging and borderline dangerous. Many of his friends have scooters but he’s “not at that stage yet!”

I know that it’s frustrating for him to admit that he needs a scooter but it would make his life so much easier, safer, and reduce his pain.

@ToadRage
I agree with what you say there. I’m not disabled but at 61 I find myself less inclined towards/ capable at DIY etc, when I used to be quite handy and active. I seem to instead just tell myself I don’t care about the decor and thereby convince myself I don’t need to get someone in to do jobs

My husband is like this trying to be 50 at 75. Pushing himself on instead of taking a nap after lunch. Crawling into bed early every night.

I've needed a cleaner because of two hip replacements and I'm hanging onto her. We now have handrails back and front. New steps.

My advice plan ahead and do the jobs before they need doing.

We’re in a similar situation. Parents in law 90 & 91. Failing memory and housebound 150 miles away. Plenty of money to pay for help but totally refuse as they ‘can’t afford it’ and ‘don’t want people in the house’. We help as much as we can organising shopping deliveries and prescriptions, but struggle to visit due to my husband’s current health. It’s very frustrating but we won’t be guilted into doing things to support that we struggle with.
they have made zero practical provision for their old age, and it’s their decision not to pay for help that that can comfortably afford.

Get someone in. You're only 61.

I have been understanding for a decade. I have put my life on hold for a decade. I have put her wants before my own for a decade. I have spent days, weeks, months, years, thinking about how she feels. She is of the lucky generation that got to work part time, buy a house for next to nothing and retire early. She did no caring herself. I will still have a huge mortgage by the same time she had been retired for several years and was living a lovely , holiday filled existence. It is highly likely that I will have to work full
time until age 67. It is not unreasonable to consider that I could go from breakdown caring for her, to zero retirement, and into serious bad health myself. At what point does the life and needs of the carer get considered? I also basically raised myself from about age 12/13 years of age - as was fairly typical of many Gen X.

@justasking111 yep I'm trying to convince my dad to get a new central heating system installed. Current one was done in 1982. He won't get it replaced as it's too expensive 😔 he will not help himself which is why I've backed off now. Sending hugs x

I understand your anger.

I think people confuse two very different things.

There are lots of people to whom infirmity comes as a huge, destabilising shock that really attacks their sense of identity. And it's absolutely natural to have some level of denial about it, and/or to want to fight against it happening as hard as possible. They can be stubborn as heck, and it can be hugely frustrating, but in general, you can understand why they feel this way and how much the fear and hurt of it happening is shaping the way they are responding.

But then there are also people who are, frankly, narcissistic about it. They genuinely believe that they are so special and important that this experience is totally different for them, and they are entitled to make that clear to everyone around them. That's your mum smiling when she uses that phrase. That's her exhausting you to the point where you feel so angry.

I nursed my grandmother, who was in the first category. It was extremely hard work, and she was bloody stubborn, but overall, I didn't feel furious with her because it was so obvious that it was all rooted in her feeling frightened and hurt.

My mum (though she's still pretty able) is in the second group. Every single, tiny, predictable, age-appropriate issue she has is magnified into an appalling catastrophe that has wounded her deeply and requires enormous sympathy - but absolutely no solutions or accommodation. On numerous occasions she has burst into tears in public places because she is so horrendously upset that she gets more tired than she used to - but she won't, for example, lie down for a nap or go to bed earlier. She will come up with endless tearful complaints about how her GP operates, but won't lift a finger to get actual help, because it's a point of principle that the GP ought to be doing things differently, and special, just for her. And so on and so on.

It's different, and it is infuriating.

You have every right to be angry OP, I’d be furious.

She is of the lucky generation that got to work part time, buy a house for next to nothing and retire early. She did no caring herself. I will still have a huge mortgage by the same time she had been retired for several years and was living a lovely , holiday filled existence.

I think this is a key point, actually. Not true of everyone in that generation of course; lots of people are wonderful and not everyone had an easy ride ... but I do recognise your description. I think if you've lived your life having things handed to you, you probably do feel rage about ordinary aging. OTOH the generation before were more accustomed to thinking about compromise and expecting to be told 'tough luck,' and so too is the generation below.

But your case is completely different to the OP’s. The OP’s mum spent a decade demanding the OP’s help at the risk of the OP’s health and financial security-she knew she wasn’t independent and had accepted that, but just wanted the OP to plug the gap.

And dare I say, life expectancy is much higher now than it was two generations ago, so people who are elderly now were a lot less likely to be spending a decade caring for their parents. So they cannot understand the pressures and stress.

I haven’t mentioned this in my previous post but we also care for my MIL who also has Alzheimer’s. She made our life hell too for the last ten years with unreasonable demands and expectations. She alao
ended up in a care home last year. We run her life too. Husband is an only child. So we have two parents who we care for with zero help from anyone else in the family. Who were at best, average mothers. One who retired at age 50 after working very part time her entire life. And one who retired at age 58. Neither helped with our children when they were babies. Both watched us drown without help. And now we are expected to sacrifice decades of our lives for them both? Modern medicine is determined to push them on to their late 80s and 90s. So at what stage does my life begin again?

I do think that this is a stage of life that is not really talked about enough. IME many people in their 50s or older say things like “oh no, shoot me! Send me off on the ice floe!” etc, and that’s not really facing up to the fact that there will be life changes and help needed, even when they have been through this with their own relatives. (My mum did offer to provide me with an advance directive saying I could get rid of any rugs or furniture that were trip hazards). I think we don’t have the same options that they have in other countries. “Retirement flats” here are often a complete rip off, difficult to resell and so on. The stage before care home can’t be picked up by social services now - and a lot of people would not need that input if they had more “hotel” type services of cleaning and so on - and had planned to pay for it. It needs thinking about.

Oh @user555999000 It’s so hard and impossibly unfair.
I think your point about not wanting to accept dependence on services but happy to be wholly dependent on you is the crux
It’s hurtful , shocking and bit confusing that someone - can just ignore the impact they are having on others. Your suffering / life quality is an easy sacrifice for ‘keeping up appearances/ their own ego’

And the previous poster was right about ‘boiled frog’ analogy - it’s just one thing after another. It’s very hard to have boundaries when you know if you don’t cook they won’t eat, etc
I know I sacrificed my work, my weens childhood even cause I caring for relative.

You are doing so well. One day at a time

And anyone who knows brain disease well, will know that if you have two mothers, who objectively lived life on their terms only and never went out of their way for others, both get dementia, then neither of them has the capacity to give a hoot about the demands that the other mother is placing on us. If I was to say to mother during a 2 am phone call, when she’s called me for the third time, ‘oh hi mum sorry but I’ve already taken two calls from MIL tonight and we are in A&E with her so I can’t come to scrape you up off the floor’ she would not reduce her hysteria or needs or demands at all. This was one reason I used to beg her to get carers in. She refused. One evening my youngest child ended up in A&E and was seriously ill. I had the paramedics calling me on my phone at midnight to tell me they were on their way to the SAME hospital with my mother in an ambulance. It was one of the worst nights of my life. I could not go to my mother and leave my child. Imagine that moral dilemma. Was my mother able to dial down her requests to me after that. No. I was expected to go a whole week with zero sleep and constant trauma, coordinating care and hospital discharge plans for people whilst trying not to lose my job. People have no idea the pressure on the sandwich generation.

But it’s fine. Because we are not at that stage yet.

I feel you. Sandwich generation it is. I'm gen x and I assume you are too. We sure got the rough end of the stick. My parents refused to stay in the nursing home that we had sorted with a huge amount of work ( the bureaucracy sure doesn't make it easy). Refused to have a lift installed, even though both could barely walk and they had steep stairs. You do get resentful. Throw in a problem DC or even a non-problem DC and you are stuffed. I hope you get it sorted. I ended up stepping away except for once a week when they come to mine for lunch or I take them out for lunch.
They both have dementia so it's not something I look forward to ; which feels terrible but its the truth. I understand.