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?

I think that old age is a bit like being a parent - we all look at how others do it, work through resentments and trauma from our own parents' attempts at it, and make promises to ourselves about how we will and won't go about it. But just like nothing really prepares you for actually being a parent and how impossible it will all feel at times, I'm not sure we can really understand what it feels like to be in that downward slope of old age. We're all wise parents before we have actually kids and we're all gracious about our descent into old age before we actually get old.

Does that invalidate or excuse all the hurt and anger your mom's actions have caused? Absolutely not. Just like we don't have to pretend that our parents' human imperfections didn't harm us when we were children you don't have to pretend that now.

Our ‘not at that stage yet’ stories are MIL with failed knee replacement (because she refused to do the exercises) who refuses to use a walking stick - not even to walk round her flat garden. So basically housebound and clings on to her (doormat) husband when she walks from house to car.

Then my parents - mother who refuses to accept help (people in the house. She’s a long term hoarder, but I’m pretty sure she is ND too but I love her dearly) and father who keeps falling due to knee replacement that he refused and help or rehab for (you’d think he’d take it for mums sake as much as anything) and so falls at least once a week, and recently when out on his own as it was getting dark. I’m fairly certain he is in marked cognitive decline so I guess it’s a matter of time before he ends up in a&e or hurts someone else through his actions. Unfortunately I can’t feel any sympathy for him as I can’t stand him but it’s really hard to watch my mum deal with all this. She won’t leave now though. It’s like they are both clinging on to a piece of co dependency wood in the ocean.

Agree, it's like with a young child. They don't know, and they're not responsible, or trying to upset you.
Also, it must be frustrating when someone says if you're age X you can't do this. Some people are extremely fit, still dancing and teaching aerobics in their 70s, some teenagers can't do this. The thing about stopping older drivers-when we know the most dangerous are under 25.
I try to do whatever older relatives need, bearing in mind that they're all individuals. Some people are fiercely independent at any age, and worry about being a burden. Some are happy to be waited on.

But it’s nothing to do with age. It’s to do with symptoms .

I never said to my mum during Christmas Tree gate (not sure if you’ve read the whole thread?) , ‘please don’t go up the attic ladder because you are 75.’

I said, ‘You have regular episodes of sudden and complete paralysis that impacts your balance. I can’t come to save you if you fall off the ladder when this happens.’ I don’t care what age she is.

I avoid driving at night now because I have a real issue now I’m 50, with lights and vestibular migraines. So I don’t do it. Because I think it’s better that I think of the impact on my children if I hit a wall head on and the potential injury to another driver, than the convenience to me.

Many do know and they are responsible. As evidenced by the countless mental capacity assessment meetings I’ve been in. ‘We have assessed your mother and we deem her to have capacity to make this decision. She has the ability to understand the consequences and even though she may decide to make a bad decision soon., she has the right to do so because she understands the consequences.’ Which she promptly did by checking out of the care home late one evening in secret, and got two connecting buses somewhere, and then called me late at night wanting me to take her back after she’d finished her jaunt. Holy shit I’d had half the county calling me telling me to try to find her. The stress.

On the one hand you are saying she is like a toddler and so can’t be responsible. But you are also saying that you’d be annoyed if someone told you you can’t do something due to age. I don’t think people do this at all. I think people see an old person mow down a pedestrian and rightly so, at that point in time, deduce that age related symptoms probably contributed to it, which they often do, so it would be a good idea for people over a certain age to have their driving checked, for example. Which it is.

Years ago, my mum thought it was funny that my grandad was driving around crashing into people’s garden gates etc. I was horrified.

Sidebar: she never had any intention of going up the ladder. She just pretended that she would, knowing that I would be so terrified she’d get injured, so I’d give in and go up myself. She had every intention of persuading me, despite me having a very injured back.

It can be understandable... BUT when it has masdive consequences for others...often daughters /wives...

I cant just smile and 'get on with it' although i do sometimes repear it as a funny story...

In last few weeks.
Multiple ED visits as elderly parent refuses to use frame-the last one i got in at 4am.. Refuses to do requisite exercises...
Chokes regularly as refuses to eat upright..
Despite numerous prompts...

Expects me to pick him up when falling.. I've got significant damage tp my neck back and shoulders
...

Damn right I'm furious 😂😱😱

But your dh is right … and remember facts are facts… ‘ you had 3 falls , you will fall again ‘ and she did .. ( luckily found straight away ) and a week later she died.
Don’t feel guilty
Don't panda
Tell them kindly , but straight.
If they don’t excerpt it, that’s on them.
Then firm boundaries and crack on with your own life.
I could go on ….. just don’t be a saviour / Martor.

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

But surely your mother made her choices and you made yours to facilitate them? Couldn't you just have refused to cooperate and prioritise your children?

I've no experience of this yet but I find these threads chilling. My mum died young and my dad died suddenly. DH's parents are hale and hearty in their 80s but when things change we won't endure what you have. There'll be paid help or none other than social visits. I'm bringing DD up to do the same when/if we lose independence. Sometimes love means walking away rather than sacrificing yourself.

I really feel for you, and know how infuriating it can be ‘Oh just give me something to die - I’d rather do that than…..’ Is the phrase DM uses to deflect any suggestion of help that may make her safer/ happier/ our life any easier. She is fed up, and I know she is in pain and her memory is appalling but 🙄🙄🙄

@BeaBachinasec
Exactly.
You cannot reward bad behaviour

It’s like children really
There has to be rules and consequences, or you end up burnout and unable to help anyone.
You have to put your oxygen mask on first.

@BeaBachinasec and this is exactly what I would have said until I found myself in the position of having two extremely elderly DPs, both with dementia symptoms ( different types though) and both utterly unwilling to get the necessary help in and ( in my case) totally unable to see the horrible impact it has had on me. It’s insidious and unless you’ve actually been through it, impossible to understand how it creeps up and takes over your life, even if you think you’re someone who thinks they have fairly strong boundaries.

Thankfully - by dint of my amazing DH who DF listens to not me - they are now in a care home close to us, but at points on the journey I was thinking about suicide as it seemed like the only way to end my misery.

Ironically when DM was my age they moved UK country away from her elderly DPs and she got a fabulous new high paying career. I have been reduced to part time admin work because of the emotional and physical demands of the last year - don’t get me wrong I am grateful to be working again and I enjoy the low stress role, but it wouldn’t have been my first choice.

Logically of course, yes we can refuse, walk away etc. And many children do. But in reality, when you have a relationship with someone, care for them and love them, and/or feel obligation and guilt, we find ourselves here.

I think now is when it stops, you pull back, you tell SS you can't and won't do whatever it is needs doing . Visit if you want to, or not but ho live your life now while you still can

Exactly this. The anger is completely justified.

The stubbornness to accept even small home adjustments such as grab rails or a walker leads to completely preventable injuries that involve a huge burden on younger relatives who often already have kids to care for and full time jobs. Thats not even including the emotional stress and pressure and guilt it causes other people. Its selfish AF no matter what the motivation.

If I kept insisting on climbing up a mountain and then getting into trouble and then requesting rescuers to come and rescue me, putting their own lives at risk and I did this week in, week out, relentlessly, noone would deny it wasnt bloody selfish behaviour. This is no different.

This is my parents. Both late 80's. Refuse any help as "they aren't at that stage yet" Both incredibly frail, mum especially. When she has had falls and ends up in hospital, carers are arranged despite them both saying it's not needed, dad will look after her.
Carers come for a day or so, mum and dad then refuse them any longer!

They have a cleaner that comes in once a week for an hour. This is a friend, so most of the time is sat drinking coffee as parents say don't bother doing anything this week --- and then pay her! The bathroom especially is filthy and I end up cleaning it when I go.

I have had many conversations about care needs and extra help and it all falls on deaf ears. They put no plans in place for aging despite mum's many health conditions. They just didn't expect to get old. They will say to me you'll be just the same. No I won't! I've already put plans in place for aging. I have said to them that I will never put my children through what they are putting me through.
They still don't get it though.

I have visions of them both falling at the same time and not being able to get help and it will be too late.

Despite all this, I love them and dread their passing. But, as I said, I will never put my children through the same thing.

The hard thing about elderly care is that the parent-child dynamic needs to be flipped on its head. For it to work properly, the child who for their whole life has been used to doing what their parent asks, now has to take on the position of responsibility and tell their parent what to do.

Those of you who say their parents won't accept carers/cleaners/other help - do you have financial power of attorney? In which case just make what is the best decision and pay for it using the POA.

My DF spent years saying he didn't need any help / he was perfectly capable of driving etc. When it became objectively clear that that wasn't true, we activated the financial POA and took all the decisions that we knew were for the best.

We took his car away. He now has a cleaner, gardener, carers, a mobility scooter, hearing aids, a falls alarm and grab rails. He would never have got any of those if he made the decisions. Yes he grumbled for a bit, but he's got used to it and is now much happier and safer than he used to be.

I do have POAs in place but the distress it would cause my parent to try and force someone into their home that they didn't want would prevent me from doing this. Much as there are similarities in these circumstances, people are very different.

I hear what you are saying and your feelings are valid.

However, there is a balance that needs to be struck between being understanding and empathetic of the feelings of someone losing their independence, vs the impact on another person’s life.

Does your refusal to accept more help affect anyone else? I think that is the thing to be considered.

I have no words of wisdom for you but so much sympathy. Your position is worse than mine was. My children were young adults, my mother was in an annex in my garden. But that phrase "I'm not at that stage yet!" will haunt me forever. In many ways I could have written your post. And yes, I feel your anger because I felt it too. You are not alone and you are certainly not a bad person for feeling the way you do now. My own DM was wonderful, kind and generous, and would have given me anything except the freedom to live my own life.

You're quite right that different people have different personalities which will make things easier or harder.

It sounds like you would feel guilt at causing your parent distress, so haven't forced anything on them. And that is fine as long as that decision isn't negatively impacting your life/your parent's life. Anyone who's raised a toddler knows that you regularly have to force them to do things they don't want to do (go to school/get dressed/do their teeth) because you know that in the long-term it's for the best.

DF did not want a cleaner and would regularly send them away when they turned up on his doorstep. Yet he couldn't do it himself - so what to do? We got him used to it by initially taking him out of the house whilst the cleaner was there and after a few weeks by coming back for the last 10 mins when she was in the house and sitting down and having a cup of tea with her so he could see that she was a nice, friendly person. He's got used to it now and looks forward to her coming.

OP you need to pull back. This is vile behaviour on your mother’s part. This is not simply about you providing care beyond your capacity but about you being in an abusive relationship with your mother. Step back and let social services take control.

What was she like when you were growing up OP? A good kind mother or one who emotionally abused & controlled you? Is her behaviour since her Parkinson’s diagnosis a surprise?

Perhaps my lack of toddler-raising experience is a negative here. Something to think about, thank you.

I think we need to be careful here. It’s good to share helpful suggestions but some comments seem close to victim blaming by saying that if the OP or other adult DC acts differently or pushes through what’s best then all will be well.

It’s definitely useful to get other views and input but Elderly Parents topic and in particular the Cockroach Cafe long running threads have helped me realise that this situation with DPs is fairly common. I carry a lot of residual guilt about what a I have or haven’t done, I don’t want further guilt around my inadequate handling of a situation completely outside my control.

In my case there were two DPs at home- it was impossible to force through any changes unless they were in agreement with them because they would just refuse the additional cleaner or support. Unless I moved in with them ( and that was really my red line) I can’t stop them closing the door to someone.

Absolutely @rookiemere
I suspect those who are ‘victim-blaming’ have little to none direct experience of this.