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 seem to have made you more angry - I apologise. I didn't mean to question your right to feel angry - if course you are entitled to feel whatever you feel.

And your situation sounds way more challenging than the one I was in. I would prefer not to have had to provide personal care for my doubly incontinent father, and yes the process of caring for him at the end did harm my mental health, but it did not ruin my life, give me PTSD, or the other things you describe.....

I commented I suppose because a lot of people close to me think I should be more angry with my mother for creating the situation - but to be honest I just think she couldn't help it, for whatever reason. I don't think she intentionally and maliciously created a situation intended to harm us.

I suppose I do have one question - and this is not a criticism in any way, I am just trying to understand - at the point where it was destroying your life, why didn't you walk away?

I couldn't, because it was my father who was suffering, and my mother who was making the choices (if they can be seen as such) which led to this, so I would have been "punishing" (not the right word, but can't think of another one) an innocent person.

But if your mother was the one rejecting the external care, and you could see this was destroying you, and you believe it to be something within her control to change - why didn't you walk away?

Not a criticism at all - just an attempt to understand.

The only thing the adult child can do is say "Fine but I'm not able to do it for you, so I'll leave you to sort it out" and step back. Someone with a job outside the home is simply not in a position to be an unpaid carer for an ailing relative and actually those who try to combine the 2 roles are exacerbating the situation because the elderly person is being rescued regularly, rather than realising that things are getting out of hand.

This is absolutely true but I'm going to add that it's not just people with a job outside the home who can't manage the needs of elderly parents. I'm 64, retired. I have 3 dps/dpils still alive. All incredibly needy. I have my own health concerns and these are meant to be my golden years! They take all my time. They are never grateful, there is always more. I cannot even remember what I used to enjoy and I am so exhausted that sometimes I can't even form sentences.

Thanks, I needed to hear that after a morning berating myself (for no reason at all!) about the things I could/"should" have done differently after the recent Big Crisis.

So several people have questioned why I haven’t stepped back, or put in boundaries, or stopped facilitating her. And I understand why people who have not experienced long term, sole care for a person with brain disease, would ask this. I’ll give just a few examples to demonstrate. This is the tip of the iceberg.

1. Despite my mother doing very little in way of practical help or support of me during my adult life, the moment my dad passed away, she told me she was moving house to within a ten minute walk of mine. I’d just had my first child and she knew I had bought the house for the school near it. She knew I couldn’t move again. She didn’t ask me how I felt about her being within walking distance. She’s never bothered to come see me for years and years. Because she refused to drive. I always drove to her house. But now she was alone, she simply expected me to be her entertainment, personal assistant and replacement spouse. I felt dread when she told me she was moving. I orchestrated the entire move for her because despite all, I am warm natured, a fixer and I love her. My dad ‘s very last words to me were ‘look after your mum’ and they were fresh and ringing in my ears. The first week after moving, she turned up at my house several times, unannounced at really challenging times. If I suggested it was not a good time she’d guilt me. I was really up against it with my dad passing, a newborn, a toddler and my husband away with work. I gave in from sheer exhaustion.She would physically push her way in the house. I can’t restrain my own mother. Since then, as her brain disease has worsened, she’s still physically able to turn up at my front door. I’ve had her do this many times - sometimes with delirium and hallucinations, sometimes because she’s bored and wants me to entertain her, sometimes because she wants me to fix something for her. You can’t physically stop a person who refuses to respect your boundaries from turning up. Once, after many years, my entire family had to hide in the house as she banged the door down. I’d been told to put in boundaries and stop facilitating her. This resulted in her sitting in my plant pots, shouting and dragging neighbours into the picture. When someone causes you and your young children so much distress, on the spot, at that moment, I often had to allow her to bulldoze me to protect my own children from witnessing more horrific showdowns. And you have a split second under pressure to decided during these moments which way to jump. You don’t get the chance to quietly contemplate. They drop stuff on you out of no where. I work from home and my office is at the front of the house downstairs. She would turn up and bang on my window. I would be presenting to people online. I could not stop this. Brain disease does not care for the carer’s situation. I suppose if I lived in a large house with electric gates I could stop the physical aspect of her turning up.
2. Times when I decided to not go over during the next crisis at her house, people in the community and her neighbours would come to my house and wake my children and cause them great distress. It was less damaging to my children at times for me to comply and go over to stop the drama at my own house.
3. Once doctors and social services and mental health team get hold of your number (my mum dished it out to them) they call you from many unknown numbers. I’d try to prevent answering calls but I had to answer some in case it was related to my children. The adult social care system will find you and hound you. It’s impossible to understand unless you have lived it.
4. She’s clever. Despite the brain conditions. Good at lying. For example, it was my child’s birthday party at my house and she turned up. I could not ruin it for my child by making a scene. And she would manipulate my child so my child would want her there. That day she said she was very unwell, out of the blue. During the party this turned in to her being quite unwell. On further questioning she admitted she ‘might’ have had a UTI for a day or so. She deteriorated quickly and to protect my child again, I did the only thing I knew would stop ruining the day, I took my mother out of the situation by booking and taking her to an out of hours gp to get treated. I overheard her tell the nurse there that she’d had symptoms tor 7 days. This was classic. Refuse to see a doctor then the impact of that was I missed my own child’s party.
5. When someone has the type of conditions my mum has, things can change in a second. I would arrive at her house for a quick brew to find e.g. she’d taken CBD oil which thinned her blood so much that she had blood clots the size of grapes falling out of her face. They present you with the most distressing events when you least expect it. No one could walk away from such scenes unless they literally did not possess a heart. You go immediately into emergency adrenaline mode, because it IS an emergency. You can’t plan for these events and there are many of them.
6. The one time I refused to go to an emergency call at 10 pm, when her district nurse called me, they told me their next patient would die in pain if I didn’t got and wait with my mum, as the next person on their visit list was an ‘end of life’ call. My was in deep delusion and hallucination and had refused treatment from emergency response teams for five days by this point. This was the first time I refused to go. Because of my decision the ambulance for my mother came more quickly. I have to carry the guilt that some other poor individual had to wait longer for pain relief because I refused to facilitate my mum that night.

It breaks the very best and strongest of us. If you are lucky enough to not live within walking distance of an elderly parent, you could put in more boundaries more easily. If you do not, like me, the system and your elderly parent will find a way of getting you to comply by relentless chipping away at you and manipulating you when you are at your most tired and vulnerable. It’s similar to death by a thousand cuts. They know how to keep cutting you until you fold.

I hear you - absolutely. Three weeks before my mother died of cancer she came out of hospital having refused to have a care package - and because she’d refused it, we weren’t allowed to say “Actually yes she does need carers” so we had to get it sorted out “in the community” which takes a lot longer because it’s not considered urgent. And everything was like that - she just couldn’t accept that she wasn’t able to do things for herself.

I suppose the only way to see it (without losing your sanity!) is to see that that’s how she managed her whole life and without that attitude she wouldn’t have got that far in the first place. And you can’t expect someone to change their personality at the end of their lives.

It sounds like it should have been the highway, long ago. Put a stop to it now. See a counsellor if you have to, to help you find the strength to simply say no. Every day you tolerate her bullying demands is another day of peace she has taken away from you.

I don't really understand this. Like many people I have sometimes needed help when health issues have become a problem, so do you know what I did/do? I admitted/admit I need the help and I got/get the help. Why on Earth wouldn't you? No one is fooled, people can see when someone isn't managing. Nor is anyone impressed by a person's proclaimed 'independence' when said independence is only achievable because it's facilitated by someone else's work and stress. Can people really not see and appreciate the burden they put on those around them by insisting they don't need proper help? It's not admirable, it's just fucking selfish.

I am in a similar position to the OP with my own parents. My current nightmare is my incontinent father refusing to wear nappies because he feels it's beneath his dignity. Yep, I'm sure it's difficult to accept your body betraying you but what the fuck is dignified instead about making other people clean up when you piss and shit yourself? It makes no sense.

Right. I never believed that excuse, of course they know they need help. Sometimes they want to hang on to their savings and not pay for help too.

But it seems crystal clear to me that people like this think they are entitled to the time and care of their children and simply want to control their adult children, like they always have.

OP I hear everything you are saying here but it will not change unless you make it change unfortunately.

My childhood, adolescence and early adulthood were spent facilitating my parents’ lives. I worked for their businesses (while studying), did their admin, household stuff, banking, medical appointments, you name it. They expected things from their children they certainly never did for their own parents. Then I had enough and stepped back. I was argumentative, rude and dismissive. My mum once said she might as well kill herself. I told her to go for it. I was not going to be manipulated any more. I was going to live my life for me.

And I have kept that promise to myself even through very difficult subsequent situations, such as my parents’ divorce, my father’s death and my mother now living on her own. I have not been and will not be a carer. I will not facilitate her life. She is not even welcome in my home. I moved recently and have refused to give her my address. Because I know my happiness is not her concern-it’s my labour that she wants.

My life is my own now.

having read many of these threads in the last few years (and having had therapy last year) the best thing I have done is to get a second phone.
The practicalities of that is that I’ve just put the SIM card in to an old phone, reduced it to a £6 pm tariff and got a new sim for my ‘stress free’ phone and just given that number out to a select few and any one I need to.
it’s made so much difference to my mental health !

Parkinson’s disease is not cause by dyeing one’s hair, or by chemicals damaging one’s brain.
Being constantly angry with someone who has a neurological condition is a little harsh. PD causes all sorts of symptoms; I have witnessed my grandfather and then my stepfather both developing the disease and over the years their symptoms varied but in both included cognitive decline with the associated effects such as poor decision making and risky behaviours.

Parkinson’s disease is a brain disease. There are countless studies on the impact of chemicals on brain health. Genetics load the gun, enviromental factors pull the trigger. I’d rather lower my chemical exposure as a result.

I’m not constantly angry with her. I’m sometimes angry (and mainly hide this when I am), often traumatised, regularly exhausted, yet always kind to her.

I’m dealing with several overlapping health issues with my mother - not just Parkinson’s.

It’s really interesting to me that as the carer, when you go through a period of complete burnout, people seemed compelled to list a whole host of reasons why you should be still focusing on the elderly parent and not yourself and why your feeling are invalid to them. “I’m feeling suicidal and I’ve haven’t slept through the night in years and I can’t drive today from blinding migraines from stress” and STILL someone will say “I know that sounds really hard, but can you just go collect your mother and take her to her hospital appointment before you jump off a cliff.”

This is a good idea. I’ve finally organised for my phone to have voicemail disabled entirely. I had to call the provider up and make a special request. I now set my phone to do not disturb for work hours, and allow favourite contacts through eg children’s school. I used to physically shake when listening to the voicemails stacking up on my phone daily from countless agencies and others linked to my carer role.

Being constantly angry with someone who has a neurological condition is a little harsh. PD causes all sorts of symptoms; I have witnessed my grandfather and then my stepfather both developing the disease and over the years their symptoms varied but in both included cognitive decline with the associated effects such as poor decision making and risky behaviours.

Were you the sole carer for your stepfather and grandfather as described by the OP?

It sounds like there is a lot more than cognitive decline of Parkinsons going on with OP and her mother but whether or not there is the impact is the same on the OP - she has to deal day by day with the unrelenting caring and sorting out and cleaning up after avoidable disasters and she is entitled to be angry.

My MIL is a lovely woman and we all love her but I look at my dh cleaning up the financial and administrative mess she made because for years she refused his help and did the opposite of what he advised. It was her choice as an adult woman. But she isn't sorting out these things - he is and it is taking him a lot of time and effort and angst to do so. And no, he isn't going to leave her to flounder now she has less capacity or dump it all on his siblings. Not accepting the stage of life you are at and refusing help is fine - if it affects no-one else - rarely the case.

I delinked my phone from my Fitbit so I don’t get beeped on that if I get calls or messages.
I also changed my phone ring tone monthly to try and reduce the cortisol rush every time it rang.

Everything helps a little.

I agree rookie. God its tiring. I visit saturday thats it she would push more on. Find with menopause Im tired keeping it all going. Def boundaries help for me.

Someone on the forum had a mother who lived six hours away. They drove up every weekend to cook and clean for mum. At 53 they had a massive stroke were left wheelchair bound, partially sighted, use of only one arm, some brain damage, and had to go into a specialist living facility. Their mother on the other hand carried on fine.

Don't be this person I decided after following this lady for a long time. I learnt hard no with my mother.

See this is where you 100% need to lay the law down. No you wont be getting her Xmas Tree down. Its not life and death and you are just too busy. What I suspect happened is that she then tried the emotional blackmail to get you to do it.

What would have happened if you didnt do it? Would the world fall in, would she burst into tears, would she cut you out of her will.

Can you tell I have done this before and with my late Mum she put on the sad face, its not urgent but...

One of the things I learnt was to not get into a discussion. Elderly parents are so self centred you wont be able to persaude them. They will just go and on until you do it. The majority of old people become sly and crafty about getting what they want.

DONT ENGAGE.

I have no idea but it seems to be common. My FIL and MIL both did this, he was dying of terminal cancer and needed nursing care but refused to go in to the hospice until the final fortnight. MIL has Alzheimer's and is a nasty and manipulative piece of work who makes everyone's lives unnecessarily difficult. My FIL sadly passed recently so it's now just my MIL. My lovely DH has been almost worn in to the ground by them both yet neither could see what they were doing. Refusing carers, cleaners, help from the Admiral nurse, help from
social services, the Hospice, missing multiple
medical appointments for no reason. They just put it all on their sons and sat on all their money in the bank.......the money that will be gone when MIL inevitably goes in to a home anyway. She can't realise that we want her to be independent for as long as possible in her own home yet everything she does just goes against this and makes it more and more likely she will have to go in to a home quicker. She is going round telling everyone about her controlling sons at the moment. I'm sorry you are struggling. Just to say I understand.

OP I would have a look at the site Out of the FOG, some of that might help you. She does sound like a steamroller, I agree.

FIL favourite phrase was ‘we’ll cross that bridge’. What in reality, meant that when crises hit they were straight on the phone to SIL or us an hour away. Hauling a naked FIL in the end stages of cancer out the bath was a low point.
So much stress, anxiety, physical harm which could have been avoided all round. It left a very poor legacy.

I wonder if it would help you set boundaries if, instead of thinking about the impact of your mother's behaviour on you, you reframe and focus on the impact her behaviour has on your children.

For example, this: "Refuse to see a doctor then the impact of that was I missed my own child’s party." Could read "...the impact of that was that my child had their own mother miss their party".

I understand making a choice to sacrifice oneself (and I'm grateful for people's comments helping me be more on guard due to the insidiousness common to such situations), but I really do think that I will be able to manage healthy boundaries when my turn comes around - because I default to thinking about impacts on my children and husband, rather than on myself.

I'd be really interested to hear if anyone has shared my attitude but then ended up finding themselves in a similar place after all, despite their best intentions.

All the best OP, I really hope you manage to find a way to prioritize your own children, as heart-wrenching as that process might be.

She isn't independent though. What she means is that she's not at the stage of getting external help to remove the burden of care from OP through choice. She is obviously very demanding so expects OP to do everything for her, while insisting on continuing the fallacy that she is self-sufficient.

Exactly. Proclaiming how independent you are whilst you are lying on the floor waiting for a relative to drive over to pick you up is hardly something to be proud of. You are absolutely kidding yourself thinking this is "independence".

Having carers help you at home actually increases independence, improves the ability to live at home and prevents hospital admissions, it doesn't decrease it. If you want to increase your helplessness and dependence on others, the quickest way to do that for the elderly is to fall over and break a hip. Once that happens, its usually a fast decline into a nursing home.