I’m not at that stage yet

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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?

Mine tried similar with WFH. She seemed to think it meant I was free and available to her. She reads the sort of newspaper that is very anti WFH which might be why!

She doesn’t live nearby. One attempt at
arriving at the front door and not getting in as I wasn’t going to abandon a work meeting for her put a stop to it. She attempted to tell me all about how embarrassed she was at my behaviour but I kept reiterating that I’d told her I was working and not available.

This is such a perfect example of holding your boundary!!

It was really hard. I briefly considered pretending I had to take in a parcel and temporarily leaving the meeting to let her in. Then I’d have had to return to the meeting and she’d have had to sit on her own and make herself a drink.

But I knew I couldn’t trust her not to interrupt the meeting so couldn’t risk it. I don’t think she thinks the people on my computer screen are real!

Maybe. But there’s a huge difference here “She doesn’t live nearby” My mother does/did.

When they live within walking distance, it is a whole other kettle of fish.

I did everything this poster did too. I started to consistently refuse to answer the door. She didn’t like it and told everyone that I was cruel. This doesn’t stop a person who is in delirium or hallucination. And she still did it when not in delirium. They’ll repeat the behaviour every day for weeks if they want to. Even if they know you won’t answer the door and haven’t for months.

I couldn’t move my office space for several reasons. Confidential calls I have to take. Cost. Lack of co-working space where I live. Time.

The only boundary that could have stopped her was me literally picking up my house and moving it 50 miles away.

And once, she absconded from the nursing home 20 miles away, and STILL turned up.

It is why stalkers can do it for years. There is no law to stop it. And unless you live in a huge gated house with intercom gates, you are absolutely stuck in the cycle of intrusion from them.

All I am saying is, it is really not as simple as carrying out boundary setting. Did it mean she wasn’t physically in my house? Yes. Did it mean I was able to work without my heart racing, my body in flight or fight mode and able to concentrate on my work? No. Because when someone is hammering on the door, and the dog’s barking and going nuts, and you are scared of your parent and FOR your parent at that moment in time, it is impossible for it to not impact your nervous system.

So many fit and healthy lives are being destroyed by these selfish people. I suffered greatly from a mother who was similar. My father was dying and mother was recovering from mild stroke. Poor Dad, I choke every time I think of what he had to endure both with his illness and her. She would say things like "I'm the one who is sick, he's fine, look after me first" and so on. Heartbreaking.

I've name changed for this post. I ended up self medicating with alcohol and it nearly killed me. The week my mother died I stopped and never took a drop again. She outlived my father (67 when he died) by 18 years, 18 long, terrible, traumatic years.

Glad I got that out. It's inside me to this day, despite much counselling and all that stuff. But I am sober, and realise I drank to eliminate the pain of it all.

Selfish people are the worst. Never think of the impact of their behaviour, needs and wants on others.

Keep the faith folks!

It’s also very hard to have boundaries with DPs who are losing their faculties, knowing if you don’t do the thing or make the visit they could end injuring or poisoning themselves, particularly if you are the only DC.

In all other aspects of life I have great boundaries but somehow the recipe of two declining DPs - both with very different demands and needs - reduced me to a shell of myself within a few months at ramped up setting ( had been on slow burn dial up for a few years). Then at the time I was prepared to walk away and let things happen, DH stepped in for a few more months until he realised that a care home was the only option.

This so resonated with me. As the OP said, "being scared of your parent and for your parent" was the position I was put in, and it almost destroyed me. I recognise the sensation of the heart racing. It is very hard to put boundaries in place when no-one else respects them, including Social Services, especially, when a different "sweet little old lady" face is presented to the outside world. I was literally booed and hissed at when I went to see my mother after she had been placed overnight in social care, for her own safety, after the Police had taken her there! I have vowed that I will never, ever put my daughter through what I went through.

Good point @LadyLindaT, I know social services and the medical profession don’t have much choice because of limited resources, but it almost amounts to gaslighting the way they seem to assume that your top priority should be the elderly DP, rather than your own DC or indeed making a living. I met astounded silence when i said I had to go to a job interview rather than “nipping” up an hour along the motorway to pick up DF who apparently was compos mentis enough to be released to his own home, but apparently unable to make his way there in a taxi. I won that one, but it was an ongoing battle to try and assert any boundaries because we all knew they weren’t safe living at home, but they weren’t prepared to say it.

Absolutely. If you saw my post before about boundaries I acknowledge that is not always as easy or even possible at times. My comment above was simply acknowledging that @EmotionalBlackmailhad done something powerful for themselves It was about their particular situation and in no way critical of you and your extemely difficult, challenging situation.

I'm so sorry you've had to live with this constant trauma that has affected every aspect of your life.

@LadyLindaTand @rookiemere, I absolutely agree. Those have been the hardest boundaries to hold. The level of emotional manipulation some professionals will sink to is criminal. But I have held my ground over and over and miraculously on more than one occasion, when SS were adamant they could not do, or something wasn't a service they could provide, they managed to do it in the end when I didn't cave. My situation is in relation to my elderly grandmother rather than parent (who is actually much more fragile healthwise than their parent so just isn't able to do any of what needs doing fir their own mum)

The guilt and gaslighting seems to be mainly targeted at "the daughter". The daughter is generally a grown adult woman with children and work responsibilities, but somehow they don't count, no matter how much we try to put systems of support, help and care into place for an ailing parent. So much easier for them to say, "Oh, but s/he just needs you."

It’s so awful isn’t it @LadyLindaT. It’s the most awful, impossible feeling in the world. You might physically step back, but you can’t out run the mental anguish. You take that wherever you are, wherever you go, and it breaks your soul. For them. For you. And for who they used to be. Sending hugs.

Thank you @worldsgonemadnowx

But you are describing someone with a severe mental illness or significant cognitive impairment here, not someone who is merely elderly. You say you felt dread when she said she was moving, but you then facilitated it. That was the time to ask about her expectations and agree what would work for you. Some of the scenarios you describe seem like they justify medication or sectioning but it’s up to you to make sure the situation is fully understood and draw clear boundaries, not martyr yourself to the extent you’re as bitter and angry as you are. You are an adult with agency.

@PinkTonic you do not understand how cognitive decline starts and then progresses. You don’t get a text message from the NHS telling you ‘alert alert your parent is ok this week but from next week they’ll enter their first episode of delirium so lock your doors’. It doesn’t work like that. It is insidious and confusing.

I do not martyr myself - that is offensive.

You can’t stop someone moving house. She would have moved house whether I helped her or not. Please tell me how you stop someone buying a house somewhere when they want to.

When she moved house, it was nearly a decade ago. People with brain disease decline very slowly in most cases. At the time she moved house , she was acting like your average person who was recently widowed and was able to live independently.

I said my expectations many times before she moved. I repeated them after the move. I explained very clearly my capacity. We agreed behaviours. She broke our agreements. Please tell me what you would have done in this case?

You only get sectioned if you are a danger to yourself or basically start physically assaulting people. She’s never done any of those things. Getting sectioned is a very last resort - as it should be for human rights.

Every person’s brain disease is individual to them. You can’t read a manual and predict years in advance, what they will do and how they will
act. They go through periods of relative normalcy, then for no obvious triggers, periods of complete deregulation.

This is not because I was not clear enough with her. My expectations were crystal
clear. You can’t ever have had experience with someone with long term, degenerative mental impairment, if you think I am in some way to blame for the hell I have endured for a decade.

I’m not sure why some people on this thread think I brought this on myself because I wasn’t clear enough with her.

And she’s on that much medication she rattles. Guess what. There’s no magic pill to make it all go away.

It’s the classic boiling frog as they get worse. Mental illness in adults is one thing, but in a parent with overlying cognitive decline is a whole other kettle of fish. Boundaries work for some child/ elderly parent dynamic but not all. It’s incredibly difficult to prove lack of capacity to services, especially when they see the ‘lovely’ side of the parent. It’s also impossible explaining how much of your time/ and mental effort it takes up when you get the ‘can’t you just…’ I completely get the gaslighting that can happen from elderly parents who were always on that spectrum of narcissistic which I think your DM is, and no matter how hard you try, nothing sticks. I think it gets to the point of either completely walking away/ in your case possibly moving countries! Either that or accepting that you are always going to be tied and be on
an emotional/ physical rollercoaster for as long as they are around. It sounds like you are in a better place mentally and are managing some small wins though?

Thank you @JumpLeadsForTwo- I can tell you understand. Boiling frog it is indeed. She’s now in permanent residential care and although her decline is now accelerating, she has 24/7 care for the first time ever. It’s a weight off for me in many ways but it’s relatively new, so I’m just learning ways to best handle the new normal. Thoughts go to anyone else stuck in the long goodbye.

Getting older is a series of losses that need grieving. And those losses, once they start, tend to gain momentum ... it can be very scary for people because they are saying goodbye to all that life means to them and inside they feel about 30.
It will come to us all. Think of it as a grieving process and it might be easier to tolerate in a relative. Time is needed to come to terms with what is happening. And what is happening is pretty final and not easy to come to terms with.

Yesterday I was at a funeral of a friend's parent. They had lived with my friend nearly 9 years after being widowed and unhappy about living alone in a rural area. Nice person and had been a loving parent . But as the years crept on the cognitive and physical strengths faded. Last two years very very difficult with falls , multiple hospital admissions and I saw my friend struggle so much .

Anyway what is so sad is that while there was grief there was also a relief that finally it is all over . My friend told me in confidence that she felt it was a shameful thing to be glad a parent had finally died. I assured her that she was definitely not the only one that ever felt this way and I see from all the women going through something similar that I might be very right.

@Nofeckingway I think you are right. My parent is sadly dying now aged 93. Even in this very last phase when they are so weak and frail they are difficult, nasty to us and unamenable. We have had 3 years of hell, and the 10 years before that were increasingly difficult. I will be relieved when it's over, in my mid sixties I will finally be free. If you had asked me how I would feel if they died when they were 80 I would have been very upset. But these more elderly years have broken me. The self absorption, complete stubborness and the lack of care about the impact of their decisions and choices on my sister and me have been breathtaking. My journey is nearly over but I send strength and sympathy to all those still on theirs.

Honestly why not just get up and walk out next time she starts? So what if she tells people her version of events! It honestly sounds as if you are heading for a breakdown, you really should just put the breaks on now. Visit or call as often as you can cope with. Anything else “don’t think you are at the stage of needing me to do that mum”
Sounds like she might learn that actions, and inactions, have consequences. But that is absolutely fine. As she has capacity then she absolutely is free to make decisions that seem bonkers to other people.

@Gassylady Yes, I know that my Dad has said some nasty things about me to people -but the ones who really matter (family members and close friends) know the reality. They’ve also experienced firsthand how unreasonable he can be!

Sending you thoughts. It’s so so difficult.

God yes feel for you all. Its really hard and sometimes years of it. My mam quite needy now. Some days she so negative

This really speaks to me. When my mum died after 9 years living with a terrible degenerative illness, I was mostly relieved. I was glad she had a 'good death' and died peacefully, as she had never accepted her failing health and made it difficult for all of us too.