Newbie. Advice re elderly mum needed if you have time x

New to Carers Connect
1

Hello. I’m new here and could use some advice please.

I’m an only child with 1 parent, I’m single and in my 30’s. My mum is 70. She has been ill since before I was born and suffered multiple illnesses such as cancer, my father was violent to us both, they finally divorced when I was around 11 and I haven’t seen him since. Then my mum got very ill with cancer again, she recovered but was left with multiple disabilities (organ related) then my nan died, and then after a number of years my grandad died.

My mum has clearly got severe mental health issues but I’m not sure if it’s because of the above, as I have recently found out she’s been the same since she was a child. She point blank refuses to even admit to her GP she has any mental health problems and puts on an act around her friends, to her family and to all doctors. So i have no idea what they are but my therapist says she thinks hoarding disorder, depression and some sort of personality disorder (not that she is trying to diagnose her, just to help me with some sort of explanation really).

She is rude, manipulative, controlling and downright awful to me and always has been, she has no empathy and no feelings aside from if she is angry or crying. She will say ‘Happy Birthday darling’ or ‘I love you’ in the same voice a police officer would tell you that your child had been run over. There is no connection or emotion/feeling. Everything I do is wrong. You buy her a gift - she hates it, she asks for a sandwich - you get her what she wants - she hates it, she wants a mcdonalds and you take 5 minutes to bring it home and it’s still warm - it’s freezing and she hates it. To the point I even have to rotate the same 3 outfits whenever I visit her as she will say is that new, what is that, and try and pick apart something I have on and my appearance whilst I have to calmly say they are old clothes, well I appreciate your comment about the size of my arse but I’m a size 8 so I think I’ll be fine etc.

She doesn’t act like she likes me or cares at all. I was very depressed due to her treatment of me when I lived with her as a teenager for example and she couldn’t have cared less. I mentioned this to her as an adult and she said ‘oh you weren’t that bad’). I was literally s*icidal and underage drinking by myself at night to numb my feelings of despair so I could even sleep. I also found out that there is a family history of mental illness (OCD) about 10 years after my mental health problems started. Might have been helpful information at the time.

She describes herself as fun loving and happy and caring with a good sense of humour. So the self awareness is …totally non existent.

During the pandemic and her shielding I have realised just how odd she behaves, as I have had to see her more than usual, I used to avoid her as much as possible, as you would when someone is really nasty to you but now she can’t see anyone else I of course have been helping her where she lets me. Her health has deteriorated due to not eating or drinking water with all the medications she has to take and she has had several accidents in this time, each time refusing or becoming hysterical if i try and get an ambulance or try to get her to go to a dr or the hospital. For one period during the pandemic she was so dehydrated she hallucinated an entire argument we had and wouldn’t speak to me for two months. She then finally spoke to me rambling about this argument texts she thought we had and I was just saying, scroll up through your messages, this didn’t happen? And so she finally believed it didn’t happen. Now if I mention that occurrence to her she tells me she has no idea what I am talking about.

The time she fell and banged her head I found her laying in her hallway, I believe she had concussion. But she would not let me call an ambulance and started flailing around and becoming hysterical. I just didn’t know what to do, I knew the right thing was to go to hospital but she just wouldn’t let me take her or get an ambulance.

She will only go to see her consultant in London, not her local GP, which i am not allowed to go to during covid but i was never allowed aside from once to go with her, and then she wouldn’t let me into the room with her anyway. She has recently let me look at her medical paperwork from the doctor, confirming that either she has no idea what the letters have been saying or she had been lying to me and everyone else for years as she has all manner of things wrong with her she never mentioned.

She is a hoarder, the hoarded things are clean and in neat piles, but there are piles literally everywhere, in the hallway and in all rooms aside from the bathroom. I go and clean when I can but it’s hard to clean much if you can barely move around a room. She has a tantrum if I try and move anything or touch it even, let alone throw it away, she will have a rant at me for example if I throw away a plastic pot lid or a jar, assuming it is rubbish. I went through the paperwork that age uk sent me about safeguarding and she has mostly things from Level 2 and some from Level 3 as to the state of her home, but the clutter pictures don’t really help as their pictures look like mountains of random stuff whereas hers are in boxes and bags and tidily stacked, they are just literally stacked everywhere in some cases almost floor to ceiling, door to window.

She has some siblings but has always kept them away from me and me from them, I thought they hated me and was always baffled why they never visited, invited us for xmas etc. Finally I got one’s number from her address book when she was in another room and spoke to one during lockdown and we worked out she had been lying to me about them and vis versa for my whole life. They hadn’t even been told of my father’s domestic abuse and they had been inviting us places and asking about me, my mum had told them not to visit, that I didn’t want to visit for xmas, that i didn’t want them to phone me etc. Now I don’t know if my beloved grandparents even knew :frowning:

I let her borrow my iphone and she recently got her own and gave mine back not knowing she left all her stuff on the phone so I could see her texts etc. I felt bad doing it but i had a look at her messages to try and work out what was going on and she appears to pretend she is basically fine to her friends. She never mentions anything to anyone it’s all just ‘how are you’ ‘I’m fine thanks just watching tv’ type of stuff.

She clearly never talks in depth to anyone about anything and I basically know nothing about her ie I know she likes to watch certain tv shows, and certain sport. I couldn’t tell you much else about her, she will only talk about surface things like the weather, the neighbours, some random gossip. I also have no idea about her finances, her wishes or anything. For example i have tried to say to her her house isn’t safe and I am scared she will hurt herself due to it. She just will say ‘ok’. And that’s that. I ask can we go through this and get rid of some mess or pls promise not to use a candle and she says OK but not today. The next day will be the same answer. She randomly lopped off a load of her hair the other day when I wasn’t there, and when I asked wtf had happened she said it was wonky due to her bad haircut last year? I mean…she didn’t have a haircut last year, not that that would have made any sense anyway.

If I ask her anything she tries to blame someone else, tries to change the subject, start an argument or will completely blank me. It was the anniversary of my nan’s death recently and she got upset, but when I tried to be nice and say what do you miss about nan she just said oh everything i don’t know. So you can’t ask anything more.

Her siblings don’t want to come and visit her, they just say well we will ask her after covid but she will say no. Well of course she will, but could they not offer for me just once to pop round just once in like 10 years. They say now oh we love you and call us to chat any time. But I don’t need to speak to them for moral support. I really need actual support. Even if it was just once that they came. At the very least they could help by being a witness to me to see the state of her and how she is living and can corroborate the fact that I am trying my best and trying to help her surely?

I need to find some way for either someone to get through to her, to get her to see her gp, or to get her to agree to the social services to speak with her as I get nowhere. At the very least they could help by being a witness to me to see the state of her and how she is living and can corroborate the fact that I am trying my best and trying to help her. She has also told my aunt that ‘I don’t love her’. Charming. I’m the only one who’s bothered to see her since 2019!

I have tried her GP who told me it’s sad but he can’t do anything if she won’t come and see him. They keep sending her test requests and blood test requests so she’d have to go and have an appt where they could see about her mental health but she just ignores them. i’ve tried to contact social services but so far nobody’s got back to me. it just goes to a voicemail and i leave a message and then nothing.

I am just wondering what I can do really? I look after her as much as i can which isn’t much as she hates me doing anything or touching all her hoarding and she’s so rude to me while I am there. i worry constantly about her falling or there being a fire and me being arrested for neglect. That’s what I’m really worried about, that I will get penalised for her self neglect and refusing my assistance, or, with her history of lying, that she will tell them I am abusive. She often calls me aggressive for simply telling her she needs to please eat or have some water! I am always ‘nagging’ by asking her what she plans to have for dinner. I think she just makes it up a lot of the time as she will pretend to have made x y or z but then i go round and there’s no packaging in the bin and barely any washing up. I only ever find crisp wrappers or toast crusts.

To confirm though I have never been angry and aggressive to her or even raised my voice unless to tell her to stop calling me names. In fact I often pull over the car and have a panic attack on the way home after all the stress of being near her. I have always been meek and mild and am told to be more confident and forthright by everyone else so her assessment of me is so wrong.

I have written accounts of the state of things and dates and copies of the contact i’ve had with age uk, calls to social services and the gp and photos of all of her hoarding. I have records of the times I’ve tried to get service people to go to her house, she drove two away by acting bonkers when they turned up, racist when another turned up and the last literally blocked my phone number as she was so rude to him when he came to do a quote. I do not know if this would be enough for anyone official to see that I have tried my best if something did happen to her though?

If anyone has any idea of who else I can contact as well as keep calling the local social services or what else i can document to keep myself safe from being blamed in the meantime I would be ever so grateful. Thank you x

2

My mum was a “clean hoarder” too.
It’s sad and serious, I never found a solution. After she moved into residential care it took me and my two big strong sons a YEAR to empty the house. 10 sideboards, 10+ dining tables, 60+ dining chairs, yet we never ever had a proper meal there! Like you, I tried everything. Nothing worked. Mum’s plants were more important than us. I realised this sadly, lots of photos of the flowers she grew. None at all of me, or my family!!
Give up trying would be my advice. Distance yourself as much as possible. I’ve been doing some family history recently. To visit my grand house we had to go past her brothers house. I never met him. My grandad was one of 8 children. Never met any of his siblings. My other gran told relatives dad had died in the 2WW. In fact he became one of the government’s top scientists!
My husband’s family was so different, we all got together regularly, but my husband, his sister and parents have all died now.
Keep in touch with the relatives if you can, and accept that mum cannot change.

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Thank you @bowlingbun
Give up trying would be my advice. Distance yourself as much as possible.- sadly I can’t that’s literally my issue.


Keep in touch with the relatives if you can, and accept that mum cannot change. - I have absolutely accepted she can’t change, I don’t even care if she does, she’s never been a mother.

I had just been asking advice of what to do so I don’t legally get anyone blaming me if she falls and dies in her own disastrous mess. Or from not eating despite me trying to get her to.

I will say if you are in the UK - your GP is likely to do absolutely F all. so get someone to be your witness. A friend or neighbour or whoever, just to back you up.

Since I posted this I have told her neighbours about the situation.None of them give 2 sh*ts but it was for reference. I have sent a text every time I see her to her sister with an update of what I cleaned and how she was.I ignore her idiot responses I just want a record of what I have done. If you have no witnesses this is all you can do.

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Sadly it’s only a matter of time before she falls or hurts herself.
Next time, go outside and call an ambulance. You do NOT have to do what you are told!
It’s the only way anyone is going to see mum in her home. If she goes mad at you, so much the better, they can see what she is really like not before time!
They usually report back to the GP afterwards.

5

Just wanted to give a quick update and a thanks again for previous help.

I got run over last year and my leg mangled. Within a fortnight of my not caring for mum as I couldn’t even care for myself she got taken into hospital with heart failure and malnutrition after being found by a neighbour. She stayed there for 2 months and the hospital were useless. I would phone, nobody would answer for weeks on end. Phoned social again, no response. Found out all the heart surgeons emails from the website and thought why not, I have no idea whose care she’s under so I’ll email them all what’s the worst that can happen.

I begged for help getting them to tell her she couldn’t go home until she’d had a safety assessment of her home. They refused, told me occupational health had said she’s fine (she could barely take a few steps) and sent her home. I couldn’t walk, nobody else visited her and it took her losing so much weight from Feb-now she was so weak the warfarin nurse has to visit her at home then reported her state to either a hospice person or social services, they’ve told me both so not sure which. The carers, social, district nurse etc have been absolutely useless. I have a full
time job and they are forever calling me on with held numbers, they don’t even explain who they are or where from and it’s usually someone random each time and they all contradict each other and tell me conflicting things. No idea if mum has been given an assessment, I was told I would be given some sort of assessment but nothing came of that.

Still not sure what’s going on, and mum has no idea what’s going on either but a carer does seem to turn up now and again to wash her and make her a cup of tea, no idea if they do anything else but thats all mums said. I never know what time they are coming to be able to get a cab there to try and find out what’s happening. In the end I booked the fire assessment myself and that’s happening in a few days, I haven’t told mum, I am just going to feign surprise when they appear to avoid the hysterics if she finds out i’ve done that.

I have no idea of I just live in a bad area for care or this is what it is everywhere but its a complete shambles🤦🏼‍♀️

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Hi Sarah, welcome back. I’m very sorry to hear about your leg. I was disabled by a boy racer who hit the Range Rover I was driving with so much force it was written off!!! This all happened 3 months to the day after my husband died, the RR was his pride and joy.

From the experiences of many new people on the forum, the current situation is dire, everyone just wants to pass their problem on to anyone else they can think of. I don’t have a problem with hospitals wanting young basically fit people to go home asap after an accident or procedure, but there is no acceptance that elderly relatives are not able to get better, their bodies are worn out. What they need is kindness and compassion more than anything else.

Is the GP also useless?

Have Social Services actually visited mum?

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Thank you, sorry to also hear of your accident. Mine helped me in a way, all the family that had been pretending to care - not one visited me, or mum, not even once.

terrible it’s across the board although i suppose perhaps i should be grateful mum isn’t being singled out for unfair treatment.

Her gp surgery has told me numerous times they cannot speak to me about anything due to gdpr despite me explaining gdpr to them (I work around that field) multiple times, and that me asking for help is not them breaching gdpr, they wouldn’t even tell me the name of mum’s gp as i knew who it was previously but they left.

I have been told that a specific person who signed off the referral for a fire risk assessment for mum is a social worker, by the fire brigade, however that person had previously phoned me once to ask if mum has a will and told me they worked ‘for the hospice’ and wouldn’t give me a surname so I genuinely have no idea who they really work for or if it was just someone else with the same first name.

it was the district nurse who told me she had done the referral so I have no clue whats happening. Another caller said they were from rapid response and I was just like… rapid response what though, you can be a rapid response locksmith! And they just kept responding the rapid response team’ so I am still none the wiser. All they rapidly did was tell me mum needed a key safe and then got annoyed at me that I couldn’t sort it out until the weekend, they just cannot seem to fathom that i have a job, perhaps as they do their own jobs so badly its a strange concept. Just feel exhausted by it all tbh

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I know just how you feel, I’m so glad that our last elderly relative has now died, but my lovely husband had a heart attack and died at 58 before my housebound disabled mum died at the age of 87.
My husband said to me, not long before he died suddenly “You know where we went wrong? We chose a house too near our parents. If we lived further away they would have to accept help from Social Services, rather than expecting us to do everything for them”…He was right.

I still have a constant battle with Social Services over our 43 year old son who is brain damaged.

In the interests of your own sanity, I think you should consider getting a second phone, for your personal friends only. Then leave the first phone on permanent answerphone, asking people to leave a message with their name and phone number and you’ll get back to them.

I wish I could come up with a better idea for you, it’s so incredibly stressful.

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Gosh having to deal with all these people for 1 other is hard enough it must be ever so hard doing jt for multiple people for such an extended time.

They have all my numbers from mum so there’s no escaping unfortunately, they tend to call my work.

Another day another call, this time from the rapid response team. did manage to find out the are a branch of the nhs and supposed to assist within 2 days of being contacted. Since this has been going on weeks I am a bit baffled how that can be right but perhaps they had another person contact them separately from social or district nurse etc to the original one. they are going to go and see mum today or tomorrow for a mobility assessment. i am so confused why this is being assessed as surely they should have done that initially. without having a copy of any notes I guess I’d never know.

I have asked that they call me afterwards and they agreed as I also tried asking if I could see any of the notes surely they will make or someone would have made, they said they can call to discuss and maybe someone could send me an email about the carers, they will ask. Why in 2022 an email is a baffling concept I do not know!

10

Perhaps try no contact.

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I did Thara, I got run over and nobody could contact me or me them as I was in hospital alone with nobody to bring me anything so I had no phone charger for weeks. She immediately deteriorated and nearly died. As I said she was there for a couple of months. And still the doctors sent her home with no care, no assessment and no f’s given. Had they done their job properly I wouldn’t be in this position. She is mentally unstable, not an evil batman villain.

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Sarah

Because of the way your mother is I don’t have any helpful suggestions and would hesitate to due to the dangers of it, eg leave her to manage for a weekend or a couple of days, because from reading your posts I can see that it is not an option and would be dangerous to do so.

I have been following your posts with BB’s great advice and shaking my head that I can’t offer any advice regarding your mother and I have been counting my blessings here.

You seem to be at screaming point now.

Don’t worry about negligence etc, you are doing all that you can and recording and documenting things.
Put it in an A5 page a day diary or dated entries into a document on your computer, including an acronym like TSS text to sister sent.
have phrases/acronyms to make it easier for you

There was a time my mother was struggling to get liquids down and I was very worried, the doctor said you are putting drinks there and telling her and reminding her, it is all that you can do, it is her choice if she doesn’t drink and I asked if I would be in trouble if she got dehydrated and she said I wouldn’t because I provided drinks and prompted, she told me that I cannot be responsible for another persons choices or actions. I queried if there was any medical issues causing her not to drink, naming a few things that were going on but they were not a cause. Yes it is a responsibility and a worry but please read this paragraph again and put your mind at rest, because it is needing some rest.

Write to the GP surgery FAO the doctor for xxx, as the the daughter and care of xxx addressing your concerns for your mother so you know they have it in writing, including all your contact details.

I agree with BB regarding ambulance, go outside and call them.
Sometimes my mother refuses ambulance but that is because she doesn’t realise how ill she is and she doesn’t want to cause a fuss, so I tell her an ambulance is on its way because she needs one.

I am sure you have more to worry about over not dialling 999 than you do for some of the other things regarding your mothers lifestyle.

The runaround you are getting is unacceptable.

13

You have every right to call an ambulance. When the paramedics get there, they can assess and recommend: your mum has the right to refuse, but then there is a record which will show that you called for assistance, it was offered, and refused.

Which means no one can question your actions, or lack of. And I think it’s important that you consider that in case anything happens.

14

The runaround from all the professionals is unacceptable.
Don’t they talk to each other?!
There does not seem to be any joined up thinking, they seem to have been working in silos for your mothers discharge from hospital.

I hope the fire safety visit goes well but I am not holding my breath.

A few strategies that might help take the heat out for you a little as you seem to be on a backfoot situation and no control or handle on anything causing you much angst and it would be much better if you could get on top of some or discount some of them as well as you can.

When you get a withheld number on your phone, don’t answer let it got to voicemail and see if there is more introduction about who and what they are. it is none of their business as to why you couldn’t answer the phone, you don’t owe explanations. That caller might try a few times in succession for you to answer before they have to leave a message. If they don’t leave a message they will call back later and you will need to answer because they don’t want to leave a message.

Interrogate them, if they are asking you anything ask them who and what they are why they need to know, be the gatekeeper.

Can you leave a discreet note for the carer to say you’d like to meet them and introduce yourself and can they let you know around what time they are there? It is worth a try.
I would say don’t stress about this, unless or until your mother says the times are unsuitable or whatever. If she isn’t saying anything then you know that she doesn’t want you knowing and leave her with it. Take a step back and leave them to it until you are needed to step in.

Work on yourself. Be kind to yourself and be your own best friend.

Relax. Chill.
You are doing all that you can and more all considered.
You can’t do what she won’t allow you to do.
You can’t know what you don’t know.
If you are being locked out of her life with her boundaries and closed doors then that is her way and how she wants it you just have to leave it there and leave her to it. You know this already.

Don’t let things become battlegrounds, it’s no skin off her nose and you can do without them on your conscience and subconscience.

Sit down with a brew and clear your mind, then think about your boundaries and resilience and how you will bolster them back up.

I hope you find something useful and helpful from this reply.

15

I second that!