Feeling Lost

I’ve been caring for my mother for over 5 years and every year her condition gets worse. But it’s not the fact she’s unable to walk without a wheelchair that I have to push for her or that she suffers from incontinence or has constant spasms that she spills her food everywhere that gets to me, its the change in her mental state. I think my mother has a personality disorder. One minute we’re fine, the next she’s starting an argument with me or giving me the cold shoulder and I am just sick and tired of it all. This has been going on for years and has only gotten worse. She blames me for her anger issues, blames me for her illnesses, says I don’t do enough for her. I am currently doing a masters (part time so I can still look after her) and bearing in mind I have had to push my exams back to August, she still is not supportive of me pursing my own life because she reckons I am using her illness to pursue my own carer. She always says I should’ve not done a masters straight after my bachelors degree but rather I should’ve taken a few years off to look after her properly. I am at my wits ends because all this time I still have not even managed to get any revision done because my whole life is about her. You see, we also recently moved house so on top of me trying to get the house organised, i’m chasing social workers and OT’s to get all the equipment she needs, i’m collecting her meds, all the while trying to make attempts to look after myself. I’m paying the bills, i’m doing the grocery shop and by the end of each day I am so knackered I go straight to sleep (and I don’t usually sleep till 3-4am!). I then don’t wake up until 11am on average. I just can’t seem to be able to wake up when my alarm goes off. Everyday I just feel so tired and frustrated and confused. It’s like I don’t know who I am or what i’m doing anymore. I could just walk into my mum’s room to wake her up for her meds and she goes of on a rant (repeating the same rant over and over for hours) because I spoke to her in a childish manner or because I don’t know how to speak. She just gets mad so easily at the most silliest of things and if I speak to people we know about how she is she thinks i’m bitching about her but I just want her to know that I am sick and tired of all the arguing and her mood swings. I know she needs help but she reckons its me that needs a mental evaluation!
I apologise if what i’m writing makes no total sense but I just needed to get these words off my chest. I’ve just been feeling really emotional and lost in myself. I’ve had opportunities come my way and I’ve felt guilty of taking them because its like I’m getting on with my life but my mother isn’t able to get on with hers and so I’ve turned them down but I just keep thinking is this it for me? I saw a similar post on this board and someone was mentioning how they’re friends have a social life and they don’t and I just broke down in tears because that has been me my whole life. I’ve been looking after mum on and off since I was 8 but 2014 was the tipping point in her health when I became a hands on carer. I know how it feels, to watch the world go by, your age mates living their youth and your just stuck in this bubble that no one understands. I’m bloody 23 and have never been to a rave! It just makes me sad that I am doing my best, bearing in mind we don’t get any training on how to be a carer, or how to give someone a wash, or to dispense medications, we just get on with it and then to be told by the person you care for that you’re useless and doing a crap job? It hurts. It really hurts. I know my mother has made a lot of sacrifices for me and I have in turn for her but to keep using that as a daily taunt, I’ve just had enough. I am sick and tired of being the scape goat for however she’s feeling. I am sick of one minute she’s in a good mood and the next she’s triggered by something and is all of a sudden angry at me. I really do wish I could go back in time when things were much simpler but here we are.
As I say, i’m sorry if this doesn’t make any sense and is wayyy too long to read but I just needed a vacuum to put my thoughts and this seemed the best place to do so. To all us carers, even if no one recognises your efforts, I recognise all that you do. What we do, looking after our loved ones 24/7 without a break or pay is remarkable and I believe we will be rewarded in our lives somehow, someday. I’ve had a little cry and this vent so hopefully I can now get some sleep, just dreading what tomorrow has in store. Sigh.

Hi Has, it makes perfect sense, many of us here can identify with your feelings.
How old is mum?
What is wrong with her?
Does she have any outside help?

I am so deeply sorry for all that you are experiencing. I’m full of admiration for the courageous way you carry on.
Look on line to see whether there is a “Coalition For The Disabled” in your area. They may be able to offer advice and support. Also your Social Services Locality Team should quite definitely be required to come and do an assessment and offer some sort of support to you.
Stand firm! It’s too easy to get walked all over.
I genuinely wish you well… I know that’s only words but they are sincere.

Hi Jas,

I completely understand how you feel, though I take my hat off to you for having been caring for your Mum for so many years- it’s truly inspirational and you should be proud.

I think, when you care for someone who is meant to be your ‘authority figure’ (i.e. a parent, a grandparent), it tips the scales dramatically. They’re supposed to be looking after you and I suspect your Mum’s bouts of rage towards you are down to frustration and guilt. I have the same thing on a semi-regular basis from my Gran.

Nevertheless, it doesn’t stop you feeling upset and like a failure at the time.

You could arrange to schedule a meeting with the OT, preferably without your Mum being in earshot- you should tell them how badly you’re being treated and you are well within your rights to state that you can’t/won’t be your Mum’s main carer anymore (if that’s what you want). If you don’t want that, you can at least say that you need a break (whether that be on a regular basis for a few hours each week or whether you just want to go away as a one-off for a week somewhere). You absolutely have the right to request respite.
Having a break from each other will probably massively improve your family relationship.
I hope you manage to get some time for yourself- you are just as important as a human being and you deserve to be able to have a life of your own.

Thanks everyone for your kind words, they really do mean a lot. Today hasn’t been great, she got angry again and lashed out at me. I’m ok, just really upset and sore but I am trying to keep it together. I came so close to ending it all but I stopped myself, something I’ve gotten used to but the thoughts remain, I just never act upon them. I’m on the waiting list for a carer’s assessment (have been for over 6 months!) and mum refuses to have carers, saying that’s what i’m here for but when I do help it’s either not properly or in an annoying way to her! GRRRRR! I’m just glad for this space to vent and speak to other carers in a similar position because everyone I know who is aware of the dynamics between us has just given up. One of my friends said what I am experiencing is a type of abuse called coercive control and I think she is right but part of me I guess is still in denial. Obviously because she is my mother but also the cultural aspect of things (I’m of African descent and my mum is very traditional in her beliefs that strangers shouldn’t be taken care of your own). She just doesn’t see nor recognise the efforts I am making or how much her words and actions hurt me. I’d like to think things will get better soon but i’m not so sure considering my situation has been going on for a number of years. What puts the nail in the coffin is that I used to be so bubbly, so full of life, confident and ambitious. Now, now i’m just living to get by not LIVING. I dread waking up every morning, I hate who I look at in the mirror, I just wish I wasn’t here. I can’t stop crying, all I do is cry and I never used to be this person. I wish someone could take this pain away because it’s so heavy. I look t my mother and she’s not the same person I remember, she’s just full of hate and anger. I get part of it is resentment towards her health and how much it has deteriorated but I think, no I know she hates me to. She hates that i’m able to do the things she’s no longer able to do that i’m able to go out and have a life but the ironic thing is i’m not having a life because our lives have become so intertwined I don’t know who I am anymore and I I tell her that she just laughs in my face saying I know exactly who I am but I don’t. Mother always thinks I want to fight her but it’s her that randomly starts an argument with me! I’m not even 25 and I feel my life is over. I feel i’m never going to have a life of my own, date, get married, have kids, travel the world because i’d either be dead or stuck in this current never ending bubble. I’m just so tired.

Has, we CAN take the pain away and support you to reach a better place, but you still haven’t given us the basic information we need. How old is mum and what is wrong with her. First step is to tell us this, and the second is to record mum lashing out on your phone. I know she is constantly undermining your self esteem…that’s for her own benefit, not what any good mum should ever do. We have helped others break free and can help you too.

Is there a facility for Has to speak to you privately?
He may not want to put some of the more private details on a public Forum.
Obviously Has is young so will have a ‘smart phone’ on which he can record.
Not everyone uses a smart phone.
The general assumption these days is that everyone uses a smart phone ( and is not very smart if they do not :astonished: )

Hi Jas,
I am sorry to hear things are getting on top of you currently, we all, I’m sure have experienced this overwhelming responsibility and the way your caree can treat you some times. (I have a very selfish demanding and thoughtless brother)

First things first. Yourself
ASAP You need to see a GP explain everything you have here, and ask for a referral to your own CMHT and or GP can signpost you to further help, such as carer support (for you) at local authority and other services in your area,

This way you have some support for your own MH and wellbeing. This is your first step to dealing with some of your current issues. Keep posting and take manageable steps to a more positive outcome,

Benefits and services depend on

  1. Age - under 18, 18-65, or over 65, so the first step is to establish which group mum is in.
    The nature of the disability affects whether care is provided by Social Services, the NHS, or a combination.

  2. The amount of support needed.
    As a wheelchair user having spasms, then mum clearly has “eligible needs” as far as Social Services are concerned, but if her needs are very severe, she might be eligible for NHS Continuing Healthcare. To qualify, needs must be VERY severe, and it’s also easier to claim in some areas than others.

CHC / NHS Continuing Healthcare ?

Main thread :


If you don’t ask , you don’t get ???

@bowlingbun - Mum is under 50, she got complex needs, mentally and physically but she relies on me for everything. Doesn’t get out unless its for a hospital appointment. I’ve tried to do the recording on my phone but like the other day she just smashes my phone across the wall so no use. All I do is just take pics of my injuries, more for my own reference than anything else.

@karma - Health professionals are aware of the situation but since mum is refusing carers, not much they can do. GP has made a request for district nurses to pop by on a weekly basis but no one has showed up as yet. Also been waiting over 6 mths now for a carers assessment. Keep being told someone will call me but hasn’t happened.

In terms of provisions etc we’ve pretty much got those things in place (minus the odd equipment here and there) but things like benefits, wheelchair etc have been taken care of. It’s just the split personality that is unpredictable which takes a toll on me because one minute we can be in a good mood, acting like a happy family and the next she gets in a huff and lashes out on me out of nowhere and then says her health conditions are all my fault or says some really horrible things that just bring back all my suicidal thoughts.

Today’s been ok though. I just hope it lasts. I’m finding it really hard to keep myself together as a carer but also trying to reconnect with myself and reignite the passion i had for my career goals, my volunteering, all the things i used to do before mum’s health deteriorated.

Anyone got any tips?
I’m also looking to get some first aid training, or training on how to be an effective carer if anyone knows of anything in London do let me know!

am in exactly the same boat! It has got horrendous; I moved my Mum in with myself and my partner last year ; she convinced us that it was desperate enough for her she couldn’t cope alone anymore. She suffers with COPD and other health complications but these amount to sever chest infections which effects her breathing. I have been pulling my hair out trying to get Mum some mental health support as I believe she is suffering with Post Traumatic Stress disorder due to past events that I was able to successfully move on from which she seems to resent. She has recently been assessed and they agree . My Mum is also nasty and extremely difficult and she has turned our lives upside down. I gave up my job to be home with her but I cannot take it anymore. She tells lies that I “withhold care” she plays mind games with her food and makes it difficult to get her food right and then says I don’t feed her. She accuses my partner of stealing from her and me of abusing her. My partner says I need to get camera’s installed in the house to protect myself. He is ready to leave he can’t take anymore. I don’t know what to do , I can’t live in the constant fear any longer I have spent nearly 7 months afraid to come out of my bedroom. She will not respect boundary’s and causes trouble between my partner and I . It’s like her whole life is dominated by me ; she is so narcissistic everything I do and don’t do is about her . I have no life no friends left and have become completed isolated . I can only describe what she does as like I am being terrorised in my own home. She comes for me saying terrible untrue things and then eventually I snap and shout at her; it got so bad once the neighbour came round and called me a bitch for shouting at my mum. I feel terrible when I shout but I can’t get away from her and I fear things are getting out of hand. I am now afraid she is trying to get me to snap all the time so she can support her case that I am out to get her and that I am abusing her when I’m not I’ve done everything I can her for , cook clean shower her I’ve even knocked 2 bedrooms in my house into 1 for her because she complained and caused arguments over her saying her room was to small and now she is saying after 3 months of building work and stress that this new massive room isn’t working for her either ; nothing we do is good enough and we are always guilty of doing something to her . When she has well days she goes shopping buying more clothes and stuff we can’t store anywhere all her belongings are stored all over our house we can’t move for her stuff ; and then because she has done too much she gets ill again. We agree that when she feels well she should take things steady and not rush out she is supposed to pace her self but then doesn’t , it’s like she is making her self deliberately poorly so she can demand care. When she is breathless she pants and grunts really loudly it’s so loud it’s sounds as she is being attacked she does this where neighbours can hear and then will go onto to the front door step and pant and shriek at the top of her voice. Ive tried ignoring the behaviour this only makes her worse she comes for me aggressive saying how can you ignore me when I’m suffering like this but if I go to her it looks like I am hurting her it’s all very bazaar my partner fears she hates me and is trying to break me ; I’ve tried to reason with her but she just argues and try and defend myself and this makes her so angry and aggressive. I have tried with all my might to help her but she won’t take advice from me or her case workers. She is exactly the same with her case workers she hates the NHS as she has had bad experiences but she uses this as her reason for getting aggressive and combative . she just wants to fight and battle all the time. I don’t want to lose my partner of 8 years but I just don’t know how I get my mum out of my house and I feel guilty for even thinking it. But I promised my partner we would try again to make mum happy and if it fails again things would have to change. I just don’t know what to do but I can’t live with her anymore.

Reading your experience just made me burst into tears, it’s like we’re living the same life! It’s just me and my mum, we don’t have any family in the UK so when she has her outbursts I have no one to turn to. She also accuses me of abusing and bullying her and whenever health professionals come round, she says I starve her and I don’t look after her. Since she’s been ill I’ve tried to help her in the shower but it got so much that she doesn’t even want me to shower her then says i’m a bad daughter because I don’t! Everyday her behaviour just increases my suspicion of her having some personality disorder but she just refuses to be seen by mental health, saying it’s me that needs psychological help. Mum also shrieks and shouts for hours over the smallest, pettiest things and worst of all is the grudge she bears - it’s a lifetime! I truly understand she has been through some traumatic experiences in her life and then to have her health deteriorate so early on in her life, I sympathise with how painful it must feel. To watch the world go by, to watch even your daughter carry on with the things you used to do but the anger and aggressiveness when I only have good pure intentions is uncalled for. I am sick and tired of feeling this way and I genuinely feel helpless. If I walk into her room to give her dinner she gets angry because I startled her and if I knock or speak quietly I am being annoying or treating her like a child. I cannot seem to do anything right. All I get is insults and abuse and yet she seems to think i’m abusing her. Like you, I hate talking or shouting back at my mum but its when she says the most ridiculous, hurtful things to me I just can’t help. It’s like I want to shake her back into the person she used to be, the mum I remember but I can’t. All I see in her eyes is anger and I don’t know how I can change that. You are lucky to have a partner with you and by the sound of things has been understanding. Of course it must take a strain on your relationship but he must love you to continue to support you and your mum. Sometimes I wish I had someone to balance the strain. My dad isn’t in the picture and like I said all our family are abroad, it’s just really hard when trying to explain to people who haven’t been in a similar situation because all they say is it’ll get better or just endure but my mental health is at stake and as someone who has attempted suicide on a number of occasions it doesn’t make those thoughts go away, if anything they linger. Having read a lot of information on the abuse carers can receive from those they look after it seems our situation is common but it doesn’t make it ok or any easier to live with every single minute of the day.

Hello Jas

I’m sorry to hear that you’ve been having such a tough time in your caring situation. As well as receiving online support from other carers on our Forum, you might also find it helpful to contact one or more of the following organisations to talk through the issues you’ve described.

If you haven’t done already, you could arrange an appointment with your GP to talk through your situation and how this has affected your mental health.

The information section of Mind’s website contains lots of helpful information and enables you to search for support in your local area https://www.mind.org.uk/information-support/

Rethink also have 140 local support groups across the UK.

The Samaritans can be contacted 24/7 for free on 116 123. They also have an email address jo@samaritans.org

Papyrus focus on providing support to young people (aged under 35) and can be contacted on 800 0684141 and at pat@papyrus-uk.org. Their website is at https://papyrus-uk.org/

I’m glad you’ve found the empathy and understanding from other Carers UK members helpful and I hope the above information will also be helpful.

Take care


Understandably, you are feeling the strain of it all and it is having an effect on your psychological and physical health.
Reading along your postings, you say that your mother refuses carers. This - in turn - could be a reason for you experiencing delays regarding professional advice or assessments from such people.
You are struggling to cope alone with all of this and the time has come accept professional help for both you and your mother.
A starting point would be to speak to your local doctor or practice nurse about how you are feeling and also about your situation at home.
Do you receive any counselling? Having some form of counselling/therapy should help you to deal with your own state of mind and work through you own personal issues.
Leaving the house for an hour or so a week to go to therapy could be a useful start in finding a way around this situation.
If you are receiving government benefits for your caregiving duties, you may get financial help/reduced fees for private counselling. Worth looking into.
If possible, try to take some very short breaks away from the house if you can. A short walk every couple of hours may help you both by just being apart and giving each other some personal space.
Although difficult, you could try to organise some ‘me time’ - even if only for very short periods - to pursue some form of hobby, study, reading or even sitting in a busy cafe for ten minutes may help.
A conversation with the Adult Social Care services could be a good start for you in organising a Package Of Care for your mother. Hopefully, there’s the chance that you could have a discussion with your mother and a case worker together.
Someone in your mother’s situation may even admit to needing extra help when speaking to an assigned case worker.
The counselling should help you to deal with the problem of your mother’s behaviour towards you.
Talking through your feelings with a counsellor could help you to deal with some of the difficulties you are experiencing and this can be arranged through your doctor or local health centre.
Your own psychological health is under strain and - from what you have written in your posts - you really do need to look after yourself.
You have devoted so much and still feel the need to care for her. However. You have your life to live as well.
Your mother is bullying, ‘gaslighting’, applying a ‘guilt trip’…You can use various phrases to describe her behaviour.
Her illness is likely to at least be partly contributing to this behaviour. Her medication may alter her behaviour as well.
The way she is treating you, however, is in part because she knows that you are not able to get out of this situation. Bullying occurs when the person on the ‘receiving end’ cannot escape.
Your mother knows that she won’t be able to treat carers, or any other health professional in the way she treats you. It will not be tolerated.
Chances are, other family members and close friends will keep their distance because they will certainly not tolerate your mother’s behaviour. They will offer to help a couple of times, then not return. The responsibility then falls on you.
Your mother is taking you for granted and she needs to change.
Having access to a counsellor will help you to tackle the difficulty you are experiencing with your mother. You are in a situation where there are no straight-forward answers.
There’s no easy way to deal with this but please seek help via the health service and counselling.
Keep trying to persuade your mother to have access to mental health support or try to get them to visit your mother - even if she is not willing to co-operate.
This should - in turn - open new doors for you regarding the possibility of receiving further information about other forms of help and advice. Find out as much information as you can regarding further help and advice. Get in touch with the organisations.
Your mother says it is you that needs the psychological help. Tell her that you agree on that and use this as an opportunity to visit a counsellor to discuss your own needs.
Begin further discussions with your GP/health centre and continue communications with the services such as mental health. Maintaining contact will hopefully keep you on their books and on the waiting lists - rather than just being pushed aside.
Your mother now needs professional help beyond what you can give her. This is no reflection on your caring. It’s just the unfortunate natural progression of such a life journey as your mother’s.
You have done a great service to your mother and - maybe very deep down inside - she does appreciate what you have done ( and still doing) for her.