Feeling Lost

[Jas_1809]

@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!

[Cass_1906]

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.

[Jas_1809]

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.

[Michael Carers UK]

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.
https://www.rethink.org/help-in-your-ar ... rt-groups/

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

Michael

[Paul Shipman Smith]

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.