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Feeling Lost - Carers UK Forum

Feeling Lost

A place for those 18-35 to chat about all things caring.
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 :o )
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 :

https://www.carersuk.org/forum/support- ... read-35998

If you don't ask , you don't get ???