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Carers UK Forum • In need of help & advice please
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In need of help & advice please

Posted: Sat Feb 15, 2014 5:36 pm
by Raenbow
Hello, I'm new to this forum and I'd just like some advice with my situation, please.
I'm 25 years old, and I have been caring for my 45 year old mum, and my 10 year old brother for over a year now. She has end stage COPD, and because of that is on oxygen at home and is (most days) bedridden. Up until a year ago, I was at university, had moved out and was living with my boyfriend and life was good. I'm finding it extremely difficult to adjust to spending my days and nights with my mum and brother, and have no social life anymore. Friends seemed to stop inviting me out because I don't really have the time anymore, and I feel like a failure because I couldn't complete my degree and have the career I'd always wanted. I struggle in social situations because I feel so detached and alone, and I'm staying indoors more and more. I can't invite friends over because my mum complains that she is too tired for people to be here or she just doesn't want it, understandably. She is extremely angry at her situation and that she can't live the life she wants to with her son, which she takes out on me a lot. She pressures me every single day to spend time with my brother (which I do, but it's a struggle because he is so hard to deal with as he is angry and upset at the situation and feels I am "taking over" our mums place).
I have a lot of pent up anger at my situation because as a child, I lived with my grandma and wasn't taken care of by my mum, and now I resent that I have given up the "prime" of my life to take care of her. I can't do any of the things I want to (I.e. University, have my own home, have my own children with my boyfriend, etc) as we live in her house. She complains that I never do anything right, she is OCD-level clean (or was, when she could manage to run her own home) and nothing I do is up to her standard. I love my mother with all of my heart, but I'm growing to resent her. It upsets me to even think about it, because I feel like a failure of a daughter. I am terrified of losing her, because I feel like she IS my life, and I don't know how I'll be able to get my little brother through it. I am awoken every day to my little brother screaming abuse (he hits, punches, barges and verbally abuses me every day- and I don't know how to deal with it), or to my mum screaming me to come and get him because he won't listen to a word she says. By the time I've managed to get everyone to bed and settled it's 11pm, and then I'm off to bed myself so there's never any time to see anyone for myself. I've been taken into hospital previously after trying to overdose (prior to caring for my mum) so I know that it's easy for me to slip back into depression. Sometimes I just don't know if I'm the right person to do this. I end up in tears most days because I feel I can't do this anymore. I just don't know what to do.

Re: In need of help & advice please

Posted: Sat Feb 15, 2014 6:02 pm
by crocus
Raenbow I really feel for you and can feel your frustration. You really need to get onto social services and tell them that you cannot do it any more. No-one says that you have to care for them - you need to talk to social services to get alternatives organised. Carers are not slaves and you sound very much like one.

Getting someone else to do the caring is not an admission of failure, so dont feel guilty.

Re: In need of help & advice please

Posted: Sat Feb 15, 2014 6:56 pm
by bowlingbun
If mum has end stage COPD find out more about "NHS Continuing Healthcare". She may be eligible. You can't sacrifice your whole life or you will become bitter later.

Re: In need of help & advice please

Posted: Sat Feb 15, 2014 11:21 pm
by jenny lucas
Absolutely agree with Crocus and Bowling Bun. This is NOT something you should be coping with on your. Because of the presence of your brother (is he your full brother, or your half brother, given the 15 year age gap?), this must surely, surely be something for social services etc to be involved with? I take it that neither your father, nor your brother's (if different) are in evidence anywhere?

Forgive me, but I don't know enough about COPD to know just what 'end stage' signifies? Is she now entering the final phase of her life, and if so, how long will that be? I'm sorry to ask such a blunt question, but really, it is the most important one in this very, very difficult scenario, as, if she dies before your brother reaches his majority (or sixteen at the least) then there must be firm and clear and acceptable arrangements in place for his guardianship.

Also, it is abundantly clear that he is not coping well (understandably!) with this very painful situation. May I ask if his school is aware of the situation at home? If not, they should be made aware immediately, so his teachers understand that he is not in a good place in his head, and they, too, may be able to initiate the pastoral care and support that this poor lad so clearly needs. (My own son lost his father to cancer as a schoolboy, though older than your brother, so I know that it takes a great, great toll.)

I absolutely understand and sympathise intensely with your frustration and resentment that your life has been hijacked by your mother's illness, and the fall out from it. Were it not for the existence of your very vulnerable brother, I might say that, in my own personal opinion, nothign more than that, that some kind of distancing from your mother might be advisable, to give you at least some degree of independence. But because of your brother, I feel that maybe you do have to 'step up to the plate' for HIS sake, though quite what that should be, and can be, I'm not sure.

I can't help but feel this situation is SO difficult and can only get more so, that real professional help and intervention and support is needed. Your family can't just be 'left to cope' with you, a young woman of 25, a highly vulnerable and distressed little boy, and a mother who, let us say, has more issues than just her physical illhealth (though doubtless that is contributing in a major, major way, but it does sound from what you say that there are other factors going on here anyway, eg, her OCD, and the fact she did not bring you up herself)

As I say, I do feel, speaking personally, that the most important person in this situation is your young brother, and then you, and then your mum. (Though perhaps there are more tragic reasons for her situation than I am assuming!). Is your grandma still alive, and if so, can she help in any way, even if that's more emotional support than practical? Or any other relatives?

Are you getting ANY professional support, or have you just been 'dumped' and left to get on with it as best you can? Even if you are getting some support, it's clear it's not enough, certainly not for your very troubled young brother.

With kind wishes in such a difficult and painful and frustrating situation for yourself, Jenny

Re: In need of help & advice please

Posted: Sun Feb 16, 2014 10:22 am
by Dancedintherain
Welcome to the forum.

Re: In need of help & advice please

Posted: Mon Mar 03, 2014 2:06 pm
by Raenbow
Thank you all for your replies, and I'm sorry for not responding sooner. I felt a pang of guilt when I went back down to my mum after my last post. I saw her sitting there alone, with nobody for company except me- who doesn't even want to be here- and it upset me for even considering not being the one to care for her.

Jenny-
My dad passed away when I was 9, and my brothers dad is (embarrassingly) in prison. Yes, you can imagine that there are a lot more issues underlying here than what I have stated…
End stage is an odd thing in COPD, there is no 'time limit'… My mum could continue like this for years, or she could get an infection tomorrow and that could be it. MY mum has decided that if anything were to happen to her, it would be me who would be my brother's guardian. His school are aware of the situation at home, and he has received some counselling at school, although I'm not sure how well this has worked, to be honest. This last week I've seen a major improvement in him (he went to some martial arts classes and I think he's found it really beneficial to be able to 'vent' somewhere). So, fingers crossed on the brother front. Before I began caring for my mum, we had quite a strained relationship and I had tried to distance myself for years from her, but I could never stop caring for her and worrying about her (she has struggled with addictions throughout my whole life, which is why I wasn't really brought up by her). My grandma lives two doors away, but struggles immensely seeing her daughter in the state that she is, and I feel that although she does sometimes keep my brother overnight to give us a break, she runs away or buries her head in the sand where me and my mum are concerned (as I mentioned, she lives two doors away but very rarely comes to our house, even to sit with her daughter and have a conversation/cup of tea).
Bringing me up, my grandma had fully sacrificed herself, her life and her own dreams for her selfish adult children (I won't go into detail), but I think she expects the same of me. I also have to take my grandma shopping, give her lifts in the car wherever she wants to go, and also my uncle (who still lives with her, and also 'has COPD' and 'needs a carer'…).
My grandma is too emotionally invested to give emotional support, and is too preoccupied busying herself with everyone else's needs (her sons, her other grandchildren, etc.). I've sort of given up hope on family and their help… Back before I cared for my mum and I was applying for universities, I got an interview from a very prestigious art school in London, and I was over the moon. I arranged all of the travel to get there, and had asked my grandma to make sure I got up to go for the train (I had to be up at around 4:30-5:00AM). She never woke me up, despite being up herself. She said that she didn't think I'd really wanted to go, and that London was far away. Despite her telling me all my childhood to do well, get out of this place and follow my dreams, she didn't really want me to go. She was scared of being left with this family alone. Which is where I've ended up. I can't blame everyone, I just feel like everyone contradicts themselves. They want to help, but don't want the repercussions.
Sorry to keep blabbering on!
My mum is in touch with a hospice, who have arranged small things, like if my mum needs a break, she could go stay in a hospice for a night or two. But she wouldn't do that, and I can't blame her. They've also arranged for my brother to be able to speak to someone soon, too, and they were the ones who got him involved in the martial arts stuff, so we are receiving some help.
I'm not sure if I mentioned, but I've always struggled with depression and anxiety and since caring for my mum, the isolation from my friends and a 'normal life', I can barely look people in the eye when (IF I HAVE to) go outside. I'm so ashamed of my life and the person that I am, that I can't join in a conversation or socialise normally anymore. I don't want to see friends because I'm worried that I'm so disconnected from normality. I'm in a strange place where I long to be free and sociable, but I feel like I can't and sometimes I'm so far down that I don't want to anymore or I'm scared to.

Re: In need of help & advice please

Posted: Mon Mar 03, 2014 4:16 pm
by crocus
Reanbow ((((((hugs)))))))) No-one can do what you are doing for long - you will burn out. In fact I would say that you are already close to it. Im sure your mum would like to do everything and knows how to push your buttons to make you, but you cant - no-one can because we are none of us superman/woman.
May I suggest a couple of things? Firstly, go and see your GP about how you feel. I know you are on anti anxiety meds, but perhaps they can be tweaked a bit to help. I would also recommend counselling for you.
Secondly I would ask social sevices for help so that you are not doing everything yourself. I would also try and get your mum to go into the hospice for a couple of nights - or even one - regularly to give you a break. I know your mum doesnt want to do these things, but if you end up burning out (a quite likely outcome if you dont do anything, I would say) what would she do then?
Thirdly DO NOT BE ASHAMED OF WHO YOU ARE!!! yes I am shouting - to make sure that you hear me! You have done wonders in coping with things that the average person your age has no idea about. You are stronger than you think. If you want to start practising conversations and socialising, you can always practise on here. There is a social section that you can join - just jump into the conversation, we dont bite. Many of us have made good virtual friends who are very supportive and you might find it a way to get your confidence back.