OK, what I’m about to write and what you’re about to read may sound selfish, but I can’t fight these feelings anymore. For the past year I have been a carer for my sister, who has epilepsy and Autism, she also has the mind of a child and acts very childish. She is 28, so she’s actually my older sister, but doesn’t act like one, although she understands that she is older than me. Anyway, I have no life, no friends, no girlfriends, no job, nothing at all really. I still live at home with my mother and stepfather, who both go out to work. For the past few weeks, I have been getting more and more depressed, wishing for a better life, that I know will never happen. I used to think that money was the key to success, but now I know that it’s freedom. I can’t do anything on my own, or even leave my own house, because my sister wants to stay home controlling the TV in the living room and not letting anyone else watch anything, without moaning about what they are watching. She has to watch the news everyday at precisely the same time, or her schedule is messed up. I like to drink alcohol, more than I should, but it’s my only way to escape. I do have two other sisters, both of which don’t live with me and has own lives, with their own careers. My mother tells me that if I’m really depressed, she’ll give up work and I’ll go out and get a job, but then I’d feel guilty as she wouldn’t have any money for herself and my eldest sister tells me that I don’t help myself by getting angry at the mood swings of my sister, who can get very violent. I hate my life and think of either two things, my death or a fantasy life, which I know I’ll never have. I don’t know what to do, everyone else my age or younger is out living a better life and having a good time and I’m just stuck at home, living a prison sentence, that never ends.
Sit down with your family and tell them what you want. A life. The fact that you are depressed and drinking indicates that it is too much. You need your own life as in the long run that will be the healthiest thing for you. I’ve been a carer for over 22 years. I would not choose the same path again.
You are not responsible for another person nor should you be.
Hi Anthony,
Welcome to the forum.
I’m not surprised you are feeling depressed, staying home all day caring and not working and socialising.
You say you have been caring for your sister for a year, what did you do before that?
Who cared for her before you?
Does she receive any additional support e.g. attend college or day services, go to any clubs, have paid carers/ befrienders take her out?
Melly1
Hi Anthony … a kinship carer ?
Just in case you need it , a separate thread on kinship carers … slightly different parameters when compared to family carers.
https://www.carersuk.org/forum/news-and-campaigns/latest-caring-news/kinship-and-or-family-carers-guidance-news-articles-support-31009?hilit=kinship
Occasionly , there is a card to be played which is unavailable to family carers.
Get another TV!
Then, if sister cannot be left alone, get paid carers for her or supported living etc. It doesn’t have to be YOU
Anthony,
You should NOT have to put up with violent outbursts. If you have a mobile phone, film her when she is having a meltdown, as evidence.
What do your parents do when this happens?
Your sister should be referred to the Challenging Behaviour Team at Social Services.
Doe she go to any day services, clubs etc.?
Have your parents made any long term plans for her, or do they think they will last forever??
My own son was brain damaged, is now 40, by the way.
Have your family had a carers assessment? If your are carer for your sister are you claiming carers allowance?
.
Just tell them that your life is standing still because of your caring role. This standing still is bad enough for someone in their 40’s 50’s or 60’s let alone someone who is 24!
I’m really sorry to hear about what you are going through. Other members on this forum have come back with some suggestions, and I’d also like to take the opportunity to add a few too.
Has your mother been in touch with your local council to access support? Under the Care Act in England (and other legislation if you live in Scotland/NI/Wales) carers are entitled to annual carer’s assessments through which a nominated carer could be entitled to support if you meet the national eligibility criteria. Your sister should also have had a needs assessment to understand her needs for care and support.
It sounds to me as if you would also really benefit from talking to someone outside your family. If you haven’t already spoken to them, your GP may be able to provide you with support. There’s a charity called Calm who you can call for free on 0800 58 58 58 between 5pm and midnight 365 days a year. They also offer webchat, as it can sometimes be difficult to verbalise what you are feeling or make a call in privacy. There’s also The Samaritans who can be contacted 24/7 for free on 116 123. They also have an email address jo@samaritans.org
Once again, I am really sorry to hear about what you are going through. I hope you find the support you need and deserve.
Links to key websites are below:
Hi Anthony. I’m 30 in June and working full time whilst caring for an elderly relative. He is often abusive especially towards my wife including being physically imposing, touching her inappropriately and trying to whip our cats with towels. He is always suspicious of us and what we’re doing or saying.
We have one shelf in the fridge that we can use and that is it. Even then he still often eats our food that we have been saving and looking forward to. This is absolutely killing us and we’re looking at moving out of the house and onto a narrowboat.
I really feel for you and for other carers who are left in this horrible position. Every day you are living in an atmosphere of old age or sickness and death and it infects your thoughts turning you into a mental prisoner thinking ‘who will care for me when I’m old? Will I be like this one day?’ etc etc. We are at the end of our tether right now and just can’t wait to get out of here.
Bjarki,
That is NOT ACCEPTABLE.
Reading through your email, at least two CRIMES are being committed by the person you care for.
Sexual abuse - yes, even touching!
Animal cruelty.
Forgive me if I am wrong, but your name suggests that your family may originate in a different country?
In the UK, our laws apply, regardless of what had to be tolerated elsewhere.
Tell us a bit more about the person you care for, age, disability especially.
Have you ever asked Social Services for a Carers Assessment, for you and your partner?
Has he ever had a Needs Assessment from Social Services?
Is he claiming any disability benefits?
Hi Bjarki. I am so sorry to hear about your distressing circumstances. I can imagine this must be a particularly difficult time for you and your wife.
For emotional support, you can contact Samaritans. Samaritans is available round the clock, every single day of the year, for anyone who is struggling to cope. You can contact them for free on 116 123. You also might want to consider getting in touch with Victim Support. Victim Support provides confidential emotional and practical support. They have a free support line available 24 hours a day and can be contacted on 08 08 16 89 111. Are you in touch with any local carers organisation at all? You may find it useful to find one closest to you. You can use the directory on our website here: Support where you live | Carers UK
Regarding your wife, it is important that you or your wife speak to a specialist helpline such as Women’s Aid which is open 24/7 and free. Their number is 0808 2000 247. Victim Support is another organisation that you can call.
Once again, I am really sorry to hear about what you are going through. I hope you find the support you need both on this forum and elsewhere. Other forum members may have other suggestions too.
Hi Anthony,
I know how you feel. I am now 25 and have no life of my own. I look after my younger brother 23 who has a Brain tumour and Epilepsy.
Life is cruel and ridiculously difficult but we keep going anyway. One thing I have learnt is my resilience is ALOT higher than everyone around me which is something we all have as Carers and should take pride in it too.
We have no family, it’s me and him against the world and the fact you have a fairly big family I would sit down with them and have a discussion with all of them. There are SO many options available to you all! I would even give Carers UK and Epilepsy Society a call to see how they can help.
You might be able to have support provided so you can work part-time - then it gives you a middle ground between what life throws at us.
My own wellbeing is something I really suck at, but I’m learning as much as I can. If we don’t look after ourselves, how on earth can we look after others! Sometimes we just need something that is ours and no one else’s. You need to find that something.
As you are the primary carer for your sister, look at getting her PIP (personal independence payment) - it’s a lengthy process and you need to find local support to fill in the forms with you both but it’s totally worth it. Once she has been awarded, you can claim Carers allowance! DEFINITELY look into it.
Remember, keep going! You’ve totally got this.
Jey, that’s a huge amount of responsibility for such a young person.
Have you had a Carers Assessment from Social Services? Has your brother had a Needs Assessment in the last 12 months?
Trust me you are not being selfish! I myself am 25 and have been in a similar situation to you. For years I have stopped myself from doing what I wanted and it has destroyed friendships and even potential relationships. I always felt guilty if I didn’t look after my mum because quite frankly my family weren’t stepping up to the plate and my thoughts were always if I don’t then who will. I now realise I should have dealt with my situation a lot earlier than I did and I probably wouldn’t have been depressed. It will be tough but you need to have an open and honest conversation with your family because your life and existence matters too.
Anthony, my son M is now 40, he has severe learning difficulties. He will never get better, because he is brain damaged. Your sister will never get better either.
M now lives in his own flat, with carer support.
It was a tough decision, but one day I know I will die, and so it was really important to make arrangements while I still can.
Your sister will have to move out when you die too. She and the family CANNOT force you to care for her. Every day you avoid saying “I won’t care for her any more” is a day of your life lost forever.
How come you ended up looking after her in the first place?
Where are your parents?
My son is 2 with a moderate physical impairment. He has his own room because I do not want to spoil him more than needed. He currently sleeps with his twin sister. We also are working on him being independent in the bathroom. I have placed some toys in there for him to play with if he gets bored and some children’s books. It is hard but it will benefit our family in the long term. Can you ask for a assessment to be done by your local social services team or not?
You might find this guide helpful- Social care and support guide - NHS
How are you doing today?
Hi Lizzie trying to click on these links at the bottom of the first page:-
Links to key websites are below:
Carers Assessment: https://webmail.carersuk.org/owa/redir. … assessment
Needs Assessment: https://webmail.carersuk.org/owa/redir. … assessment
Calm https://webmail.carersuk.org/owa/redir. … one.net%2f
Samaritans https://webmail.carersuk.org/owa/redir. … CgQAvD_BwE
But it says I have to sign in to Outlook Web App, name and password, I don’t know what that means user name and password, I don’t have a user name or password.
Can you help?