New here, but struggling with caring

Hi Everyone,

I have become a carer in December, for my 18 yo sister. She has got a lot of problems, schizophernia, depression, anxiety, scoliosis, hydrocephalus, vision problems (glasses cant fix it, already tried that, awaiting on specialist referral) this is not all, this is just to name a few. Currently she is in hospital sectioned, thats 30 min drive from my home (13miles each way). Hospital is building up her leave to discharge her to home (she is coming to live in my home).

I work full time in lab as a lab tech in an R&D setting. My boss is making me feel like she wants to get rid of me because of this. I do good work, and whatever is asked of me, might take my time but that is because I am burnt out. I asked for flexible time/part time contract like many others in the company have, but was rejected saying no one can cover the work.

I also have a dog, that needs attention/time/walking, my boyfriend lives a 20 min drive away. He is understanding and has been very helpful and helped me lots.

Not sure what to do or how do people have a full time job and care for someone? Its like theres not enough time in a day.

Thank you all, and sorry for the long rant

I have cared for many family members.
My youngest son was brain damaged at birth.
I honestly believe that your sister needs more care than one person can provide.
How did you end up being carer?

I don’t have any answers relative to your situation but I have some suggestions.

You cannot work full time and care for your sister, that is not feasible.

The hospital should be asking questions prior to discharge - if any special equipment is required at home, she cannot be discharged until it is there/operational.
If she requires extra care at home, she cannot be discharged until it is in place.
Without these it is an unsafe discharge.

Ask what care requirements your sister needs at home
Tell them you are in full time job, you cannot be home 24/7
Tell them you need to sleep through the night so you can work and you are not doing so and it is affecting your ability to work and your performance at work.

Does your sister have a social worker? Ask your local authority for one, get needs assessments for your sister and yourself. They should be on your side to prevent unsafe discharge, tell them about your sleep issues and work.

Your employer should recognise your being a carer for your sister and there should be some workplace allowances and dispensations, you could try going straight to HR about it? It is a corporate issue because it is the company who has to be compliant with this for you.

Remember you CANNOT be forced to care for anyone, not even a wife for a husband.
Hospitals are awful at making assumptions and applying pressure just so that they can “get their bed back”.
Your sister has no right whatsoever to live with you.

As she was only living with you for a short time, and was then sectioned, what happened, and what is the likelihood of this happening again?
Do you know what sort of “section” it was. Some come with a lifelong entitlement to free after care.
Make sure you know more about her section.
It’s very sad, but if she moved in with you, how would you ever maintain a relationship, get married, go on holiday, have children?
How are you going to feel if you have to give up your career, then she dies early, so you are left with no income, no partner, no career?
What would happen if you became ill?
I know I’m coming over as very negative, but there is a reason for that. The stress of caring for our son and all four elderly ill parents was a major factor in my lovely husband dying of a massive heart attack. At 54 I had major surgery, and was told never to care for anyone ever again. I was told “20 years without a holiday didn’t do you any favours!”

Are you in touch with the local Social Services team. If the hydrocephalus has led to learning difficulties, start with the LD Team and ask about “supported living”. Your sister could have a flat or live in a small group home so you could see each other as much as you liked, but there would be a team of carers to give her all the support she needed, day and night.

Bowlingbun has made a lot of valid points.

Sibling love and care is immense in a close relationship and living your own lives is a key to that

If your sister qualifies for the independent living as mentioned by Bowlingbun you can have the best of both worlds, your sister is being properly cared for, having her independence and you can see her, watch her back and be sisters. That is win-win.
If your sister did not have these issues, you would be living your own lives, going your own ways in life and sharing some good times together, so you are helping to find the best independent living for her to live to her best potential.

There are three major important factors
The full and proper care for your sister to have her best independent life
The full and proper care for yourself to have your best independent life
Your ongoing healthy sibling relationship for life

I do hope you are able to get that and then you can catch up on your sleep, improve at work and look around for promotions or another job to move onto where they are more deserving of you, or have a more stubborn mindset to stay because she will be promoted or moved on soon!

If your sister hasn’t got a social worker please get one urgently. For an urgent needs assessment.

That woukd be three full time job roles looking after her 24/7.
In reality covered by 5/6 staff on rota.

Impossible for you to do and hold down a full time job.

Social workers can look into supported housing for her.

Accepting her home is a slippery slope where you will lose yourself, your job and your own physical and mental health.

I have to agree with the comments made especially those by Breezey and BB. The sad reality is that care needs tend to increase not decrease. YOU deserve quality of life too, however much you love your sister, I would beg you not to sleep walk into becoming a full time carer. The ‘system’ will encourage you down this route rather than suggesting viable alternatives. I also agree that it sounds as if she needs far more care than one person can possibly provide.

It is not a long rant Yasmin, it is asking for help.

The answer is that there isn’t enough time in the day, you can’t do full time job and full time care, you cannot split yourself into two or the multiple beings necessary for this.

I hope you take on board all the replies to you and that your sister can be placed in an assisted living accommodation, Cloudygal and Helena are right that you should be on your guard not to end up conned into having your sister back home. Yes, you grew up loving and caring for your sister, doing your turn for her and you want to look after her, but you know you cannot do it and hold down a job.

Flip it around, you are watching her back, you are looking after your sister by giving her an independent life with the proper care that she needs, not leaving her in your living room alone and lonely while you are working.

Stand your ground, tell them -
it is an unsafe discharge for her at your home
it did not work with your sister at home - she ended up sectioned
it is not safe for her at your place because you are are at work and you need to sleep at night
your sister will be alone and lonely, unsupervised and prone to danger
your sister cannot stay with you in the interim of them finding a place for her,
no, you cannot do it on the grounds of her safety.

I have refused the discharge of my mother from hospital a couple of times, I had a few different departments from the hospital phoning to bully me into taking her home and I stood resolute, told them not to bully me into an unsafe discharge because I will make a formal complaint and I stopped answering my phone to end the relentless circles of them trying to bully me into submission.

Be strong.
Stand firm.

Let the phone go to voicemail! Listen to it and think about it or get advice before returning the call or speak with the social worker first. If it is another bullying call for you to take her home, ignore it - don’t feed the trolls, you are getting social worker to do the assessments and find a place. Do not cave in and have your sister at your place, don’t fall for any emotional blackmail.
Don’t let them tell you that home is the best place for her, it isn’t safe for her, you are at work.

You are doing the best thing, working for the best life for your sister and in turn for yourself.

Put it in the hands of the social worker.

Keep your manager informed, what is happening, that you are getting a social worker to take on her case and get her a placement in an assisted living accommodation.
Hopefully that will appease your manager that you will be back to 100% on the job and not split between your sister and work and/or taking liberties with time keeping to see to your sister, you have too much integrity to do that but the manager might be thinking alsorts.

If you are in a union at work, have a chat with your union rep if you get concerned about things.

Many employment contracts state that you must be in a fit state to work. If you are too tired to work because you are caring for someone, then you are in breach of or in frustration of contract as you are unfit for work. Many contracts do not allow moonlighting - extra work, your caring for your sister could also be seen as that.

Good luck Yasmin, get that placement for your sister, set her up for her best life and be assured that you are doing your utmost best for her as her loving, caring and supportive sister.

If no one is listening to you at the hospital (they may have “selective deafness”!) ten if all else fails ring the hospital, ask to speak to the Chief Executive’s Office, and speak to his/her PA, and especially use the words “unsafe discharge”. I’ve had to do this a number of times, and it works better than anything else.

Basically, because staff know that the CEO is their ulitimate boss, and their own promotion prospects could be harmed!

No need to apologise for a longish post, we need to understand the situation, and most of us on the forum found it when we were also in a state of crisis. Everyone here is on the side of the carer.
To many medical staff our own lives are of no concern whatsoever to them, they just want their bed back.
You can tell them you understand this, but the quickest way to get their bed back is not to be nasty to you, but to work with Social Serivces to find a long term placement with 24/7 care!
Social Services have been given a lot of money to do this work.

Yasmin I hope you are feeling empowered and ready to take on the world for the benefit of your sister.

Google your local council authority for social workers / social services
or phone your council and ask for their office number
Phone them
Tell them

If the hospital start phoning you to take your sister home - no matter how nice, friendly and encouraging they are that she is well and can come home or how bullying and insistent they are for you to take her home, don’t do it - hang up - you lost the call! don’t answer when they phone back. Or say you have to go and hang up then don’t answer. It is no different to saying no to gravy on your plate if you don’t want it or declining an invite to go out, you have the right not to.

As Bowlingbun said they are paid a lot of money to provide accommodation and they will not allow an unsafe discharge to your home.

You have the power Yasmin.
Let your supercape flow as you take on the charge forward to provide for your sister.
You are her superhero.

Thank you Everyone! Its very useful advice, you have given me! I never had to look/help someone let alone with physical and mental problems. Yes I will say that in the next meeting about this. The leave hasn’t gone well either, she does need 24/7 care and cannot be left alone for literally 5 min. Due to mentally being so unstable and volatile.

I noticed you guys asked me how I ended up looking after her, physically she isnt too bad, thats easy to manage. Mentally the nicest way to put this I have never seen anyone as bad as this. Currently on section 3, her section 2 is finished. She is a half sister, she got a different mother, so she lived her teenage years with her mother. At 18, my sister begged me to take her on, she always asked to live with me, but I was a student so couldnt help at all. I agreed last year, just because none of the family is willing to look after her, other than her mother who caused much of these mental health problems. When I picked her up she was already in psychosis, it just took 3 days to get a bed at the hospital. She had no record of any mental problems thats why I had to take her 3x to a and e so she can get admitted.

How she managed before that I will never know. She did go a long way from where she was. (Basically my 2 year old dog had a better life than my 18 year old sister). Like her soul is broken and gone.

Like some of you mentioned, what if something happens to me, yes that might be a big issue, my lungs and heart arent the best, this stress isnt doing me much good either. I will take your advice on board, thank you again.

Surely she is simply “unfit for discharge” at the moment?
Before she goes anywhere they must stabilise her and then maintain that stability.

Ah so being a half sister, it’s not so close as growing up together.
She needs 24/7, you cannot give her 24/7 at home.

I hope you have seen Bowlingbun’s post above.

As your sister is only 18, when did she last attend school or college?
She should be entitled to more full time education.
Has anyone considers this?
I was advised to keep my son in education as long as possible. He left college at 22, as a young man able to look after himself and his belongings so much better than when he left residential school at 19, where he had a key worker to support him for everything. In fact he learned a lot and matured a lot between 20 and 30.

It is just a suggestion but your sister is so very young and surely should be getting more support so is it worth contacting the MIND helpline? They are a mental health charity. I totally agree that you must not have your sister living with you however much you love her, and want to support her. It does sound as if she has been let down very much by the NHS but it is not up to YOU to pick up the pieces, all you can do is try to offer a safety net by getting help put in place for her. If she has been sectioned, then frankly she will need more help than you can give however caring you are. (and btw you come over as mega caring). Wishing you all the very best and please let us know how this progresses.

Thank you all again! We did get for her a place in a rehabilitation hospital, where she will be taught independence. I am not sure about all the details, but I am aware she will be taken out, into the community and to college by the staff there and will get taught life skills like cooking and keeping herself safe. Its been a lot more help since I said those words to the hospital that I cannot and will not look after her in this state. Tomorrow fingers crossed is transfer day. :smiley: :smiley: :smiley:

Good news.

That’s great for both of you.

What then after her rehabilitation?
Where does she go once she has those skills?
Will she be in assisted accommodation or are they expecting you to take her home?

You have a great result and you have time on your hands for social worker and needs assessments to get your sister in assisted accommodation for her to have her independence.

Not sure what happens after this rehab hospital, but she is still sectioned till July, still in a hospital and is currently on observations by 2 staff at all times. Extremely suicidal for the past month. I honestly doubt she will be out of hospital this year.
I am going to listen to all of your advice and let her get her own life. Its better for everyone involved.

We are here whenever you feel the need for support. It’s been a very stressful few months for you. I hope you can now manage to take a short break.