employment,unpaid carer and priorities

[Mystique23]

Sorry really long post.

needing to let it all out.

firstly a bit of context regarding below.

I have an older disabled brother that. has Down's syndrome and heart issues. My parents both have some mobility disabilities themselves and are struggling with all the care including his personal care

During covid,he got diagnosed with dementia and went downhill very quickly,losing lots of skills and several bad falls.despite having some Limited support he became very ill and ended up in hospital for 7weeks and i stayed with him 24/7 and my gp signed me off sick with sick lines stating stress and fibro due to family circumstances.

Eventually recovered enough to go into a care home permanently and was classed as end of life and receiving palliative care.

Amazingly he perked up and was doing well until this July. He asphyxiated during a seizure in the care home and ended up on high dependency due to pneumonia in both lungs. He was not expected to survive and again I stayed with him 24/7 for weeks 2 .

Within this time I had a few days off sick for myself due to my fibro being the worst it has been since being diagnosed and I was struggling due to pain.

fast forward to now,I'm on new meds,fibro under control with them and brother doing well and back in care home and I'm back at work.

I had a meeting last Friday with my managers at work regarding my absences due to looking after my brother and I've hit triggers that mean I'm now on a 6 mth probation as per their absence policy, and if there is any more absences that cannot be justified I can lose my job.

My boss is telling me I need to stop the knee jerk reaction of going sick so I can be with my brother 24/7 and I'm to contact them so they can look at my shifts to see what they can do so I can spend some time with him not constant time. I'm supposed to leave him alone so that the hospital staff can do their job of caring for him rather than me and I'm to work.(when I was there withhim they feed him or change him sometimes)

I'm also supposed to not give so much of myself to the rest of my family despite being in the unique situation of being sometimes carer for 3 people.

I've not spoken to anyone about this as my sounding board is my dad and I know he's not going to react well so have kept quiet. But it's eating me up inside as I don't know how to be the person work want me to be without damaging my family relationships and adding to my guilt as it goes against the grain of who I am.

I do understand where work are coming from because they concerned about the effect on my health but more bout how it impacts on them too.

I just feel so stuck and lost at the moment. The stress of this pressure is causing more pain again.

Sorry for the vent. Just needed to let it out. Xx

[rosewine]

I can empathise with you as before my fibromyalgia symptoms escalated I juggled work and caring for several people. I actually realise now that I gave too much of myself and made my own condition worse. At the time I was working for a charity and no one else was qualified to do my job so if I wasn't there people were let down as I was an advisor. Therefore I was very reluctant to ask for time off for caring responsibilities. Also then there were no employment laws to help out. I was also doing the job of my dreams so didn't want to give it up after working so hard to be qualified to do it.

There are so many aspects to your post eg are your parents getting the right financial help eg say Attendance Allowance so they could pay someone to help care for them? They might initially be reluctant to have someone else do certain things but if they realise that there coukd be the possibility of losing your job they would surely understand. I also saw so many carers become extremely ill themselves as they just burnt out mentally and physically trying to do everything. I used to advise the to get every bit of help they could. I wish I had taken my own advice!

I am being devils advocate here as I used to unfortunately have to be as an advisor. Even though my sympathies are with you I can also see the other side from your employers point of view. Probably although they seem to have sympathy for your predicament they are probably thinking it is more your parents problem than yours. Eg if there was an emergency situation they would be happy to give you a few days off to help deal with it but not prolonged abcenses.

I think because of what is now happening you need to contact a charity such as Carers UK who advise on all aspects of caring. They can tell you what your employment rights are. They also have an excellent website with so much valuable information for carers. Their telephone nos is 0808 808 7777 Monday to Friday 9-6 or you can email them on [e-mail]. Their website is a font of knowledge on all aspects of caring and rights but I also think actually talking to one of their advisors would help.

Good luck with everything let us know how you get on. Thinking of you in this difficult situation as I know you are being torn apart by this.x

[crochetjoy]

Oh my goodness, I really do feel for you with this ongoing situation ...I have been in your situation with caring for my mum in the past. When I look back on it, I was not well myself and didn't realise at the time.

Nobody told me or advised me to go down another route and, unfortunately, I was too close to the situation and obviously emotionally upset, as you are now.

And you have 3 people to worry about!

I would like to say to you (kindly) that I don't really think this is possible, even with the best will in the world ...

So, I would urge you to seek advice from such as Rosewine has suggested - Carers UK - as soon as you can.

I would wish for you to have as much support as you can get and a neutral adviser may be able to help you navigate through the system a lot easier than if you tried to do this yourself.

I hope things can get a little easier and less stressful for you.

My best wishes to you, please look after yourself and post if and when you are able.

[happytulip]

Are you a member of a union? A union rep would be able to support you with this and I strongly advise you get one and do not go to any further meetings without one. Many carers use Unison. All it means is that someone is advocating for you and making sure that your employers are sticking to the law. They are there to support you.

Sorry to be brief but I'm struggling a bit at the moment. But I'm sorry to hear that you've had such a terrible time of things. You must want it to just all stop piling on top of you.

From what and how you write it does sound like your employer is trying to put your well-being and circumstances into consideration by saying that they would review the rota if you need time off so I hope the situation is resolved.

[Evonne02]

You need to think of you first. I understand your loyalty but if you're ill or unable then it's all going tits up for you all. Look into social prescribing, call social services, call the housing if your parents rent their home, call help the aged, call CAB, call your local council. Look for help via local charities relevant to your brother and parents issues. Theses are things your parents/social services should have done, not leave the onus on you. You will see what i mean when you start researching and contacting the above. Your employment is important and the basics of your life, your home and career prospects. Carry on like this and your reference for another job, although truthful will not bode well with potential employers. Its time to think of putting yourself first. I've been where you are and worn the t shirt and couldn't find emoyment in the end.

[Midori]

OK, what work do you do?

Do you have a Union; if you do, join it. Gives you some protection. Also get some advice from ACAS.

Are you on PIP at all? Could you ask your Doctor for a letter for your work, explaining the whole thing, perhaps?

As a carer for 3 people, that's some workload, as well as trying to work yourself.

Have you asked for a referral to Occupational Health? They could possibly help, with advice or getting you some adjustments to help with the Fibro whilst at work.

Do Not Quit. It will bar your from Claiming Jobseekers, or whatever it is now for up to 26 weeks, as they will say you made yourself intentionally jobless.

If you do get PIP you are protected by Two laws , The DDA and The Equalties Act.

Hope this helps a bit.

Cheers, Midori