Devastating news - does anyone know what I can do about work?

[Whistlersofskye]

My father has been diagnosed with a brain tumour and will need surgery and chemotherapy. He lives alone and I’m an only child so there isn’t anyone to help care for him.

I work full time, office based but could potentially work from home if allowed. I need to be around to care for him, is there any kind of law on my side that says I can work from home to be around for him (I’d move in with him) or maybe could I have time off to care for him? Is this usually unpaid?

I work for an employer who isn’t very flexible or family friendly so I know there’s no way I’d be able to just do this unless there is some sort of legislation that will work in my favour.

The other option will be to get carers in but my father has no money and I couldn’t afford to pay for them. Not sure if they’d be NHS?

This news has come out of the blue and I don’t know where to start. Would MacMillan be of any help with this? Any advice would be greatly appreciated

Kindly if he has a brain tumour you’re not going to be getting any work done as it’s overwhelming looking after them. I know if did it for my late husband. I just left work and didn’t go back for 6 months and I was very lucky as they paid me full pay.

My gran has just died of cancer. I dont know about the laws wrt work but she had fantastic carers paid for because of the cancer (if it was just old age she/we would have had to pay). The local hospice was a fantastic support for her - i would get in touch with Macmillan and any local hospice you have to ask for advice and see what support is available.

I’m so sorry to hear this. My friend has a brain tumour (not the primary cancer) and she wasn’t able to be left alone at all, she had to move in with her daughter. I manage several teams and i’d have no problem at all granting you 3 months WFH and review after that. But I am flexible, i’ve had a lot of crap happen to me so am very understanding. Sounds like your employer isn’t. I don’t know about any laws, but if you have a union rep maybe worth a chat before you put in a request for flexible working.

I'm so sorry op. I've cared for both my parents through terminal illnesses honestly even if your employer was flexible I would say your best option is sick leave, at least initially until you can establish how he is coping and if he would need carers.
Surgery recovery and chemo can throw up lots of unexpected events illness, infection, appointments kindly you will be unlikely to concentrate on work and taking calls - caring can be stressful and exhausting. I wish your dad a speedy recovery

@Whistlersofskye , May I ask the nature of the brain tumour? There are many types and require different treatments and after care.
Rest assured that if they require post operative care beyond hospital, then the NHS/social care will step in but you need to be super strong and say that you cannot and will not care for them.
Wishing you well for the tough road ahead.
My Dad was originally diagnosed with a huge brain tumour in the late 1980s, he is still going strong at well over 80 (after three surgeries) - but this was his brain tumour and might be very different from your father's. I also have friends with much poorer diagnoses and different needs.

Your employer might offer some carer type leave plus additional compassionate leave.

My DM had a brain tumour, operation and chemo - the chemo was intensive so she was in hospital for weeks after, so it would be a good idea to find out where he'll be having chemo/how frequently and how long he will stay in for.

You can also take sick leave with stress if you are having to manage work and scaring role to a potentially terminally ill loved one. It can be an overwhelming task and I hope your work is as accommodating and flexible with you as possible.

I work part time, public sector. Only child with just mum alive, living 220 miles away.
When mum had cancer two years ago I had three months off to care for her, given by the GP a month at a time, written up as Stress at Home. She had other severe illness before the chemo which delayed treatment. I couldn’t have managed it all due to the distance. Nobody else to care for her.
She fell ill again two months ago, with a return of the cancer and concomitant illness. I have had 9 weeks off work and am back this week. She is going to move to live near me as the cancer will need further treatment.
Line manager is excellent and understands my predicament fully. I never take time off without good reason, so they know I’m not taking the piss.

I'm sorry to hear this. Factually there isn't any law that says you can just have time off to care for him. Your workplace may give something in the way of dependents leave (I can get paid leave when my child is sick), but your workplace doesn't have to give it paid or unpaid and can limit the amount you are allowed. Working from home is a good idea, although again they don't have to pay you to care for your father, so if working from home is being there if something goes wrong etc, then that should be ok, if working from home becomes stepping out every few mins to help your dad, then you need unpaid leave, unless they give paid carer's leave.

See if you can take some leave while he has surgery. (Work may insist this is unpaid or they may pay you.) Then work out what care he may need going forwards. It is potentially going to be easier to get carer support (paid for if funds are low) for him, then paid leave for you. Look at whether there are any local organisations that run day care that your father might be able to make use of.

Your poor poor thing. I went through this with DM, trying to work and care for her and it was EXHAUSTING. In then end I told them if I didn't get compassionate leave I would have to quit and we worked something out because they needed me in the team but I guess this wouldn't work everywhere.

Do you belong to a union? If not, join one for support.
It maybe worth contacting your GP to be signed off for a period of time, as you have to look after yourself in order to be able to support your Dad. There then maybe ways to manage your work and support your Dad over the coming weeks.

Speak to MacMillan OP. They will be able to advise about benefits your dad will be eligible for and will help you apply. If you’re working and earning over £196 per week after certain deductions, you won’t be able to claim carers allowance. You would also be expected to be his carer for 35 hours a week, which doesn’t sound possible from what you’ve said. If he’s over pension age he’ll get attendance allowance, or if under it’s PIP, but there’s a qualifying period unless he has a terminal diagnosis. Attendance allowance would allow him a higher threshold for pension credit and if he meets that, there would be an added premium for disability. He may also qualify for housing benefit if appropriate and reduced council tax.

Macmillan will also be able to advise on appropriate care and liaise with the LA if necessary. When he’s discharged he may qualify for NHS continuing care if his care needs are medical and not just personal care. Age Concern are also a good source of information and can advise on the types of care available.

I am so sorry about your dad.

I cannot get my head around unsympathetic employers

Not sure where you are in the country OP, but in my area (South Yorkshire) we have a charity called FireFly who offer free transport to hospital appointments for cancer patients.

May be worth researching and looking into local charities near you that can help x

You’ll get paid carer leave , defined period (usually 5 day) not an open ended be there arrangement
You can ask for unpaid carer leave. But you’re not entitled to ongoing paid carer leave

Sorry to hear about your dad - what a shock. Social worker here. Your dad will have access to a social work assessment at point of discharge from hospital. He will be assessed for support with his eligible needs. Washing, dressing, accessing community etc etc. Care is means tested. So only benefits, means he will contribute a small amount towards the cost of care. The rest is subsidised by the local authority. PP talked about applying for Attendance allowance which is a good plan. You will have do domestic tasks yourself or he will have to pay privately.

Do you have children under 18? Perhaps you could apply for the 18 weeks parental leave (unpaid) for each child?

Speak to macmillan and ask them to help with a pip application for your dad. Once that is in place you can apply to be his carer and Universal Credit. Take the time with your dad

When my mother was dying I tried to keeplwork going whilst caring for her and ended up bursting into tears in a work meeting. I was signed off sick (stress)for four months and I spent some wonderful times with her during that time . I don't regret it for a second

I’m a brain tumour surviver (though all tumours are so different) and I found I needed live-in help for the first 2 weeks at home (had 10 days in hospital). I didn’t need constant monitoring and was walking etc., but the neurological fatigue meant I had to take constant naps (like every 3 hours initially). So being around to provide meals and just keep an eye on ensuring he’s taking his medication at the right times etc would be very useful. Check out the Brain Tumour Charity for some great resources for patients and carers: https://www.thebraintumourcharity.org

wishing him a really successful surgery. Praying they get it all out and the chemo weeks are less than expected.

feel free to PM me if you want to chat more

I’m so sorry to hear about your dad. My father was diagnosed unexpectedly with a brain tumour 3 years ago.
he wanted to be looked after at home - community nurses came and also a charity -longfield provided amazing in home care. We didn’t pay any money for the care he received. It wasn’t means tested either. MacMillan are a great source of information.

When my dad was dying at home with cancer all his carers were provided for including a carer who stayed all night every night. My step mum looked after him in the day but carers came in 3x a day to change him, etc and wash him, provide mouth care, nursing stuff. Plus the nurse came at least once a day of not twice to do the pumps. You may be surprised if things get bad how much support is provided. We didn’t pay for anything.

i might be wrong but i thought of someone needed medical help not social help it’s paid for??? I suppose it’s where the line is drawn? The powers that be may say it’s social unless he gets to a certain state of sickness/incapacity?

when he has the surgery he will obviously be in hospital and they shouldn’t be discharging him until he’s well enough to go home/there is sufficient support for him. The longer term chemo may be more of an issue…..do you know are they doing chemo before the surgery to shrink it or after or both? But again the hospital may provide transport. Meaning you could potentially move in and be there in the evenings. People having chemo will be on a cycle and may feel worse at certain points in the cycle but ok for most of the cycle….so you could maybe work from home at certain points or take leave?

im sorry, I hope his treatment goes well.

I'm sorry to hear this news OP.
You will find this very useful, I think, it covers leave entitlement and discrimination related issues too.
www.wbw.co.uk/news/employment/the-rights-at-work-of-carers-anyone-with-dependants/

Having gone through some of what your father will go through, there will probably be fewer days where you are needed as a carer than you think.
Your Dad will be in hospital under expert care and will not be allowed home until he is capable of living alone. Driving to appointments and understanding treatment, prcedures and medications are areas where your father may need assistance. Frozen meals, social in home services and other help can be accessed so make yourself aware of all those helpful things that will mean you can work as much as possible like you do now.

Is your father quite frail or unwell already? If not, I would try not to panic too much right now about care. I have cancer (head & neck, but not brain) and while I did need some help immediately after surgery, generally most people going through cancer treatment do not need full time care. Help with shopping and meals and a bit of cleaning if he is truly being affected by treatment, but frankly many people still work for at least some of the time once they are back in their feet.

It may also be some time before he has surgery (it was about 5 weeks after diagnosis for me) and starts treatment (I was told the target is 12 weeks after surgery). You will have time to figure this out in the meantime.

He will have a cancer nurse specialist probably attached to whatever consultant is doing the surgery and he will probably have another attached to oncology. Ask them to connect you with a support worker. Your hospital may also have a MacMillan centre. My support worker sits with that centre, so that may be somewhere to reach out to directly.

Initially you are entitled to Carer’s leave. Every employee is now entitled to 5 days leave to care for a dependant, into category which an ill parent without other support would typically be included. Some employers offer this leave paid. All employers have to offer it albeit unpaid.

I appreciate that that won’t help in the longer term, but perhaps a conversation with HR will help find a better solution.

Thinking of you and your Dad.