Its impossible to work from home and care for someone with terminal illness in the house.r someone who's term

[Timeforabiscuit]

My DH has late stage cancer, and I have absolutely no clue what to do for the best.

He's had a few big hits in his abilities over the past month, and I've taken time off work to tide us over. I've run out of annual leave covering for surgeries, treatments and last family holiday.

I just can't see how I can work and look after everything else home wise, teenagers and cancer stuff on top.

The carers allowance won't even touch my salary, and the past month has been really isolating. Cancer has become my new job.

DH now has substantial problems communicating - which is where he needs alot of time and reassurance, he's not confident going out on his own. Everything with him just takes three times as long.

I know I can't work and look after him, but society just seems so hostile and the news about breaching income limits makes me very wary claiming anything, my work have been amazingly flexible - but they need more than a warm body in a chair.

Have you contacted Marie curie ? You need support to
understand what you are entitled to and how to go forward
sending you hugs OP, I’m so sorry you are going through this

I agree with @Eggmoobean You need help and Marie Curie will be the best placed people to advise you. It might be possible to take some unpaid leave, or be signed off for a while if you’re struggling to cope. Or it might be that your job is your life line and that it’s better to pay for a carer to help with the day to day stuff. 💐

Thanks both, I think the issue is not knowing what carers could do right now - when actually DH just finds the time with me the most comforting.

I've been outsourcing what I can, but I've just hit a wall. Suddenly everything is in the too tricky pile.

Check your dh is receiving all the benefits he's entitled to plus say you need more practical support to his medical team - they follow your lead as some families don't want outsiders at this time.

Could you reduce your hours working, could friends, neighbours etc have a rota to sit with him so you can work?

I am signed off currently, sick note runs out next week, I truly thought I'd feel better by this point with one less thing on my plate, but all the cancer stuff mushroomed.

Finally could work give you an unpaid leave of absence if you can afford it?

I think you need to go off sick. What an incredibly difficult situation for you.

I’m so sorry OP, this country isn’t set up to allow people to care for the ones they love. Speak to your employer and see what they can support with - I know it feels too much and suffocating to deal with it all but day by day and bit by bit is the only way to get through.

I also echo speaking to Marie Curie as they may have some practical suggestions that you haven’t thought of and can advise on finances etc.

sending you all lots of love 💐

I know it seems counter intuitive but you may be better going back to work / working from outside the home a few hours a day and having your dh assessed for carers to come in. It will give you both a break from each other, and it’s better to get it set up now whilst things are vaguely manageable than trying to scramble to do it all if things spiral downwards. Your GP should be able to put in a referral to the community nurses who will know what to do. (We did this with my Mum who I nursed through terminal bowel cancer). I think it’s really important not to lose yourself in it all. It’s okay to say you can’t do everything and in my experience people won’t step in unless you explicitly say this.

No advice unfortunately but just wanted to say I'm so sorry for what you're going through right now, it sounds like an awful situation, be as kind to yourself as you can and whatever you can leave by the wayside then do it.

No harm in frozen pizzas for dinner, letting the washing build up. You're doing your very best.

This sounds incredibly can you get the sick note extended? Doesn't sound like are well enough to cope with work on top.

Financial:

If your DH has worked in the last two or three years he may be entitled to ESA employment and support allowance. The process is simple if slow.

www.gov.uk/employment-support-allowance

His medical team may be able to advise on this as there is a special case for cancer.

Regardless of whether he has worked he can apply for PIP.

www.gov.uk/pip

Obviously you can apply for carer's allowance.

You are entitled to unpaid leave and compassionate leave (but obviously that won't help the financial situation).

Marie Curie or MacMillan may be able to help as they will know the benefits system backwards and what he will be entitled to.

I know it seems counter intuitive but you may be better going back to work / working from outside the home a few hours a day and having your dh assessed for carers to come in.

yes sure because social care is waiting to support you. Not!

stay off sick, it’s impossible for you. If you were in my team and working I’d just tell you to do the minimum and get cover for the work. That’s what we are doing for someone whose wife is sadly dying from cancer. I really would stay off sick. Sending you strength at this very difficult time

What is your work sick leave policy like? I would get your sick note extended.

I was signed off for 2 months last year when in the same situation, and it was the only way I got through it all. Emotionally I just couldn't be everything to everyone and it was work that had to give. Thinking of you 💐

Thanks for the suggestions, I am taking them on board.

DH is, ironically, low maintenance. So he doesn't actually want to have people with him, he needs to spend most of the time resting. It's just when he has a question he needs to say it straight away, or he'll lose it.

It's the managing the admin of changing symptoms which is challenging, which need to be passed on to specific teams, appointments, medication pickups, Speech and language, chemo, scans.

Does he have any insurance policies? They will pay out in circumstances like these, similar happened to a family member and she was able to get a year unpaid sabbatical and paid off mortgage. It made a massive difference to last few months.

Id also try and claim whatever I think they fastrack benefits

My manager had a member of staff in a similar situation to you . . . she was so lovely as she insisted our colleague stayed at home (certificated sick leave) and explained this by saying "we can all cover your work but only you can look after your husband"

Sending you love & strength OP 💐

I agree that you definitely need to get your sick note extended. A person is only capable of coping with so much. You’re going through a bloody awful time and being pulled in all directions. Something has to give and it can’t be you.

Well they certainly won’t if you don’t make them aware you absolutely need it. Been through it all twice with my Mum and my Gran, both nursed at home through terminal bowel cancer, got Mum continuous care funding. It’s all very difficult to navigate but the more they see you do the less they offer.

Sorry op that was more of a general comment. I appreciate your situation is complex.

I just want to say you are a lovely wife and please take care of yourself too.