How do you manage work when facing a family member's terminal illness?

[Backhills]

DH has terminal cancer.

He's been at home but bedbound since the end of March.

While he was in hospital (for 3 months before that) I more or less carried as normal. It was hard, really hard, coming to terms with losing him whilst not being able to see him, but keeping busy was good.

When he came home, he was bedbound but surprisingly well in himself. DS2 was wfh and carers were coming in, so I carried on going to work, although work were really good about allowing me time when I needed it.

As DH's condition has deteriorated I started working less. Again work were brilliant, to begin with I was in work unless I needed to be at home when I wfh, then I started wfh unless there was a reason to be in work. DS2 went back to work and DH condition made it harder to leave him.

Over the last couple of weeks, I've been "wfh" but really only keeping on top of email and being available by telephone if needed. Again boss has been amazing.

Today boss has suggested it's time I step away from work altogether. I think to do this, I'll need to get signed off sick. I understand it's probably easier for them just to know I'm not around for a while.

The issue I have is that whilst he's definitely deteriorating, I have no idea how long it will be. I think it will be measured in months, but I can't take 6/9 months off sick. Apart from anything else, I'm now solely responsible for the bills.

What's "normal" in this situation? If I knew it was going to be a month or 2 then definitely, I'd take the time off, but I don't and none of the medical people will put a figure on it. I've really tried to get them to!

I also expect I will genuinely need some time off sick and/or to support our DC who are far too young to lose their dad, after he dies.

I'm so sorry about this. You might try calling Macmillan - have you or your DH had any contact with them? In my experience (as a cancer patient) they are very knowledgeable on a vast range of subjects including work issues.

I’m really sorry it’s so hard, Backhills

Apologies if I’m confusing you with someone else, but do you work in education? So will work ease off over the summer or stay the same?

Is it possible to get more care to enable you to work e.g. 2 days per week rather than off sick completely?

I do think the best thing is to take a period off completely. And it is unlikely that it will be 6-9 months I would have thought as you are describing slow but steady deterioration over weeks/months.

Also, if applicable, your HR department or trade union.

Firstly, I'm really sorry that you're all in this situation. How utterly crap

Addressing your point, what's the setup with your workplace's leave policy? I'm a line manager and would be looking at granting compassionate leave on full pay in these circumstances, unless you're actually ill yourself. I'd also do all I could to ensure that my employee got full pay. To help me with that though, I'd need to have a rough idea how long we'd be doing that. Have you been very straightforward with the consultant caring for your DH and said you need to know for work purposes whether he's likely to be terminal for, say, over a year?

Does your DH have life insurance with critical illness cover? If not, is he eligible for a death in service payment?

Oh it's soooo hard, I really feel for you.

For me, late-DH and I worked together, and he was a partner in the business. He was basically in denial that his cancer was going to kill him and apart from an initial 2 week spell in hospital at the beginning he kept working through most of it although taking time off form treatment etc, so I kept working as well.
As he deteriorated towards the end he was at home more and I still went to work (I'm part time) but at the end of January it was clear he was in the terminal stages and I stopped work. I had holiday and TOIL which I used up and was then signed off sick by my GP. Work paid me while using holiday and TOIL (obviously) then paid me 1st 6 weeks full (policy is 5 days per annum) pay.
He died late March. I then returned to work about 6 or 7 weeks later, on a phased return.
I was fortunate that money wasn't an issue in the short term, and I was able to drop work and pick it up again on my return - having working for then for years helped with that.

Speak to your boss, see what the options are etc

Financially, does your DH have life insurance etc which will pay out? And are all benefits being claimed? Taking immediate financial pressure off is crucial. I understand you’d worry about job security in the future but your work sounds like a good employer.

I hope you don't think I'm being rude by asking this but do you mind if I were to ask if the doctors had given a time frame and if your DH is receiving any palliative care?

A friend of mine went through something similar with her spouse, and I don’t think there is a right answer here. She decided the moment her DH became stopped recognising them that there was no point taking time off for him and left pretty much everything related to his care to the excellent carers, while she focussed on the kids. After he died she took a sabatical for 9 months and just focussed on getting the kids back on track and she thinks that time really helped them cope.

Have you claimed PIP for your husband? Under the special rules for terminal illness that will kick in relatively quickly.

Is he being paid from his work? If not new style ESA also under the special rules as well.

Macmillan can be a great help, same with a Maggie’s centre if there’s one nearby.

Do you know what your works long term sick pay policy is?

I know this sounds awful Op, but does your DH have an insurance policy that will pay out when he passes? This may help cover any extra time off you have. You really need to speak to work and explain and see what they can offer. They may only officially pay 6 months full pay but this might be discretionary and they might pay you for longer. You need to be spending time with your DH at the moment.
So sorry this is happening

No I don't really think it's going to be as long as 6-9 months, but currently he has an infection so if the antibiotics do manage to clear it he could rally.

Yes, education but I work 52 weeks so whilst no one would notice me missing so much over the summer, I'd still need to be "off sick" to take leave.

So far as I have managed to establish, this is the maximum care unless he goes into a residential home. We could pay for more, but then I may as well stop work so I can do it myself and more visits aren't really going to solve the problem, I'm not leaving him now unless I can get someone to sit with him.

He's "safe" if I leave him, in that he can't get out of bed and come to harm, but he is very distressed.

If I were you, I’d take the time off sick now, telling your line manager it will be a minimum of 2 months. That takes you through July and August. Then fix a date to review at 6 weeks. At that point, coming towards September, if they need to cover you for the busier time they can get a temp in Sept-Oct half term. And review again.

It’s unpredictable but you just need to make your own plan with work that gives you and them a roadmap regardless of what actually is/isn’t happening.

Do get Macmillan to run through any/all finance related things.

At work, compassionate leave is discretionary, but historically we've granted up to 2 weeks and then asked staff to get signed off with stress if they need more.

Paid sick leave is 6m.

There will be some money from his pension, but we've always viewed that as "our" pension so I shall need that for my retirement. It's true though that we won't be destitute. I'm really more concerned about the job I suppose than money, short term. I do need to keep it and to go back to it at some point.

I've asked everyone from the GP to the McMillian nurses to the palliative care consultant to put a time frame on it and they won't. The Oncologist said "a short number of months" when he discharged him because there was nothing further to do, but he wouldn't give a number either. That was early March. The people I've asked since have all said they don't think it's imminent, but won't say more than that.

I found myself in a similar situation earlier this year. We knew DH was dying, but he had already exceeded expectations (they gave him hours to days at one point - he lasted another four months). He then seemed to reach a plateau and we were just utterly confused. It's awful when you just don't know what's going to happen and then on top of everything else you feel like you're letting work down.

My advice - especially if your boss has already suggested it - is to take the time. I was worried when it seemed to stretch and stretch but actually no one will be thinking 'oh bloody hell, isn't he dead yet?'. All you can do is be honest with them about what the professionals have said - you're looking at months but don't actually know.

After it's over, I promise you won't regret not spending more time working - and from their perspective it is probably easier to manage someone not there at all than someone who is only half-there.

Sorry for what you're going through.

When it's so hard to get a concrete idea of timescale, I'd go with the emotional information. You say that your husband is getting distressed, so maybe being around is important right now.

If you take six months now, and then you need more time after that, then you can revisit that.

I'm so sorry, it's so difficult to have to come to terms, without the logistics too.

I'm really more concerned about the job I suppose than money, short term. I do need to keep it and to go back to it at some point.

So, in the short term the best thing for your DH and for your work (and for you) is to take the time now.

It allows your work certainty for a period, and it alleviates a layer of stress for you.

Deal with 3 months’ time in 3 months’ time.

Op would it be possible for you to drop to part time? So you only have the workload expectation of a couple of days worth? That way they can get someone else to take over your work for the other days without you feeling pressure of having a long period off.

I really feel you about wishing you had a better time frame. I was once told my relative wouldn’t make it to Xmas (this was around may) and they lived nearly 4 years.