Spouse has terminal illness - work?

[Soothes]

DH has a terminal illness, although no one wants to put a figure on it so I don't know how long we'll be in this situation.

ATM, he has a lot of pain and is completely bedbound - can't even use a bed pan, so is completely dependant on me and carers. However, oddly, he seems quite well in himself, has a big appetite, is talkative and seems happy enough with Netflix! Mostly awake during the day. Really doesn't seem like a man at death's door. No one can/will tell me what we should be looking at in terms of speed of progression of the illness.

I'm wondering what a normal expectation is re my work. I need to keep my job, I have almost 20 years before normal retirement age, I need to keep a roof over his head, support myself after he's gone and help our DC finish their education. (If they want it).

In theory care is in place to enable me to work as usual, four visits a day. I work close to home, so can be home within minutes in an emergency.

DS2 is wfh for the time being. He's only 17 so I'd hate a big burden to fall to him but he is there to get help if needed.

Neighbours both sides have said "anything we can do" and I will take them at their word if I need it. We also have friends and family locally although most also out at work, especially as things start to return to normal re Covid.

My work so far have been very understanding and allowed a lot of flexibility. I'm back to work tomorrow after the 2 week Easter break (school). My boss has said we will meet to agree a suitable working pattern for me. I can't afford to agree a cut in hours but OTOH, it would be very welcome. I can feasibly do some work from home which would also be very helpful, but everyone else is now back in, like it or not.

As I said, head has been amazing and I don't want to take the piss, but I am wondering how on earth I'm going to cope.

What would be a reasonable ask?

I could see if doc will sign me off, but I'll only get c. 6m paid leave and that could just be enough to take me to a place where what I'm "coping" with is even worse.

My DH died 11 weeks ago. My school (ASD TA) sent me home last March and told me not to come back until I was ready. The idea (pre Covid) was to have some quality time and make memories.

Could you do your job from home ?

CHC application is in course.

Hi op. I went through this with my partner a long time ago. We were not given a time either, and his situation sounds a lot like yours in terms of how he's presenting. However he did suddenly take a turn for the worse and went downhill very quickly after that. From seeming mostly OK, (apart from bedbound and needing help toileting, personal care etc) he died within weeks. I stopped work once he'd taken the turn for the worse, because I think it shocked me and I didn't know how long he'd be with us.
How does your dh feel, does he want you there? Is there anything you want to do together before he gets too unwell? I managed to get a, wheelchair for mine and we went out as much as possible, just to spend time together, although his brother did have to come along to help me transfer him from car to chair.
So sorry you're in this situation. Sending love and strength

Have you thought about increasing his care to enable you to continue working and alleviate your concerns about leaving him? You could have a live-in carer if he needs support in the night or a carer for the hours you are at work if he needs more support than the four care calls a day.

@Soothes

Work are being great and would give me all the time I need, these are all my own concerns. Mostly the one about them realising they don't need me. I've been there 3 years and they really did need me then, there was a lot that needed sorting out. But now, with the systems I've put in place and the staff I've recruited it does run itself, as has been evident to me, if not to others, over the last few weeks. When I'm not there things get done just fine without me.

You should be able to go away for a few weeks and things shouldn’t fall apart. That’s normal. What would happen if you were away for longer? Sorry for the situation you are in. It sounds really difficult.

Kindly, OP, would members of your team really judge you harshly for wah under such circumstances? Perhaps, quite understandably, denial is driving your thinking here?
Sounds like you have the beginnings of a plan - to wah at home during the mornings and aim to check in at work in the afternoons. Talk to your boss and take the offer they're making you.

I also work in school and know that some admin/support roles have key deadlines. I would be discussing those with your boss to show that either you know you can cover those or that you have a back up plan in place. eg Autumn Census; Exam Results Day; year end financials

I am sure you will be supported in your situation.

I think that, whilst your dh is seemingly okay in himself, and you know that he has carers in to meet his physical needs, and your ds there is he suddenly needed something unexpected, then, on your circumstances - being so close to home being an added bonus - I think I would work, with an aim of - all being well and no deterioration - working the Summer term. Then re-evaluate. Obviously, if you feel it isn't working, or things change with your dh's condition, then you can change the plan.
So sorry you are going through this

I understand about making memories etc but he can't get out of bed or transfer to a chair at all, we can't go anywhere and there is a limit to how long we can sit together in a day. We watch films together which is nice, but for 18 hours a day?

He's very supportive of me continuing to work, both to protect my future and to give me some time out of the house. However, leaving him alone for long periods seems unreasonable - basically he has to sit in his own waste if there's no one there to clean him, although he says he's comfortable enough now, he was very distressed by it when it first started happening.

Actually it's helped a lot to chat this through, thank you. I don't think it's the practicalities at home that will make work hard, it's me finding the headspace for work matters on top of everything else. I've switched off completely for the first time ever this holiday and I'm not sure I have the mental capacity to get back in gear, but I suppose there's only one way to find out.

We've also had a bit of a catastrophe with the house this weekend, the sort of thing that I'd have left him to sort out previously, so I am feeling overwhelmed, but hopefully that particular issue will be resolved tomorrow.

What it be possible to do a temporary reduction in hours? Have you got a Macmillan nurse or similar in to manage his pain? If he’s suffering that much in the mornings something probably needs tweaking

Yes, the pain management nurse is currently contacting him every 3 days.

Any other family or friends who could come in and sit with him? I know won’t help with the intimate care but you may get some mental time out whilst they’re there and he’ll get some company

Boss would be OK with that I think, but it might cause mutterings within my team, especially as I have a few who would have liked to stay wfh permanently, but who have been told they now need to come back into school FT.

I can't imagine for a minute that colleagues who know that your DH is terminally ill, would resent you WFH because they can't.

When my husband was diagnosed with incurable cancer, I had a term and a half off to care for him during chemo, went back for a term and a half when he was doing well, then had another term and a half off when he became terminal and needed nursing to the end.

I had nothing but support from school (even from the head, and she and I hadn't really got on very well up to then).

What an awful situation for you all.

I would do what I could to be with him when his pain is at its worst - I'd be very uneasy about being at school then. Can the pain management nurse help with that? It sounds horrendous for your poor husband. I think going in to work every afternoon might help you in some ways - it will surely be easier to work there than at home. So sorry for you, it's so shit.

It sounds like you need to get through the summer term with an adapted plan, and then reassess in the summer holidays.

I think something like compressed hours with X hours a day over 4x days in the office, middle of the day e.g. 12-3 or whatever, and the rest of your hours on call WFH. If the hours in work correspond with a carer visit, your DS being there and calling on a neighbour to also visit if needed, then if you have days that are worse than others you can make up your hours flexibly.

You might find that the physical act of going into work regularly is actually really beneficial to you - to relieve your anxiety and to give you something else to concentrate on. You have to give yourself as much normality as possible but I really don’t think you should stress yourself out wondering whether they’ll think you’re suddenly dispensable. Don’t borrow trouble, as my grandmother would say.

It sounds really tough and I’m sorry.

Assuming you are a CFO or COO, could you negotiate around the workload as opposed to hours? E.g. the BFR will be due in July so you may need to show your face at more meetings before then but could wfh a lot more at other times?

@SirPhillipsgroupie

Also, a palliative care nurse once told me that you can make an estimate of prognosis based on rate of deterioration; month by month = you have months, week by week= weeks, days=days.

Exactly what I was going to say regarding prognosis

Definitely communicate your concerns to your workplace as best you can. They ought to be able to accommodate, and I think working from home in the mornings then going in for the afternoon sounds like your best fit.

No one of sound mind would begrudge you WFH due to a terminally ill loved one.

For what it's worth, OP, you sound lovely. When my dad was seriously ill (in a coma for nearly a year), my DM was a bloody powerhouse and it held us all together. It's only looking back I can properly appreciate the strength she must have had to continue, and I know your kids will feel the same.