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.

Sorry to hear about this.

In your situation, i would suggest the following:

Working from home 1-3 days per week, still with carers, but at least you will be there.

Compressed hours eg working 4 long days so that you have a day off during the week, although, it's really tiring.

Changing start and finish times eg starting work earlier or later so you avoid rush hour.

Having a shorter lunch break eg 1/2 hour so you can get home.

None of this had to be permanent, so your needs may change in the future, so explain to your manger that things may change.

I'd avoid going sick now if you can help it. Try and do what you can for as long as you can.

So sorry for your news. Does your partner have critical illness cover as part of life insurance? If so, that will pay out prior to end of life. May be worth having a check.

Could you take extended unpaid leave? Or even a sabbatical?

Sorry to hear of the diagnosis. Are you a teacher? As we can be more specific if we know your role.

Are you a teacher, support staff or admin? This obviously makes a difference in terms of what's practical re adjustments.

If for example, atm the days are generally fine, then I'd try to work as much as is your normal schedule.
If atm mornings are particularly manic with carers and supporting oh, then maybe requesting a later start would be useful.
Likewise if a slightly longer lunchbreak would afford you the ability to get home, back and not kill yourself maybe request an extra 15 minutes perhaps covered by a LSA if classroom based.
If you find it a struggle you could request a temporary reduction of days, for example working alternate days.
I'd be wary of utilising anything too soon, given you have no timescales. Have you googled,i know its awful, but seem what say stage 4 of that condition prognosis of time is? Just to give a ballpark figure, given there's a huge difference between 3 months and say 18 months.
If on silver or burgundy book ts and Cs then you'd be entitled to full pay for 6 months and 6 half pay.

It sounds like a difficult place to be.

Sorry you’re going through this. If your partner is happy with carers I would personally carry on working as normally as possible for as long as you can. My DH had 18 months between diagnosis and death, about 9 months of that bed bound. You will need the time off in the final stages. Could you work four long days and have one day at home maybe? Or 1-2 days or mornings a week working from home?
He would not want you to drop hours.. you do need to keep your job.
Sorry you’re going through this

I know our life insurance will pay out on terminal diagnosis rather than end-of-life. Might be worth checking if that would give you some breathing space.

Tell work that, at the moment, their flexibility in an emergency is all you need, but you would appreciate the door being open if you need to discuss changes in the future.

There is some insurance money we could have now, but that's not pressing, we have some savings to cover immeadiate living costs. It's really the need to keep hold of my job to support myself going forward that's concerning me. I have a senior administrative role in a trust - a much better job than it sounds! I don't want to be a 50+ yo job seeker, who's been away from the workplace for a while, in a couple of years time, if I can help it.

Through my work I see a lot of people in this situation. Could you take some unpaid carers leave if needed ? Does your husband claim PIP ( assuming he is under state pension age ). If not then he should apply for that, if his prognosis is less than 6 months then it may be able to be speeded up. If on unpaid leave and PIP was in place then you could claim carers allowance temporarily whilst off work. Depending on savings/ capital/ pensions etc you may also be entitled to claim Universal credit.

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.

I could probably negotiate some unpaid leave, but TBH I'm very worried, in a world where there are always budget pressures, about them realising that they don't actually need me and my fairly substantial salary as much as they currently think they do. I need to hold onto the job for the future.

I’m in a similar situation, knowing there is worse to come. Work have been brilliant.

Does your DH have a Pension? If so, there may be an ill health retirement option which might be useful.

What about asking to work from home? Then you still get to be apparently indispensable!

@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.

It sounds awful to say, but is what's worrying me, but on a practical level it is. If I knew we had, say 3 months, I'd take some time off but he really seems quite well and while his mobility has decreased and his pain increased a lot in the last 3 months, he really doesn't seel that "ill". He seems like a man with a bad back rather than a sick man iyswim. So I'm worried that if I put things in place to reduce hours now, we could be in this situation for a long time.

If you Google it, he probably has 3-6 months, but he was unusually young and fit, for this condition, at the outset so it's possible he has longer.

Sorry for what you and your family are going through.
Your boss is obviously willing to make adaptions to keep you. Take it one week at a time. If you can get by with working out of the home for most of the time now, then do. It may also help you maintain a bit of reality at what must be a surreal time. When things change, as they surely will, you can change the plan.

I think perhaps work until the summer and then reevaluate after the end of the school holidays?

I guess it's unlikely you will be going back after them for some time.

If he deteriorates you will just go off then. Your employer will understand. They surely have a policy?

Are you a union member?

Sorry to hear about your situation. Would you be better having at least some time away from the home at work? I know everyone deals differently with these things but sometimes it helps to have something outside the home to divert your attention. If yours is an admin role the obvious suggestion would be part time home working? It’s a horrible thing to think about but maybe have a conversation with the drs about the likely course of the disease and time scales.

As he seems well in himself for now I would stick to full time wrking with maybe some adjustment for homeworking if you can and if the office can do it maybe allow you some flexibility around start an finish timings so for e.g. you are there for the am carer or late afternoon

The carers generally don't do alot in their short visits and certainly aren't much in the way of company as they are too busy. It also may allow you to drop one of the care visits if finances start to get a bit tight.

So short term stay full time, but discuss the progression possibilities - so maybe full time as normal (but not staying longer etc for now) the n maybe flexing the start and finish time or some home working, then possibly a reduced schedule when things start to worsen with potentially some unpaid leave and you going onto carers allowance or whatever you and DH entitled to for a period.

Caring is all consuming even with help. As things worsen discuss different pathways with GP, District Nurses and so on. Also Marie Curie Nursing is not just for cancer patients but also end of lige care such as sitting up all night with patients that need 24/7 supervision.

Put in place all the aids neded in your home, set up shopping deliveries and other online accounts to make life easier, look into respite care if there is any, but also if you don't have hoists at home etc then sometimes it possible to book baths at care homes who do have failities - my neighbours brother has to do this and loves his weekly bath, he is severely disabled followin a major stroke and several smaller ones since so wheelchair bound.

With being bedbound I would also get yourself trained for lifting and moving patients and also care of things like bedsores. You need to make sure you are cared for as well - so I would ask neighbours to sit with DH for an hour or so whilst you go out and do something like yoga or meet a friend as caring is also very isolating.

If Son is WFH he can't really also provide any sort of level of care but he could for e.g. eat lunch with Dad and have a cuppa at 3.30 ish etc and of course be there if an emergency happens. But als be aware of the mental pressure on someone so long.

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.

Has he been awarded CHC fast track on the basis of his prognosis ?
This may allow you to manage in the best way for you and your family and lessen the financial implications.
I would ask the district nurse / palliative care team if this is in place .

Would half days in work and half at home be an option? Then you'd be physically present every day, say until 1pm, but dh isn't alone for full days. It's also much easier for people to remember that kind of working pattern so they don't feel aggrieved that you're not around when they want you.

It may be that it gets to the point where you're not doing the working at home but by that time the precedent is set and you're not constantly renegotiating working patterns.

Why don’t you see if work will support you to WFH for half days, so you could be there if needed up to, say lunch time, then go into work for a few hours? Take some time for yourself and your own well-being - you can’t take care of your husband if you’re not taking care of yourself.

Please make sure you’re getting all the financial support he’s entitled to. Just in case you’re not, I’ve posted a couple of links.

www.gov.uk/terminal-illness-benefits
www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

Take care x

Yes, I was wondering if working mornings at home would be reasonable. DH pain is much worse in the mornings and whilst I can't really do much for him, I wouldn't want to leave him with DS until I know he's settled. It's quite distressing to see.

However, I'm not sure how much actual work I'd get done. 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 int school FT.