What would you do about in this situation?

[NewMatress]

DH is dying. Completely bedbound, he has carers 4 times a day but dependent on me and (just adult) DC the rest of the time.

DS1 works shifts so is in the house most of the day but mostly sleeping.

DS2 has just gone back to working on site after a year wfh. This is a big change for my peace of mind, although DH was rarely calling on him for anything.

I work FT and have an amazingly supportive boss who has basically told me to come and go as I please. However, I also have a fairly senior role with some important responsibilities, there are some balls that just can't be dropped no matter how flexible boss is.

WFH with DH in the house doesn't work very well. I can answer urgent phonecalls and keep on top of email, but I don't get much actual work done.

Going out to work is something of an escape for me. DH is "OK" at home on his own, he is mentally fairly alert and I'm only 10 min away in an emergency. Of course the nature of the emergency would affect if he was able to call.

The issue I'm having is not that I "can't" leave him, it's more that I don't have the mental capacity to work and deal with everything at home. I want to work, I appreciate the support I've been given and I need the structure, but I'm starting to worry that I'm not being very effective and it might be better for them just to step away for a while.

We have excellent sick leave entitlement and I'm sure I could get signed off due to stress or some such, but it doesn't really feel right.

The other issue I have is we have no idea how long. He's already out lived what they originally told us and whilst he's clearly very ill, he doesn't seem like a dying man iyswim and doesn't seem to be getting worse. If I knew it was a matter of weeks, I'd take the time off without a second thought, but it could be much longer. I can't stay off indefinitely, not least because I'm supporting us financially, but also because it would do me no good.

WWYD?

Oh dear, wwyd about work..... Told you, I'm losing it!

Bless you OP.

What do you feel would be best for you and your mental health overall in this situation?

I think you would be entirely reasonable to have yourself signed off for the foreseeable. If I was your colleague I would not blame you one bit.

Goodness that sounds difficult and like you are all doing amazingly at finding a way through one step at a time.
Do you think someone needs to be ‘on call’ as it were at all times for dh?
Would it be possible to put together a sort of ‘rota’ for you and your sons (if they are able/willing) so you all know you have certain blocks of time when you can relax/work uninterrupted out of the house. If you had that could you continue FT? Flexible work with an understanding boss sounds pretty precious.
Would reducing hours be possible?

If you think going to work will help you, can you sign up to response service for DH where all he has to do is push a button on a lanyard or on his bed and they come and see to him? Might give you some headspace out if the house.

I honestly don't know what would be best for me. I don't think staying in with a dying man FT will be particularly good for my MH, but I don't seem to have the headspace to do both.

I am effectively doing reduced hours, albeit informally, but the important jobs won't go away that way. My job, ordinarily, has quite a large element of being there to advise and support others more than actually "doing" myself.

Are you getting any kind of emotional support? Any counselling to help you process things? Any support with anger and grief? Any practical support regarding continuing to run a household, buy food, cook food, do laundry, admin?

If work is good for you as an escape I don't think I'd sign off. You sound more like you need a break from the rest of it. It's a terrible situation to be in, the prolonged living with sadness and ill health with no hope for a good outcome.

Are you supporting your DH emotionally or does he have help?

What an awful situation. I'm so sorry about your husband.

I think you need a good honest conversation with your boss. Is it possible for some of your responsibilities to be passed on to someone else for a while and for you to work part-time out of the house?

Did you post about this before? It does sound familiar.

What a very difficult situation for you. My OH died last year after a very long time of needing care. During that time I did place importance on making sure that I was doing the things that helped me to stay afloat; and made sure that I did these things - if my whole life had been centred on the sad situation at home I would not have come through.

I have to admit that my OH spent his last months in a nursing home as the responsibility of organising care became too much for me - luckily I was able to spend several hours a day with him, but the burden of making sure he was well-cared-for was taken from my shoulders.

I found that the constant arrival of different carers at home was very hard - some were good, some less so; some needed supervision, some not; people went off sick and new people would arrive in need of instructions etc. All were good kind people, but having to explain his needs over and over again was tedious and very disruptive for him.

I hear what you are saying about not having the head space to keep all these different balls in the air but my strongest advice to you would be to stick with work - they sound like sympathetic and good employers. You really will need them and your role with them when your husband dies - you will feel seriously adrift then without your work role. It is important to think about the future, when you will be needing to pick up the pieces of your life once more. And it important to think about this without guilt.....the litany in my brain often was "How will I feel when he is dead if I do x, y, or z now?" - this really got me nowhere - I had to make decisions that recognised the importance of my sanity and well-being as well as his.

As well as being physically tiring, it is an emotional roller-coaster.

Could you isolate in your mind those aspects of your work that are of greatest importance? - not just to your employers, but also to you. What brings you the greatest job satisfaction? If you concentrate on those things you will have something that bolsters you up emotionally and helps to get you through.

Above all else throw away any guilt - current or predicted. It is a hiding to nothing. Do what gets you through.........

My heart is with you - I send every good wish. I know this scenario so very well.

You're already grieving, that's one of the things making the situation tough for you. If you're not sure what is best for you, some time off work may help.

Does it matter if I've posted before? Unfortunately, as seen from the few posts here, this isn't a particularly unusual situation. As it happens, in my workplace of 130 staff there are three of us currently facing the same situation. One has been off sick since Sept, one is taking early retirement and me. I don't feel either of the other options is right for me, but I'm not sure I can carry on like this.

I have lots of supportive friends and imagine couple if "best" friends who seem to have disappeared and people have been great. Lots of people visiting DH, but TBH the more people who come through the house to help, the harder it gets. I get no peace at all and the house is getting grubby and tatty from all the traffic. I'm not getting any official help, other than the carers.

I feel like work is the one thing that could "give" but for me personally, that would be the worst thing to give up.

Very sorry for your situation and your husband's illness.
Could you talk to your boss about delegating some of the tasks that you're worried about not having focus for? Maybe use it as an opportunity to develop talent in this field with a fixed term promotion?
Don't give up work yet, but don't expect yourself to continue functioning as if this isn't going on in the background.

Limit visitors to a couple of times a week outside your working hours and when other family members are around. You don't have to make a big thing of it or even tell people that's what you're doing, just manage their visits. What about DH's friends? Could you get out when one of them is visiting and meet up with one of your own friends? Get help with the practical things, like a cleaner if you don't have one?

I know I've read about your DH's diagnosis and bringing him home, but I'm sorry I can't remember what his illness is. If it's cancer, have you contacted Macmillan? They were excellent for a family member in a similar situation. Also hospices provide support for the families, not just the patient. They have counsellors and other services. Please give one a call. The other thing to think about is speaking to your GP about you and how all this is impacting on you. You're in a really tough situation and anyone with half a brain will realise this - there is no shame in saying you're not coping with everything at this time. You're not superwoman and don't have to be. Give yourself permission to ask for help. You're at risk of spiralling into depression or a breakdown, if you're not already depressed.

The other thing to consider is your DH going into a nursing home or hospice. Hard though as he'll need to agree to it by the sound of things. If you weren't wfh before the pandemic then you've got home not being just home, but the office too. Now it's your DH's care facility (sorry, I can't think how else to phrase it) too. Home is no longer a sanctuary and I imagine the rest of the family is modifying its behaviour whilst your DH is permanently there and is so ill.

Can you arrange for someone, one of your sons or a carer to be available for one day a week to allow you to go to the office for a fixed day and work flexibly from home on others?

I'm sorry, no of course it doesn't matter if you've posted before.

Could you ask for a sabbatical from work?

Or get signed off sick for a month to give yourself a bit of headspace?

The hospice was excellent for my OH.....if he went to their day care you could use that day in any way you wanted.....work? ....go for a walk/....read/......

The local hospice were excellent here......they also looked after me......sometimes when he was there they would give me a massage. My OH did not have cancer and that was no bar to him accessing their facilities. OH would have a bath and a shave and haircut there. I was also offered counselling....all this was free. It might be worth looking at what is on offer in your area.

Take care.