Working and caring for someone

Hi how do people manage to work and care for their husband /wife at the same time my husband was diagnosed in August and I have been of work since am starting to feel guilty bout taking so mych time of  as its not me that has the cancer but feel I can't work shifts and care for my husband at the same time how much time do people take of work his cancer is terminal so that doesn't help as I want to be there for him 

  • I can't answer as a spouse but I can answer as a son who lost his mother to cancer eleven months ago. During the initial stages of the cancer over the course of two years, my father and mother went through life mostly as they had before cancer. There were a few stints in the hospital for debulking surgeries where my father took time off but mostly both of my parents continued to work up until the final month or so.

    During that final month, my brother and I took turns being with my mother when my father needed to be working. There were days when family friends and church members also helped out. For the life of me, I don't know how we made it through that last month at all but we did. 

    During the initial stages of the disease, when friends and other family were coming to grips with it and making offers to "let them know if we needed anything," they might not have been 100% sincere in their offers but I wrote it down and swallowed my pride when I called them up and asked for help. I never had one of them say no whether it was spending a couple hours with my mother so we could get some sleep or going to the grocery store for a few things so we didn't have to spend time away from her. 

    Also, hospice was very good when the time came to helping us get in touch with resources that helped us out in those final weeks.

  • Hi, I am wondering this myself, my Dad has terminal throat cancer and he was in hospital five weeks ago for a tracheotomy and he took a turn during the night and we got called in. They advised that there was nothing more they could do for him. He said he wanted to come home and here I am five weeks later helping my step mum care for him. I have been off work now for five weeks and have not seen much of my children or my husband. I want to go back to work, some days I think I can do it and other days I think it will be impossible, because I am totally exhausted.  Caring for someone with cancer is draining emotionally and physically. Are you getting any support? If you are caring for your husband you are entitled to a career assessment through social services, you can request an assessment through your local council.

  • This is something I wrestle with a lot.  My husband has terminal stomach cancer, we have been living with it for a year now.  In the summer he got quite poorly and I couldn't cope with work and looking after him, although he is not yet at a point when he needs massive amounts of physical care - more my presence, shopping, cooking, usual stuff (not that he wants to eat at all) - I have a fairly stressful job, managing staff etc and it was too much.  I was off until mid September, then realised I was going to run out of sick pay so had to go back as I am the wage earner.  A couple of weeks ago, the oncologist said he reckoned maybe a couple of months left, although obviously there were the usual caveats (maybe less, maybe more, maybe completely wrong!!!!).  So I signed off again and I am so glad to be at home with him.  He is really, really tired but very frustrated because he can't do anything.   

    I worry all the time about whether I should be back at work but the idea of leaving him and going back to manage my job just makes me feel ill.  But I don't know how long this is going to take.  And if I run out of sick pay, I will have no choice.  If it wasn't for money, there would be no argument- however long he has left, I want to be there if I possibly can. 

    Anyway, I'm waffling on.  I think the answer to your question is there is no right answer!  Whatever feels right, feels right.  LIke you, it is not me to take time off from work but, at the end of the day, work will still be there when this is all over.  

    Best of luck

    Penny

  • Thanks guys for replying yeah I did try and go back to work but only managed 2 days as I want to be there for him and didn't feel right me at work and him at home on his own at the moment am still on 80% off my wages which is fine at the moment and will look at it again when my wages chance as everyone says my husband isn't always goi g be here but work will be be here after he's gone x

  • Thanks guys for replying yeah I did try and go back to work but only managed 2 days as I want to be there for him and didn't feel right me at work and him at home on his own at the moment am still on 80% off my wages which is fine at the moment and will look at it again when my wages chance as everyone says my husband isn't always goi g be here but work will be be here after he's gone x

  • I am in exact same position . I have been off work similar time and I have regular guilt that it’s not me who is ill. However I know emotionally I just can’t face it similar to u I am a manager and haven’t got the energy to look after stuff be normal etc. I am doing a. Phased return at the moment and will look to go back in jan depending on next scan results.

    try not to feel guilty if u can afford it and work are ok just do what u need to do! No one knows how this is unless they have been in this situation so just be there and do what u want to do x

  • Hi...lots of posts here reflect my concerns.  H has small cell lung cancer and we’ll be lucky if he gets beyond 12 months survival ( not that he acknowledges this...I don’t blame him). Oncologist estimated 9 months.  

    i work from home as part of a team writing exams for professional qualifications. It’s intricate, technical and solitary, the hours are long, and there are always many many rigid deadlines.  So my problem is different from those of you who are senior managers...but equally I’m not sure how well I will manage . We often have miserably disturbed nights due to his awful back pain ( bone mets...lots) and I feel guilty about leaving H alone bored, lonely, ill, scared...dying, basically, whilst I’m trying to work. Clearly many of you share this concern.  I’m going to ask for part time hours but there’s no guarantee...the employer isn’t keen on part timers.  Mainly I feel I should be there for him.  

    what solutions / experience have other people found ? I would be very interested to hear how others have managed on a return to work  

    i feel I could probably manage a less demanding job 2 days a week outside the house, And I know I won’t want to do my lonely job as a widow. I am only on a temp contract anyway...covering someone’s mat leave.  Equally I can see the benefit of “escaping “ out of the house. Would love to hear what others have done. Thank you. 

  • Hi, I've been reading this thread as I to am the breadwinner with a senior position, my husband was diagnosed April 2018 things improved after chemo for a few months and I was able to work normally.

    Late 2018 he was so very bad I thought we were losing him, by March 2019 I couldn't take the guilt/stress any longer and took 4 months off. Finally decided I should take partial retirement (I'm 56) which started 2 weeks ago. However, he has deteriorated even more and his morphine tablets have been increased today to 80mg every 12 hours plus liquid and he can do very little for himself now.

    I started back after Xmas break this week on new hours of 24 each week over 3 days but I'm back with the guilt if I'm at work I feel guilty and suffer from a lack of concentration if I'm home I feel guilty I'm not at work. Because I knew there was no way I could leave him for 8 hours I'm doing more days fewer hours. Work has been fantastic and often tell me to go home, but the guilt I feel inside either way is hard and I do like to get there to give me some sense of normality. Im now at the point I could cry just thinking about things and to make matters worse my daughter went back to Uni on Sunday and thats the spark in the house gone too :( 

    Sorry seem to have gone on a bit but like others, I want to maintain some independence for when Im widowed xx

  • Toni thank you for writing. I can see a common theme here. And like you it feels harder now youngsters have gone home. I wish you very well ( sending an e-hug) with your new work hours. 3 x six hour days is the most I feel I could manage, but unlike you,  working from home I won’t get stimulated by seeing normal life...I also think my concentration would suffer and then I’d end up working extra hours to make up time and meet my numerous deadlines.    It is really helpful to see that my concerns seem typical.
    Mark is not yet in such a bad state as your poor H, but he is needy, lonely, prone to panic, in pain.  I wouldn’t want to be left alone endlessly in his state. I am sorry to hear about your tough times, oesophageal cancer seems to be a really bad throw of the dice, although for us the aggressive speed of small cell lung cancer is also grim.  
    When my elder son started senior school the headmaster’s introduction talk said...when you are past your school days, I reckon you won’t look back and think, gosh, if only I had spent more time gaming.  For me...I think...replace in our context and insert “working” instead of gaming.  I’m increasingly thinking my best option is to find easier work if I possibly can. Ambition ? What for ? My position is a little different as I’m only on a temp contract anyway. And soon I’ll end up with all our joint pension pot and no one to spend it with. I hope that I could find work “later” if I wanted to.

    Did you know that inheriting a pension pot from someone under 75 means that all income you draw from that pot is tax free ? So that may be helpful to know.  Thanks again, stay in touch ? X

  • Go on as much as you like! That's why it's here. 

    I'm still at home with my husband and will stay that way for the duration, however long that is.  We will manage somehow.  I can't leave him. He is housebound effectively and sits in his chair most of the day, mostly sleeping. 

    Do what feels right. 

    Love and support to all of you out there.

    Penny.

  • Thank you Penny. I think that’s the way I’m going although others are telling me to keep working ( GP, sons...). Best of luck. Xxx

  • Hi there

    My partner, who would then become my husband, was diagnosed 29th Jan 2019’with stage 4 oesophagus cancer which had spread to his stomach.  Soon we were told it was incurable but chemo could help kMoneybagp it at bay or at least stable.  He had 6 chemo sessions but it didn’t work and in August he became terminally ill.  I had taken annual leave from work each time he had chemo to look after him but then went on sick leave.  His cancer spread to his lungs and after 5 gruelling weeks in hospital I lost him on December 4th.  I am still on sick leave.  I have 6 months full pay and 6 months half pay.  There was no way I could work knowing he was terminally ill.  I will go back to work soon.

    I have moments of sheer disbelief that this has happened and what this vile disease did to him  and to our family.

  • That’s vile. But you did at least have the sick pay cover.

  • Hi MissQuirky

    That oesophagus cancer is a b****d my hubby was perfectly well and working just had a sore throat then all of a sudden he's terminally ill and palliative care right from the start. He has 2 tumours and has fought very hard and outlived his oncologist life span I suspect (he would never really say how long as rightly so he said its all just statistics) Hubby had a scan in December but will get results at next appointment in the next couple of weeks but suspect it has spread he has terrible problems with his stomach and his voice has more or less reduced to a croak, but hes still clinging on. He gets great joy when our daughter comes home from Uni but most of the time sits sadly in his chair watching his favourite films.

    Even though I'm supposed to be working 24 hours a week from this week, in reality, I've been in 14 and working from home tomorrow, but in a way its made him get out of the chair and get a drink and a sandwich which he doesn't when I'm home because I do everything and the less he does the less he can do :( Im trying to get a wheelchair so I can take him out for some fresh air. I know the time will come soon when I won't be able to leave him again but the thought of watching him deteriorate is scary.

    I am so very sorry for your loss and send you big hugs xx

    Carol

  • Hi JSBach

    Thank you for your kind wishes xx I understand what you mean about working from home I do that when needed but its as I choose rather than all the time and I do enjoy feeling like things are 'normal' and can talk about work instead of pain/end of lifecare/hospital appointments etc when I'm in the office.

    Having decided in effect to prematurely end my career by partially retiring it does take the pressure off and leaves me thinking about potential future opportunities maybe volunteering in my future spare time, and I now find my self with a very healthy pension pot sitting in the bank and like you say will have no one to spend it with, we had earmarked to fund fun in the sun with it xx

    Wishing you and Mark all the very very best xxxx

    Carol