Taking time off to care for Terminally ill wife

Hi all,

My wife 31 year old has stage IV lung cancer and has been fighting it for the last 4 and a hlaf years, the last few treatments havnt worked and the pain etc is getting worse,

My wife has never aksed the doctors for a time scale and they have never said anything (thats the way she wants it)

Time is precious and im thinking about doing less hours at work or working from home, can anyone help legal advise on this,  we have a 6 yrs old son as well

I have worked for a small family run (not my family) for 18 yrs now and dont want to get funny with them as they have supported me so far

I need to have a chat with them but need some advise first pls

  • Hi there Alif, I'm so sorry to hear about your wife having lung cancer. I wanted to welcome you to the forum and although I can't give you any advice about your job, I just wanted you to know that I read your post and I feel bad for everything that is going on in your family. You are such a young family with a young child and it is so sad that this has happened to you. I'm in Canada so even what I know here likely wouldn't apply there anyway. I gather from you post that the family company where you work is aware of your situation. Would it be possible for you to speak with the person in charge and ask him/her what options you have for taking some time off to care for your wife. It seems like you are a loyal employee for 18 years, so there may be something they can suggest. Another option may be having some help from family or In Home Support people to help out while you're at work, if you can't get time off. I feel really bad about the challenges you now face. I hope that these possible options may be of some use to you.

    Come on to the forum anytime for support or to rant, cry, whatever you feel you need to do, but let us know how you're getting along.

    Take care.

    Lorraine 

  •  

    Oh Alif, I sympathise with you on this subject because it is just what my husband and I are struggling with at the moment. My hubbie works for himself but is seconded to a company who have been brilliant up to this point.  However, we fear the time has come to spend some precious times together and see no way around the situation as he does not get paid if he doesnt work. He has cut down his workload enough for us to manage on financially but he himself is struggling to do his job to the best of his ability whilst juggling being with me.  Of course, we want to be together at this time but can see no financial way of achieving this as benefits do not even cover our overheads.It is a real catch 22 situation and brings about a real dilemna  at such an important time.  We asked the prognosis question this week and were told that it was best for us to both have our own things to think about and not dwell on the illness which in part is right, but for 1) is it feasible my hubby can really do a good job with the sort of situation he is in working away from home and 2) there seems minimal help available for those needing short-term help.  I will follow your post with interest to see if others have any information we have missed.  My sympathies are with you x

  • Alif and Max, what an awful situation to find yourselves in.  You always think that there is going to be help out there for this kind of situation but, obviously, not.  I do hope that someone has some much needed help for you both.  With my very best wishes.

  • Hi Alif and Max,

    I am sending you a link to our information about financial support.

    It would be worth also contacting our nurses about this as they may have further advice they could give you.

    Either you could call them on : 0808 800 4040, freephone from landlines and most mobile phones, from Monday to Friday, 9am to 5pm. Alternatively you can post your question in the Ask The Nurses section.

    Best wishes to you both,

    Jane 

  • Hi Alif (and Max)

    Just wanted to add that I am thinking of you both at this difficult of times.It just seems so wrong that when you need very necessary support, financial help is hard to come by.

    When my hubby had to stop working a year after diagnosis and then sick pay commenced (alongside disability benefits), I was working very part time hours.  We looked into 'carer's allowance' to see if it would be worth me giving up work (I was offered six months unpaid leave) but it would have not improved our financial circumstances.  In the end my husband opted for community care nursing and I continued to work (taking annual leave when it seemed necessary)until five days before his death when I was home full time. I had suggested releasing equity in our home but hubby did not want to go this route or take his pension early (which would be available as he was over 60) but these are not options for those who are so much younger.  Some companies (mine included) can make one off benevolent payments in times of need so it could be work asking but I know when you are self employed this is not an option. We also took advice through Citizens Advice Bureau/MacMillan/GP/DWP to make sure he was getting all possible allowances.  Its an awful predicament to find yourselves in when there are so many more important things to consider (my husband got very fed up at being told by doctors/consultants to get his affairs in order 'sooner rather than later' for the three year journey he was on).  We  made it through his journey without getting into debt but at the emotional cost of spending less quality time together. I wish it could have been different. 

    My heart goes out to you and your families. (I would love to have a big rant on your behalf but will send huge virtual hugs your way. Jules

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    There seems to be more available if you are of pensionable age.  Attendance allowance is payable on top of PIP but you have to be over 65yrs old.  Pension credit is also available for those of pensionable age.  Carers allowance is not an amount a couple could live on and lowers the patients PIP payment as well as far as I can see.

    It is definitely a tricky situation for those in the lower age bracket and makes you realise how in hindsight (a wonderful thing as they say) it would have been so worthwhile to pay life insurance which also pays out with a diagnosis of a terminal illness.

  • Max , you actually have to be between 16 and 64 to get PIP and, being 71, I am not entitled to anything.  The whole system is a mess!

  • Hi Pauline, I didnt realise that PIP was connected to age but if that is so, then Attendance Allowance must be what you can claim instead if you are over that age - there are special rules for terminally ill persons with this benefit so it doesnt necessaryily have to be claimed for personal care but to enable/maintain independence in your own home It is not means tested so hopefully it i something you are entitled to.  You need to google it on the DIR.GOV website. Fingers crossed. You may also be entitled to pension credit.   You are right - the system is a mess. However, so are many things connected with this illness sadly and they only come to light when you are involved with it.  I hope you are keeping well \pauline - you are so supportive to others when needed x

  • Hi, Max, many thanks for that information, I will check it out.  I know I wont be able to get Pension Credit as my husband died many years ago and I get a pension from his company plus my government one. This takes me a few pounds above the maximum I am allowed to earn. One of my biggest expenses is going to the hospital.  I have to get a main line train, the London underground and parking which costs £34 each time.  Because I am not on any benefits I cant get transport.  Sometimes I am at the hospital 3 times a week and its a huge expense. Max, you are right, the benefits do only come to light when you are involved and at a time when you really don't have the energy to sort it all out. x

  • Pauline ..... the link that Jane has put on her Mods post shows some interesting info regarding reclaiming travelling expenses.  Take care x