Caring for my partner full time.

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Hi guys, I hope everyone is well.

Firstly I’ll give a bit of insight in to our current situation. My partner had Glioblastoma stage 4. She was diagnosed in October of last year and has since had a craniotomy which removed somewhere between 85-95% of the tumour. She then had a six week, five days a week course of Radiotherapy which ended around seven weeks ago. We decided not to enter in to finding out “how long” as we already had a rough idea what the general prognosis is sadly. Plus, it’s not always accurate and sometimes can have a negative effect in that you begin to fixate on dates and timescales. Although we appreciate everyone dealS with their situation in their own way.

My partner has three adult daughters, the youngest of which still lives with us. The other two have flown the nest. One lives locally and the other some twenty miles away. I am currently still working full time to help keep the wolves from the door, but we are already in receipt of Universal Credit (UC) and the new version of PIP in Scotland.

Although my partner is still able to do some things, she has good and bad days. Sometimes I find it a bit of a struggle to keep all of the plates spinning if that makes sense. When I get home in the evenings, there are quite a few tasks I still have to take care of (not that I’m complaining) and sometimes feel like there aren’t enough hours in the day.

I wanted to ask if anyone else on the forum has went down the route of leaving work to look after a relative or spouse full time? Our situation is slightly tricky in that unfortunately we don’t have any savings to fall back on to support us. I’m unsure where I would stand from a benefits point of view and if I would be able to claim anything or not. Would I be viewed as deliberately making myself unemployed, or would it be seen differently if I were leaving work to care for a terminally ill partner? I also pay child maintenance for three children from previous relationships, so not sure what would happen to these payments either.

if anyone has any experiences similar to it situation, or has any knowledge of such I would love to hear from you. If it helps, we live in Scotland if that makes any difference.

Thank you for reading.

All the best.
BB

GRANNY59 over 1 year ago

Hi BearderBoarder welcome to the forur and I am so sorry to hear what has happened for you and how things are happening for you all at this moment in time.

I think the best thing that I could suggest to you is to pick up the phone to the MacMillan Line and have a chat with one of the welfare advisors that they have and they may be able to help with telling you which if any benefits that you could claim and what would happen if you gave up work. You really need to speak to someone who knows all about this and I m sure they will can help . 08088080000.

Best wishes to you all and thinking of you. x

gail

Mav over 1 year ago

Hi BB,

You'll get a better response than this from somebody more experienced, but for starters I would suggest that you can ask Macmillan about this kind of thing. You can either use the 'ask an expert' section of these forums to ask in their financial advise section, or give them a call.

We had a Macmillan nurse phone us who arranged my mum's attendance allowance, and also offered to look at other benefits for us.

I don't know if this is an option, but you could also look at your GP signing you off work, rather than leaving work completely?

I can't help with child maintenance payments etc but I hope somebody who does reads your post.

Best of luck to you and your family during this journey.

Crystalwitch over 1 year ago

Contact macmillan and get their help, they were brilliant with my partner, they filled out all the paperwork and made sure we applied (and got) the maximum PIP payment. They will be able to help and advise you. x

JAH50 over 1 year ago

Hi BB,

I am in a very similar situation, my wife also has a glioblastoma, the first one was removed and hasn't returned, but last January she was diagnosed with another one that was inoperable. She is coming up to 2 years this month. In the main she has been doing amazingly, until 8 weeks ago when she had a major seizure. This wasn't the first but it has had the most affect. It has taken alot of her, her understanding and now her mobility. Due to the seizure we were entitled to CHC continuing health care. We have carers come in 4 times a day and help. But for me it is still a full time job looking after her, as she can't do anything for herself. i work also but from home at the moment and work are and have been very understanding. At the moment I only get to leave the house once a week for a very short time to get the shoping. I won't lie to you its hard. She takes all her frustration out on me, but this is fine as this is what we are here for.

All I can say is speak to work, they could help, try part time or flexi working, it my help with the balance you need.

Speak to your GP, they can help you get people in place to help you manage the day to day tasks. They can refer you to other agencies who can offer suport, like your local hospice, they can offer specialist nurses to help with your partners condition and hospice at home to help with giving you time to do what ever you need to.

This is my first time replying on this forum, just hope it helps.

All the best JAH

BeardedBoarder over 1 year ago in reply to JAH50

Hi JAH, thank you for replying and also to everyone else who has read or replied to my post.

Unfortunately, my work haven’t been very helpful with my situation at all. Other than allowing me to use annual leave to cover appointments and things. Also, if I were to be signed off work by the GP, I would not be paid and would go in to Statutory Sick Pay which obviously isn’t much at all. There has been no offer of reduced hours, or flexi time either. Although, the job I’m in current really lend itself to flexi time due to the nature of the job and its business hours. I haven’t even had any kind of meeting, or sit down with any upper management from the company I work for and only the bare minimum from my line manager. Basically once my annual leave is used up, any time I may need to take off would be unpaid leave.

I guess I’m just finding things hard at the moment, a bit like everything seems to be stacking up against me a little. The situation and atmosphere at my work, which I won’t go in to, is probably exacerbating things a bit too.

I will try looking in the Expert area of the forum to see what information I can garner from there. Hopefully I can find a solution.

kindest regards

JAH50 over 1 year ago in reply to BeardedBoarder

BB,,

Sorry to hear work isn't helping you. I hope you manage to get things sorted.

Best Regards JAH

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