What should I do?

[peanutz]

Last night my partner asked if I could take today off from work. I asked whether he was sick. If so, I will take a day off. He said no, he just wants me home with him. I would very much like to spend all my time with him but I am the only one doing the work and earning money to feed us both. I do not think I can afford to stop working. I have some saving money but not a lot and I do not know if there will be other things/services that I have to pay to provide the best care for him. Avastin took a big chunk out of my saving already. I also do not want to stop working as it means no income coming in and I will lose my skills. I expect to continue working for 20-30 years unless I happen to win tatslotto, not that easy as I never buy a ticket. I have 6 weeks of annual leave and 4 weeks of personal leave that I have been trying to save up for the past year and a half with my current employer so that I can spend it when my partner needs my care. In a way I feel I should spend most of my time with him now while he is still aware of my presence, enjoy my company, feel the love and have a chat with me rather than leaving him all by himself at home and feel lonely now and spend time with him when he does not recognise me any longer. I will have to see if I can afford to live with salary that I will earn in a part-time capacity or check out my partner's superannuation to see whether we can live off his super for a few months if I choose to spend more time with him, run out of leave and get leave without pay further down the track.

[Rikki]

Peanutz It is a tough call but as I read your message I started to think maybe you could negotiate with your employer to work part time. The time you have together is so precious but I also understand you need to maintain your employment. A difficult balance. Since I have been having treatment I was able to negotiate working less hours and using sick leave to top up my income. That has been a good balance for me. Good luck with your decision Rikki

[exhausted]

Hi Nat Have you been to centrlink, you should be entitled to a carers pension and he to a disabled pension. My partner and I were able to claim this from the very start as he is not able to be on his own and it sounds like you guys are in a similar position it is not a fortune but managable. Terese.

[SILLY]

Perhaps a day off as one one off only would do you both good .Consider it as a mental health day if you like . It sounds like your husband needs you even if he isn't feeling sick .

[rarsie]

Hi peanutz, I have been trying to tell my other children, spend time with your brother NOW not when he is unable to share with you, bugger work, you will manage as there are a lot of options there, less worlk hours, centrelink, do you have a coordinator if so she can help you with many things, you poor girl just try to make the time the best you can My regards Sandra

[peanutz]

Hi all, Thanks for your feedback. It's a tough call. I enjoy working and it helps keeping me sane. My partner can be very demanding and hard to live with. I know it's the medication and GBM that change him. I love it when we have good days and hate it when he's a different person. Everything he wants he wants it NOW or an hour ago. He whinges a lot and can't remember that he whinges. I can get into trouble for helping him and by not helping him. I got into trouble for cleaning the house and not holding him or stay next to him in bed while he has a nap which is most of the day. His family came over last weekend so I tried to tidy up the house a bit even though the main purpose of their visit is to help me with domestic work which is not my strength. It ended up Dennis changed the plan to get his family to come earlier and got out of bed in the last minutes, complained how untidy the house was (caused by him mostly) and bossed me around to put things away and off to have a shower. When he finished shower, he continued to boss me around to tidy up the house and asked "don't you think you need a shower before everyone's here?". So, I calmly said to him that he's lucky his family would be here in any minute; otherwise, he wouldn't live long enough for the tumours to kill him. It's good that sometimes he recognised and admitted that he's not the same and causes problems. He's now a bit more open for me to get help and probably why he doesn't want me home with him all the time either. We agree that I go to work (oddly) early (for me), leave early and take a day off here and there seeing my boss understands my situation and doesn't mind me working long than standard hour and allows me to take time off for those extra hours I put in. I also try to let go a bit. I figure his brain is still well enough even though his memory and speech are deteriorate. I can't force him to do thing, not even taking medication. He believes he can look after his own medication and refuses to have too many Dex. He refuses to take Somac to protect stomach lining. It's like what my dad siad. You can take your horse to a river to drink water, you can't force it to drink. Well, we have a meeting with a palliative care next Monday. Hope it's not a waste of time. Also, I find this Commonwealth Respite and Carelink Centre Website, not sure what it is about. How does it work? Should I get in touch with them? Take care everyone, and thanks for your support.

[rarsie]

Hi peanutz You know what makes me mad, when my friends are in need I am the first cab off the rank. They all say "let us know when you need me for anything " then when you do its oh sorry I cant but tommorrow I can """WELL HELLO I DONT NEED YOUR SUPPORT TOMMORROW""" True friends are like diamonds special but rare, false friends are like pebbles found everywhere Sandra is thinking of you take care

[SILLY]

I hope the palliative care team can help make your life and your partner's easier . I don't know anything about the Cenrelink help or respite care but I suggest you do get in touch with them to find out if they can give you any assistance . All the best .