GBM carers - To work or not to work?

[tropical]

I'm really interested in whether GBM carers work given the dire prognosis. I have taken leave from work for 3 personal and practical reasons. 1. To spend as much time as I can with my husband 2. We have to travel for treatment/tests/review 3. We never get any warning when something goes wrong, so I'd be unreliable (4 problems so far) The problem for me is I love spending time just chilling at home in regional Queensland and being able to spend time in Brisbane with our son who lives there. Unfortunately we've missed our opportunity to trave too far. I also want my husband to survive as long as he can. However, the longer I'm not working, the harder it will be to return regarding maintaing professional currency. While my husband's alive, we have no problem due to his income protection insurance which will continue until age 65. He's 52. The problem will be if he dies sooner than later - the sad reality. I'm a little too young to retire and I'll still have dependant children. Thank you

[Trish]

Hi Tropical, I am a full time carer to my husband. Nigel was diagnosed last August 13 on his 50th birthday with a GBM 4 and since then have not gone back to work. I work for a large corporation and lucky to have a very understanding boss. I am on leave with full pay. We are now in the final stages of this disease. Fighting hard and enjoying our time together while we can. This tumour is very aggressive and no treatment has slowed it down as it keeps on growing and seeding in other parts of the brain. We are realists and opted to cease all treatment to have quality time not quantity. Hugs all around. Trish

[Trish]

August 13 should be August 2012.

[tropical]

Hello Trish, Thank you for your response. I also work for a large organisation and I have very supportive managers which really does help. This disease complicates life so much, I can't imagine working, so I was curious to see what others did. I'm sorry to hear your journey has proceeded at a faster rate than ours. My thoughts are with you and you husband.

[jobeth]

Hi, We are at almost 4 years since my husband was diagnosed with a grade 4 GBM, we too are in final stages of the disease. We have income insurance for my husband however I'm still in my early 40's and work in a senior exec capacity. Although the company are sympathetic to our situation I understand the need for them to have a return on their investment in me. Additionally, when my husband dies there is no financial payment coming to me, we are a second time round marriage, his son is his benefactor so you see, I have to work. It's hard, I'm only just holding on. Last Friday we met with the Palliative care doctor who informed us, of all cancers, primary tumour has the highest "burn out" rate for carer's - fantastic!! Enjoy your time with your husband, while you can, it's precious. Jobeth.

[Mango]

It's a tough choice. I am working, and taking time off when needed. I feel a bit guilty not giving up work but have not had to so far as my husband can look after himself. It is my thing too, gives me time away which can help keep it all together, sometimes it is really hard to manage though.

[tropical]

Thanks Jobeth and Mango, As well as the highest burn out rate for carers, you've probably heard it also has the highest impact on family income! I'm thinking of you both.

[Minx]

I've been a stay at home mum on and off for the last 15 years. When Pete was diagnosed we were moving interstate and I haven't worked since then. He was fortunate that his employer rescinded his resignation and took him back. This brought great peace of mind to our financial security. I couldn't now take a job that I would only have half my mind on, work can wait. No one should feel guilty for whatever way they deal with this, you have to do what is right for you and your circumstances. Of course I do feel guilty as I watch Pete trudge off to work, but that is what he wants to do. Min

[tropical]

Hi Minx, It's amazing your husband CAN work. That's fantastic. What a lovely employer your husband has. My husband's employer is great also. As is mine. I can access a 6 month carers payment through our health insurance. Once my leave dries up, we'll apply for that. I have a horrible feeling things are on the move in my husband's head...Looking forward to MRI next week to be proven wrong! Yes, work really is out of the question for me.

[Minx]

t really is his outlet, so each day I hope all goes well as I watch him walk off for the train. Good luck with the MRI it is a terrible wait. We are just about to head off for Pete's MRI right now, have to wait till Friday for results. It will be a very long week.