https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11206#M1286 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. Sat, 13 Apr 2013 04:02:47 GMT tropical 2013-04-13T04:02:47Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11203#M1283 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 Fri, 12 Apr 2013 01:24:34 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11203#M1283 tropical 2013-04-12T01:24:34Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11204#M1284 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 Fri, 12 Apr 2013 03:23:16 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11204#M1284 Trish 2013-04-12T03:23:16Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11205#M1285 August 13 should be August 2012. Fri, 12 Apr 2013 03:24:20 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11205#M1285 Trish 2013-04-12T03:24:20Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11206#M1286 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. Sat, 13 Apr 2013 04:02:47 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11206#M1286 tropical 2013-04-13T04:02:47Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11207#M1287 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. Sun, 14 Apr 2013 12:11:06 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11207#M1287 jobeth 2013-04-14T12:11:06Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11208#M1288 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. Sun, 14 Apr 2013 12:37:55 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11208#M1288 Mango 2013-04-14T12:37:55Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11209#M1289 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. Sun, 14 Apr 2013 21:39:59 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11209#M1289 tropical 2013-04-14T21:39:59Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11210#M1290 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 Mon, 15 Apr 2013 04:26:08 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11210#M1290 Minx 2013-04-15T04:26:08Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11211#M1291 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. Mon, 15 Apr 2013 06:49:30 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11211#M1291 tropical 2013-04-15T06:49:30Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11212#M1292 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. Mon, 15 Apr 2013 08:14:40 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11212#M1292 Minx 2013-04-15T08:14:40Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11213#M1293 You must do what is right for your own situation. There are probably no two situations the same in this world of Brain Tumours. My daughter has a grade 2 Oglioastrocytoma in the right front parietal lobe. It is inoperable because it is to close to vital brain tissue which governs everyday life. Surgery would paralyse her down the left side of her body so she had Radiation. Chemotherapy will probably be used down the track . She now has the dreaded 6monthly MRIs. As a young mother of 6year old twins and a 5 year old she has her hands full. She and her. Husband run their business , this has been a juggle act as her memory is no good as a result of the radiation so she takes care of the children building memories for the future for them. Her husband does hard physical work but is wonderful and never complains. He works in well to help her as chronic tiredness also as a result of the radiation knocks her around. As she lives in central Qld I fly out as often as I can as I live inBrisbane. Between us we manage. They have to work as most people do as there are no good fairies for any, if only. No one should ever feel guilty about the decisions one has to make. As the old saying goes"Walk a mile in my shoes". Fri, 26 Apr 2013 09:08:08 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11213#M1293 pdh 2013-04-26T09:08:08Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11214#M1294 Hi Tropical, My husband passed away in Jan 2013.I tried to stay at work for as long as possible for financial reasons and helped Nick fill in loads of forms to say he would die within 12 months so he could access his super. It was a difficult time but after jumping through hoops he eventually got his super and was given disability pension. I had to quit work as they refused me leave without pay. It was too exhausting to work, take time off for radio & chemo plus clinical trials plus care for him and manage his seizures. I went on carers pension and carers allowance. It was the best decision I made and I have no regrets that I didn't spend enough time with him before he died. We shared many happy memories and plenty of sad ones too but we got to experience it all together. There is no turning back time. You only get one shot at life and I will forever cherish that time we had. Hope this helps Virginia x Sat, 27 Apr 2013 10:38:05 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11214#M1294 Virginia.F 2013-04-27T10:38:05Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11215#M1295 Thank you for your input pdh and Virginia.F. I really appreciate your comments. The question, although posed only a couple of weeks ago, is irrelevant for us now. I will not be returning to work until...... The MRI revealed the presence of multiple sattelite tumours - inoperable. Stereotactic radiosurgery was not feasible, so my husband will begin Avastin. Here's hoping!! Sat, 27 Apr 2013 12:56:10 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11215#M1295 tropical 2013-04-27T12:56:10Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11216#M1296 My husband was diagnosed in December 2012 with a GBM, inoperable. He had 5 weeks of stereotactic radiation, ending 20 March, which we had to go to Sydney for. I work for myself writing reports, which I do mostly from home (at least two thirds I can do at home, but the other third is face to face and there is no flexibility in the timing). I have been able to keep doing some work, but because of the inflexibility of the face to face time, I'm reluctant to commit, when my reliability is what gets me repeat work. I could give up completely until .... and pick it up again at that time reasonably easily, but financially we rely on my income. My husband hasn't been able to go back to work, and although he is still on full pay (and his employer will continue to pay him even when he runs out of leave), that will reduce by 20% soon. On top of everything else it's unbelievably painful to make this decision based on money, but you can't live on love alone. I applied for carer payment (the 50 odd dollars a week that is not assets tested) but my application was rejected on the grounds that my husband is not sick enough. I'm not sure how sick you have to be, but he has no use of his left arm, walks with a walking stick because of partial paralysis down his left side because of the tumour (a remant of the biopsy that wasn't even successful in getting pathology - but that's another story), his memory is shot, if I don't give him his pills he either doesn't take them or takes them and some of the other in the box I sort them all out in, and can't do anything in terms of cooking, driving, washing etc. If I could get the carers allowance I would be able to give up work, but given I'm not even eligible for the carers payment it is unlikely to be an option. Because I can do some work from home I'm going to have to keep going but it feels like I'm not able to spend any quality time with my husband because by the time I've finished all the housework/cooking/driving the kids around etc, etc, then have done my work, there just isn't time. Our time in sydney was actually really lovely because it was mostly just the two of us and other than treatments we didn't have to do anything. Sat, 27 Apr 2013 13:47:10 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11216#M1296 husbandhasGBM 2013-04-27T13:47:10Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11217#M1297 My husband was diagnosed in December 2012 with a GBM, inoperable. He had 5 weeks of stereotactic radiation, ending 20 March, which we had to go to Sydney for. I work for myself writing reports, which I do mostly from home (at least two thirds I can do at home, but the other third is face to face and there is no flexibility in the timing). I have been able to keep doing some work, but because of the inflexibility of the face to face time, I'm reluctant to commit, when my reliability is what gets me repeat work. I could give up completely until .... and pick it up again at that time reasonably easily, but financially we rely on my income. My husband hasn't been able to go back to work, and although he is still on full pay (and his employer will continue to pay him even when he runs out of leave), that will reduce by 20% soon. On top of everything else it's unbelievably painful to make this decision based on money, but you can't live on love alone. I applied for carer payment (the 50 odd dollars a week that is not assets tested) but my application was rejected on the grounds that my husband is not sick enough. I'm not sure how sick you have to be, but he has no use of his left arm, walks with a walking stick because of partial paralysis down his left side because of the tumour (a remant of the biopsy that wasn't even successful in getting pathology - but that's another story), his memory is shot, if I don't give him his pills he either doesn't take them or takes them and some of the other in the box I sort them all out in, and can't do anything in terms of cooking, driving, washing etc. If I could get the carers allowance I would be able to give up work, but given I'm not even eligible for the carers payment it is unlikely to be an option. Because I can do some work from home I'm going to have to keep going but it feels like I'm not able to spend any quality time with my husband because by the time I've finished all the housework/cooking/driving the kids around etc, etc, then have done my work, there just isn't time. Our time in sydney was actually really lovely because it was mostly just the two of us and other than treatments we didn't have to do anything. Sat, 27 Apr 2013 13:47:24 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11217#M1297 husbandhasGBM 2013-04-27T13:47:24Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11218#M1298 Even though my path is on the opposite scale, I am so grateful I was on maternity leave when my husband was diagnosed- I look after a 1 yr old, a 4 yr old & care for my husband who has a grade 3 astrocytoma. His is also inoperable, has had 6 weeks of radiation & in 2 weeks will start round 5 of chemo. It's been a year since diagnosis- and only now am I making clear decisions- but there would have been no way I could have functioned at work- So my hat goes off to any of you that can continue to work. We have a tough road ahead, smile, laugh & enjoy whilst you can. Sit in the sun, go & have coffees down at the coffee shop, walk the beach together. Worry about the job situation when you need to, there are always options. xx Sat, 27 Apr 2013 14:34:39 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11218#M1298 Melanie 2013-04-27T14:34:39Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11219#M1299 I agree, the centrelink forms are ridiculous, and the advice is inconsistent depending on who you speak to. Carer payment is not income/assets tested, it's just 50 odd dollars a week to help with incidentals of caring. I was supposed to be easy to get, but I can only assume that the doctor who filled out the medical part of the form didn't do much of a job of it. Don't worry about trying to put a positive spin on it for me. Honestly the last couple of days have been really shitty, and frankly my brave face has started to drop a bit, hence why I joined this site. I'm a bit tired of people saying how good my husband looks or how he seems better since we finished in sydney - I'm starting to wonder if I'm being really negative, so please don't try to be positive on my behalf. I came here to drop the brave face completely and just be honest for a change without feeling like I have to pretend to anyone. Take care. Sat, 27 Apr 2013 14:43:52 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11219#M1299 husbandhasGBM 2013-04-27T14:43:52Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11220#M1300 Welcome husbandhasGBM. How ridiculous that your husband wasn't considered unwell enough. It's GBM for goodness sake! Could it possibly be that you didn't qualify because you were still working? i never bothered applying but I've thought about it recently because my leave runs out in a couple of months. To be perfectly honest, I'm worried about the wretched forms. I hate completing the salary continuance forms on behalf of my husband. We're trying to live a 'normal' life yet these forms make us list all the problems he's having. Thank goodness my children are older than yours. I can just sit around in my stressed state!! (How much our lives have changed. We used to work long hours and were highly motivated busy, active people. Now, even after all this time, I feel like a wounded animal who needs to retreat to their den.) Our youngest child is boarding as it provides her with stability in her final year at school. Our other daughter finished year 12 last year - we had to desert her for months when my husband was diagnosed. We have no family in Queensland. She's taken a year off and will study at UNE next year. Our 20 year old son is in Brisbane, so we're able to spend time with him when we're in Brisbane. There has to be one positive aspect of this muddle which has become our life. Reading back this post, it seems really negative. I, like everyone else, put on a brave front when I'm out. It's a really sad time though. I'm guessing I'll be a widow in time for our 25th wedding anniversary and my 50th birthday :(. Every tumour IS different, so please don't let my reality bring you down. I wish you and your family all the very best. Sat, 27 Apr 2013 15:19:16 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11220#M1300 tropical 2013-04-27T15:19:16Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11221#M1301 We all do that to various degrees, struggle to find the "right thing to say" and you get confronted with having to deal with the lie, and what is your immediate future, each time. So what best works for you. How will you deal with us as we ask these inane questions and platitudes Agggh another question......Have you a palliative care team, they can organise some respite. I live in Forster and the team here were excellent I doubt I would have survived without their care and help. Meals on wheels the food is OK but by having this you can free up a lot of your time. $7.50 per meal (was 6 months ago) Biggest problem was being at home when they called (someone has to be there to receive the meal or you need to cancel the next day before 10am? - forgotten)). Make enquiries even if you reject this at this time Just having the knowledge that you can access some help can relive some anxiety associated with the spiral you are on Geoff Sun, 28 Apr 2013 01:10:58 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11221#M1301 storm 2013-04-28T01:10:58Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11222#M1302 Hi, You can get any doctor to fill in the form, again. If he is not cognitively aware to take his tablets then you are caring for him in the Centrelink definition of caring. You can appeal the decision. It is a shame they make it so hard. My husband used to say he was the fittest sick person he knew. While they appear normal to others the GBM is behind the scene doing its dirty work. My brave face was always shown for Nick. As he deteriorated I broke down only once and he could not understand with his declining comprehension. He kept saying sorry which made it worse. I vowed he would never see me like that again. So after hectic days and sleepless nights coping with his wide awake Dex state (24mg for seizures & swelling), sleep deprivation and working on autopilot became the norm. It is funny to look at times of posts here. I can relate to so many carers online after loved one's finally fall asleep, or the sleepless nights that follow the loss of a loved one. A time for yourself to cry, to get support from others,to figure out plan 200 of attack, to co ordinate tomorrow, to pray or just to chill out in the wee hours of the morning. This time alone helps to clarify things, helps recharge you for another day, helps you to release the frustrations of the whole story - it's not fair, we had plans, we should be growing old together, how will I cope, how can I go on without them. Please know that we care and support you on your journey. Virginia x Sun, 28 Apr 2013 04:03:02 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/GBM-carers-To-work-or-not-to-work/m-p/11222#M1302 Virginia.F 2013-04-28T04:03:02Z