GBM carers - To work or not to work?

[pdh]

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".

[Virginia.F]

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

[tropical]

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!!

[husbandhasGBM]

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.

[husbandhasGBM]

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.

[Melanie]

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

[husbandhasGBM]

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.

[tropical]

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.

[storm]

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

[Virginia.F]

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