Hi Amelia Jane, I also had people ask when my husband was diagnosed with cancer and I guess they just don't realise what an emotional question that is. We push ourselves to deal with the present and give our loved ones all we can. We don't want to think about the future. I actually had people tell me that I was in denial because I refused to talk about the future. What will be will be, you can't change it so accept it and live each day to the fullest with your loved one. Make every day special. Some people don't like to ask the doctor how long and that's their choice. I don't like surprises so I asked and was then able to plan - wills, power of attorney etc. This enabled me to have some control of the future. Also knowing so that family can be told. My dad died in 1981 of cancer and my mum chose not to tell us how bad it was. I remember questioning this decision for years after that, because if I had known I would have spent so much more time with him. Decisions are complex. I wish you both luck on your journey. Laugh, share, love. Virginia xx ... View more

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 ... View more

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 ... View more

Hi Geoff, I work in dementia aged care so am aware of the impact of the full moon on behaviours. Full moon certainly brought out the crazy in me last night. I went to bed after my last blog so didn't see your phone call offer till today. But that was probably a good thing as I was not in a good place last night. Nick would not want me to be like that. I would like to chat though. Virginia x ... View more

Thanks Geoff. Seeing psychologist yesterday uncovered those raw emotions. Today is a new day, the sun is shining, a new beginning. Fake it till you make it. I really appreciate your support. Virginia x ... View more

Thanks Geoff x ... View more

I am having a bad night and feeling vulnerable. Saw a psychologist today and she said when you share everything with your best friend that is good. But when your best friend is mentally and physically declining toward death and you are caring for them, who do you confide your worries with. Nick denied death and could not come to terms with it. His confusion escalated in the last week and he tried to escape at night with me trying to calm him and keep him inside, dead bolting the doors and hiding the keys. He wanted to " go home" run from the inevitable. I cannot remove his terror from my mind. ... View more

Having a hard time making sense of life. Moving forward after death is so hard. Being the sole bread winner. Coming to terms with life alone. No longer a couple. No shared memories. Creating a life alone. A new identity. God give me strength. ... View more

Hi Geoff, Thanks for the recommended book Levels of Life. Read some good reviews of it online. Can't wait to read it. Another review I read was of The Year of Magical Thinking by Joan Didion. She deals with her grief after the sudden passing of her husband from a heart attack. Although it is a different disease, death and the associated emotions of grief are the same. I feel her poignant description in discussing her grief - "the unending absence that follows, the void, the relentless succession of moments during which we confront the experience of meaningless itself". She saw herself in others who had experienced death of a loved one and recognised "the look of vulnerability, nakedness, openness, invisible nature". Interesting to think that you and Nick may have crossed paths during your time in Coogee. Stranger things have happened! South Coast does have a wild and rugged coastline very reminiscent of South Wales. Nick and I complimented each other well. He loved the rugged beauty of waves crashing against volcanic headlands, while I loved the serenity of still waters -lakes, rivers and inlets. Our holidays usually combined them both. On our last holiday, we drove to Old Bar and came down the coast where Nick could satisfy his soul with the relentless sound of pounding waves on headlands like Crowdy Head and Seal Rocks. I could also enjoy the calmer waters and beaches of the Central Coast. I remember we had stopped at Foster for morning tea on our way home. We walked along the entrance and I will never forget the childlike excitement on Nick's face when a pod of dolphins swam right past us and down the inlet, so close we could touch them. Beautiful! Hope you are having a happy Anzac day. I'm heading off to work now. A welcome distraction from thoughts. Virginia x ... View more