Alia's story

“A lot of self-care is very important, to be able to sit, to cry and to talk… to be able to speak to someone who can give me some strength.”

Geraldine's story

“I couldn’t even string two words together. I just felt that I had nothing left to give… In fact I probably had a mini-breakdown at that stage because I just didn’t know if I was coming or going…it was quite a lonely place.”

Beate's story

“There’s no formula. It’s an individual, unique journey. But people need to know they’re not alone, and they need to take care of themselves.”

Alia's story

“A lot of self-care is very important, to be able to sit, to cry and to talk… to be able to speak to someone who can give me some strength.”

Geraldine's story

“I couldn’t even string two words together. I just felt that I had nothing left to give… In fact I probably had a mini-breakdown at that stage because I just didn’t know if I was coming or going…it was quite a lonely place.”

Why?

Time to Share is shining a light on what it’s really like to care for a loved one who’s dying. It’s a place where carers tell us the highs and lows of their experience as well as exchange information and advice.

At Time to Share we want to help people – those dying and those caring – have more control over the ‘what, where and how’ of dying.

Understanding those choices can give people more quality time together – so important when there may be precious little time left.

The first step to taking more control is to talk about what happens, like the carers who’ve spoken with such honesty here.

Watch what they have to say. Leave a comment. And please share your story, too.

Stories

Every day thousands of Australians are devoting their lives to caring for a loved one who’s dying. They’ve shared their experiences here in the hope of helping others.

Geraldine’s story

Geraldine cared for her daughter, Lisa, who died at the age of 34 after living for 5 years with a rare form of stomach cancer.

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Alia’s Story

Alia Elalii’s mother is 61. She has late stage emphysema as well as cancer. Alia cares for her mother at home because she doesn’t want her to be moved to a nursing home or hospice.

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Beate’s story

Beate Steller cared for her mother, who died from pancreatic cancer aged 74.

Beate’s mother died in her bed surrounded by her family.

The experience changed the course of Beate’s life. She now works with carers and people approaching the end of life.

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Welcome from Melissa Reader

Huge thanks to Geraldine, Alia and Beate who’ve opened up with such honesty about their experiences.

This initiative is so important because it lets us break the silence about caring for someone you love, by sharing candidly with each other what that’s really like.  It’s something you can’t really know unless you’ve gone through it yourself and lived the rollercoaster of the emotional highs and lows.  Sometimes it’s so hard just coping that you can’t even do something as basic as finding out the services that could help you cope.  We hope that this site – and the community that comes here  – will remedy that.

As the CEO of LifeCircle, the organisation behind Time to Share, I’m really proud of our professional heritage as mentors for people who are caring at the end of life.  Our aim is to make a profound difference to the experience of dying, for all parties involved.  Maybe there can never any such thing as a good death, but there are experiences which can be more meaningful and where people can be supported, rather than battling through alone.

In my own experience, caring for my first husband through his disease and subsequent death was undoubtedly the most overwhelming experience I’ve ever had…I was completely unprepared, and felt unsupported, and largely, alone.
No-one was able to talk to me openly about what was happening – about the fact that he was dying. Not his doctors, our families, and not him. I didn’t have the skills, or the strength, to try and open up this conversation, to talk about his wishes, his fears, his dreams for his children…so we never did. For a long time I felt bewildered about how this had played out – surely we could have done this better? It may never have been ‘good’ but it might have been better.

Reflecting back now, over 6 years later, I have a better sense of what we might have need to make our experience different, and possibly better. We needed guidance, support, and prompting, from people who had been through this before, who knew what was involved and who were willing to share their wisdom.

Through my work with LifeCircle, we’ve been able to create Time to Share. Time to Share is about people – and how we can help each other at the toughest time of life.  There’s no point trying to do this alone – it’s just too hard.  We look forward to sharing your stories and your personal insights, to begin to lift the burden for all of us.

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From our community…

We received the below heartfelt story from a young woman who cared for her dad and found it so hard to know where to get support. Please send us your story, too, because sharing will break the silence and help us make change happen…

Hi there,

I wish this had been created long ago.

I was my Dad’s carer for two years while he underwent treatment for stage 4 lung cancer. He passed away 3 weeks ago today. I was 22 Years old when I began caring for him as we lived together.

Throughout the last two years I have struggled to get information on so many things: what to expect as the disease progressed; what benefits and assistance I was entitled too; how to organise assessments from the Aged Care Assessment Team (ACAT); what an ACAT assessment even is; what to do once the time came.

I felt like I was hand-balled around between all the social workers who each just gave me a giant stack of brochures and no real guidance, all while I was still trying to work full time and care for Dad.

I felt like I was alone and other family members really had no idea what it was like. I’d never rung an ambulance in my life and in the last two years I have called about 10. I’ve woken up in the middle of the night to find my dad crying on the bathroom floor because he can’t get up. I’ve found him lying in the laundry unable to move himself out of the painful position and me not being strong enough to lift him. I had to stay on the phone as the ambulance came as suddenly Dad couldn’t talk and he started making up words and his eyes rolling back in his head. I’ll never regret all that extra time I got to spend with my Dad and I’m glad I was there to help him as much as I tried to.

Throughout it all, I often thought about other carers who are family members and who do it because they feel like they HAVE to. I didn’t feel like I was pressured into it, but when you’re the only other person who lives with someone who is ill, what else are you meant to do? Simply not help someone you love?

I had become exhausted and after Dad died I slept 18 hours straight. Suddenly it all hit me. I’ve never slept so much.

When people would comment on what a great thing I’m doing I would think “wouldn’t you do the same?” At the time I did what had to be done and looking back now I really don’t know how I got through it all. Death and dying needs to be discussed so much more. It’s ridiculous how it’s a taboo.

It’s a part of life and Australia needs to start discussing so we can look after our dying family members and friends and their carers in the way that they deserve!

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Debbie Wieck: from nurse, to mum, to carer

Debbie Wieck, has generously contributed her story of caring for her son, Jacob.  Debbie has so many insights which are valuable for others in the Time to Share community.

PART 1

As the old saying goes ‘once a nurse, always a nurse’ and ain’t it the truth. I loved being a nurse practicing for over 17 years but never in my worst nightmare did I think I’d have to use my skills to care for a loved one at the end of their life. And let me tell you: nothing prepares you for caring for your child who’s only 20 years old and at the end stage of their life.

Jacob accepted the news from the doctors that there was no more they could do with the wisdom, strength, bravery and patience of a man much older than his 20 years.  We sat in silence after the medical team had walked out of the room, stared at one another as mum and son and cried together.

Jacob was never one for needing to talk to specialised people about the way he was feeling. When he was asked if he wanted to talk to anyone, he’d always decline and say to me later: ‘we’re doing ok aren’t we mum, just you and me!’ Yes we made a pretty good team. But I did seek out other people to talk to. I needed to connect to other parents who had dealt with similar situations and scenarios. He knew I belonged to specific Sarcoma sites on Facebook and we’d read the positive inspiring stories together of people getting cured and getting on with their lives. Reading these posts gave us hope. It was when I was on my own that I would read the not so pleasant stories and begin friendships with parents online, comparing stories and asking for advice. I still have connections online with some of these people today. Social media has helped pave the way for those harsh and true experiences of the end of life stories to be spoken, heard and shared.

Debbie_3

PART 2

Jacob’s disease spiraled out of control when we brought him home from hospital at the stage where he could no longer walk, had no control over his bowels, bladder and new sarcoma tumours were appearing on his skull, sacrum and spine causing paraplegia. Pain was savagely invading everywhere else within his body in spite of his paraplegia.

I think this is where the nursing instincts kicked in and that of a mother tuned out, although I dearly wanted this role reversed.  Caring for your adult son came with awkward moments which led to his modesty flying out the window. As a young man he was never fond of the nurses offering him a bed bath. Before he had a catheter inserted I would have to help him position the bottle between his legs in order not to wet his bed.

From the time we brought him home to wrap up in love and make more memories to cherish and tick items off his bucket list our house was never empty. We had wall to wall mattresses that covered the floor in both the ‘good’ room and family room for his mates to sleep over on. When his mates were with him that was when I caught my breath. I caught up with a week of no sleep within a 7 hour shut-eye. I had purchased a new lounge with a fold out sofa bed next to his bed so we had easy access to those regular repositioning turns every night and to empty his catheter. During those quiet days we’d all snuggle up together on it and watch his favourite movies.

We were inundated with gifts from family and friends in the form of food and petrol vouchers from Woolies and Coles. We were given food hampers that people had put together as we always had a house full and people to feed. I don’t think I cooked a home cooked meal for the last month of Jacob’s life, we were blessed with other people’s family favourites. We kept an open house policy (except if you were unwell).

I was with him from the beginning of diagnosis, during treatment spending thousands and thousands of dollars in accommodation and travel expenses within the year to be with him and care for him in the final 37 days of his life at home.

I savoured those moments when I transferred him from the bed to the wheelchair as a mother and son cuddle, as he gripped his long skinny arms tightly around my neck, and I gladly took everything I could. Every touch, every look, every smile, every tear was etched deep in my heart to treasure.

Debbie_2

PART 3

Jacob created a bucket list to complete. We enjoyed everyday we were blessed with and made more wonderful memories to cherish.

It was gut-wrenching to watch Jacob as he was nearing the end of his life and there was nothing I could do. It broke my heart to think that he felt as though he needed to reconnect back to his religious faith in the hope that he would make it into Heaven, to forgive his sins to make it a peaceful transition.  He smiled as he said ‘I’d like to think I’m still a bit religious.’ How could God resist such a beautiful soul?

With my nursing background and great support from family and friends I didn’t utilise or even know about the extra assistance that was available for things like transport and the convenience of blood tests in your own home, so please ask about any assistance available and use it. Don’t be afraid to use it because that is what it’s there for.

I had cared for many people during my nursing career at their end of life as they took their last breath. I knew what it looked like and sounded like. But I was still so ill-prepared for seeing my beautiful brown eyed boy struggling and using every ounce of energy to draw air back into his lungs. This was not the image I wanted to imprint in my mind and that wasn’t how I wanted to remember him. I had to ring the nurse for my mum to ask her if he was supposed to be making that much noise, I needed reassuring too I guess. Yes, the noise Jacob was making as he took his last breathes was ‘normal.’

Nineteen family and friends gathered around and said their goodbyes to Jacob with words of love, hugs, touches, kisses, smiles and tears as his favourite songs were played from his phone.

Say all the things you want them to know for the last of the senses to go is ‘hearing.’ Let them know ‘it’s ok to go’ even though it isn’t.

Jacob remained on his bed in our home for another four hours. We clipped his finger nails and washed his hair, gave him a shave as he’d been out of treatment for a while and his facial hair was beginning to return. I still wanted to mother my boy any way I knew how. One of Jacob’s friends who was with us as he took his last breath, phoned his parents and the next thing we know is that food was delivered on our breakfast bar -hot bbq chickens, fresh bread rolls, potato bake and salad, which happened to be one of Jacob’s favourite ‘go to’ entertaining food. We sat with Jacob on his bed and on the lounges in the family room and shared his favourite meal amongst us all as we had in years gone by with constant chit chat and stories being told of Jacob to keep his spirit and memory alive. He is still with us in our hearts and with his guiding love from afar he is helping us to ‘smile’ again – see miracles in life everyday.

The end-of-life deserves as much beauty, care and respect as the beginning. I will quote some special words from a beautiful writer Lexi Behrndt:   “When a child dies, a parent is still tied to that child. Souls, tied together across universes. It doesn’t matter the age when they passed. It doesn’t matter how long ago it happened. It doesn’t matter – none of it. Their souls are forever tied. That’s the love of a parent. That’s the love that is more powerful than death. That’s the beauty of unconditional love.”

This is our story.

I saw Jacob’s first and last breath, although it was never meant to be that way. Jacob was here and his life should be celebrated, it won’t make me sad to hear his name mentioned, it is music to my ears.

‘Stay golden, Ponyboy’ (a quote from the movie ‘Secret Life of Walter Mitty ‘)
love mum x

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Who?

Time to Share is an initiative of Life Circle.  We’re a national, not-for-profit entreprise, working to change our society’s experience of, and attitude towards, death and dying.

We believe those caring – mainly family members and friends – should be able to prepare for their role with accurate knowledge about what lies ahead. And we believe that we as a society should better support people who are in this situation.

At LifeCircle we are designing new ways to help achieve this. We will have more news on these initiatives soon, but in the meantime we want to support people to talk openly and honestly about their experiences.  We see this an important step to helping us ultimately satisfy our deepest wishes at the toughest time of life.  

We are also working with technology to find better ways, not just to bring people together but to provide the practical help and support they need. Follow our progress.

LifeCircle is funded by organisations whose work intersects with ours. We are independent and receive no government funding. You can see more about LifeCircle and our heritage here: http://lifecircle.org.au

FAQs

Caring for a loved one who is dying is so important. It’s one of the most rewarding things you can do, but also one of the toughest things you’ll ever do. We want to ease the burden by connecting people so that they can share experiences, openly and honestly. Ultimately we want to make fundamental change to how we deal with dying as a
society, to give people the power to make choices.

Those who have a different experience of caring for someone who is dying, who were able to have the right conversations, and who were prepared for and supported in their role, will hopefully go on to share that experience with others in their friends and families. In this way we hope to see social change around these issues.

Share

We want to know your story and your views on how caring can be made better.

Maybe you’ve cared for a loved one who’s died?  Maybe you have hopes or fears, for yourself or others?

What you have to say really matters, so please tell us – even if it’s just a few words.

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If you are distressed by what’s on our site and you need urgent assistance please consider calling your local hospital or your GP.  If you are in serious distress or feeling you can’t continue, please call Lifeline on  13 11 14 or Beyondblue 1300 22 4636

If your need for assistance is less urgent please email us here and we will respond as soon as we can.  We are only able to respond in working hours.

LifeCircle Australia Ltd is a registered charity.
ABN. 95 267 224 727