The story of Beyond The Clouds
Hello, I’m Katie the founder of Beyond the Clouds! I want to provide some insight on how a 25 year old became dedicated to providing support for terminally and chronically ill, hang in there its a bit of a long one but worth the read!
If you have found your way to this website, it might be safe to assume you find yourself or your loved one in a life changing circumstance. I’m sorry for the reason why you are here, but I am glad I can offer you support during this time from someone who truly has been there. There is a safe and loving community here to welcome you with open arms.
In the cherished photo above I am on the far left, surrounded by my incredible sisters, darling nephew, father and amazing mother. I am the eldest of five girls and this was my sisters wedding day! This day was FAST TRACKED and by that I mean, my mother was sitting on the lounge a week to the day prior and said to my sister “ I want to see you get married before I die”. Next thing you know, we all rallied and pulled off what we thought would be the impossible! By the next week my sister walked down the isle to her husband, looking like an absolute vision with our nearest and dearest present. It was a magical, dream wedding day that we all hold close to our hearts, bitter sweetly the first and last wedding day our mother would ever attend for one of her daughters.
Our mum, Jodie passed just three months after this photo. Jodie was taken from us far too soon and painfully by stage four cervical cancer and kidney failure at the young age of 48. Jodie was diagnosed in February 2017 and passed 25 February 2018. The turmoil and struggle that plagued our family and continues to in our grief motivated me to fill the gap in support we experienced for terminally ill and their families. You never want to know or can begin to imagine what it is like to care for someone while they are dying, let alone the woman who brought you into this world, who you still rely on to care for you . Jodie was Inhumanely taken from us piece by piece.
Jodie was (and still very much is to us) such a an incredible role model, pillar of strength and bright light in our lives. Jodie was an incredibly vibrant woman, she would give the shirt off her back to anyone who needed it, she devoted herself to community and disadvantaged youth in schools. She took a special liking to the ‘naughty ones’ . She had a wicked sense of humour, funny and mischievous. She would move heaven and earth to be at everything we did. She loves and protects us at all costs, we can always count on her to be there. She loved being a grandmother. She was a loving friend, bending over backwards for everyone, grateful to be loved by her friends and generous in reciprocating it. Knowing her meant you always had a safe place and shoulder to cry on.
Our experience as a family with the health system during her care in her final stages of life was a testing one. The doctors made mistakes that threatened her life far before she was nearing the end and the social work system is so overwhelmed my sisters, mother and I really did fall through the cracks. However due to the beautiful nature of our mother she befriended the truly incredible nurses at the hospital she frequented and quickly became one of their favourites. She kept her spirits high despite her own health at times being so dire. The nurses really were our saving grace during this time. We constantly asked, I begged to know what support was available for us, mentally, physically? We would’ve been so grateful for anything! The inundated system had no time or space for us it seemed. Here were 5 young girls, myself working full time, one raising her son not even 1 at the time and the younger three girls in high school trying to keep there mum alive, as healthy as possible and at home. She required CONSTANT care 24 hours a day as she deteriorated which involved administering a plethora of medications, cleaning of tubes, checking and changing dressings, preparing meals, shopping, everything was on us. The medications changed weekly, dosages changed, one stuff up and the consequences were dire. I don’t know about you but I don’t know many 15 year olds that know how to safely inject the right amount of morphine and at the right time to someone. At that age I still read the back of the Nurofen box to know how many were okay to take for a headache!! My youngest sisters shouldn’t of needed to know how to do this but here we were taking shifts, myself typically during the day working from home and caring for mum. The twins would come home from school and take turns on the night shift, staying up all night in case mum needed anything. My sister and her husband unable to create a routine for their baby as any spare time they had was spent keeping mum company and contributing to her care. All of us terrified that at any moment we looked away or took a break and we would come back to find her lifeless. The at home nurses came sparingly throughout the week and acted clinically, they came in did what they had to and were out of there before we could offer them a tea.
This is the horrible and scary reality for Young Carers in our position, it was all we knew for a whole year. While we cared for mum all she cared about was us. She asked me to make sure we would be okay and I tried. Mental health back then and especially in our family was not something comfortably spoken about, despite it not being articulated it was glaringly obvious the toll this was taking on all of us! I reached out to our social worker, countless times for guidance and support on how to get my mum and my sisters counselling in the least! In the entire year my mum was diagnosed as terminally ill, the counsellor found time to speak to her only twice. When facing the end of her life was all she was afforded was 2 hours of there time. We were at the hospital every single day, having tough, confusing conversations with her care team. They knew how young we were, they knew we were doing it alone and not one could answer where I could go for help.
I hope every single day that I don’t find myself in the position again where I have to deicide and tell a loved one that the end is approaching and its time to go to palliative care. I was only 22 at that time and it will haunt me for the rest of my life. My mum was very much in denial of the state she was in and due to the medical mishaps we had experienced, she was terrified of going back to anything that involved medical professionals. Going to palliative care meant admitting to herself and to us that this was it. What mother wants to leave behind her 5 young daughters? Not mine, that is for sure. The last few weeks and days at the time felt like they stretched out painstakingly slow, sitting by her bedside hanging on every movement from mum to see if she was lucid or awake. By this time she had lost her voice and her energy was sparse. We would dab her mouth to keep it moist, adjust the pillows to make her even a fraction more comfortable. We didn’t know what to do with ourselves, from life being so chaotic, so consumed with our caring roles to now being forced to stop, slow down and wait for the end of a story we never wanted to finish. The pain is still raw and I am triggered by the memory of it. I can still picture vividly the day we got the call that this was it… It was the only night no one had stayed with her, we needed a break. She passed alone, despite us all racing to be there. We had been there every second of every day waiting for that moment. It came and I still don’t forgive myself for not being there. The sound of our pained wailing at seeing her body, rings loud and clear in my ears to this day.
Navigating grief not only through my own experience but sharing it with my sisters has truly emphasised that everyone’s experience is very unique. This experience and my grief has completely changed my life and who I am as a person. I used to be carefree, lived a typical early 20’s life where socialising and travelling was all that mattered and was on my radar. Now that looks very different, I love to socialise and travel but it has different intentions. I am dedicated to serving community and using my experience to support others. I volunteer around Australia mentoring grieving children at bereavement camps and have travelled to the USA to do the same. I volunteered in palliative care writing life journals for terminally ill. I work at an organisation supporting Young Carers and in disability support work. To me now, meaningful work and connections is everything. I am inspired daily by the big heart and kindness of my mother and aim to be half the woman she was and still is to us. I feel privileged and honoured to of done and continue to do the work and volunteering I do and I don’t see myself giving it up anytime soon. It is from the culmination of my own experience, exposure and the insight I have gained from supporting others through their journey that I can identify where the gaps in support really are.
As you might gather from the small snippet of our experience shared here, we were so consumed with the medical side of the end of my mums life, the fear and denial that we didn’t have space or capacity for much else. There is so much regret that clouds my mind and heart in hindsight of our experience. I wish I asked her more questions about her, about us as children, about what advice she would give us for the future. I wish I captured her voice before she lost it. As time goes on and my memory fades, being able to hear her say ‘ I love you’ in her own voice would be everything. To be able to keep her alive in more than just our memories or stories, especially on occasions like the anniversary of her death, her birthday, holidays and future milestones would be priceless. We unfortunately never get that time or opportunity back.
My dedication and passion is unwavering in reducing that regret for others and filling the gap in services available when facing the end of life for both the ill person and loved ones. At the time of writing this Beyond the Clouds is currently a podcast and offers life story recording. In the future Beyond the Clouds will be the first wholistic support service for terminally and chronically ill and their loved ones. Beyond the Clouds is dedicated to giving a voice to those facing the end of life, giving them a platform to share their story, feelings, wishes and regrets in ways they may not necessarily be able to with loved ones directly. For those where time is running out so much sooner than they'd hope, thinking about the limited future they have can be heart breaking, it is important to celebrate and reflect on the life they have already lived.
In loving memory and honour of Jodie Lee Brownlee 25/03/1970 - 25/02/2018. Taken to soon but you live on in us every single day. The day we lost you the world lost someone special. In our memories and in our lives we will carry her with us ALWAYS. As long as we live so does she in us. Our relationship is not over with you, just changing and you will be our mum forever.