The love I lost and the knowledge I gained

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The love I lost and the knowledge I gained

Lucy Walsh with her husband Alex

Through my training as an End-of-Life Doula with The Australian Doula College (ADC) I gained the confidence and knowledge to know what I could do to make my husband’s home death as comfortable as possible. I also thank Alex, the medical team and so many people. Looking back over the last 365 days I reflect on how much has happened and how quickly life changed for my husband and I and the many people around us.

In 2022 Alex’s health took a turn for the worst as he transitioned from MDS (Myelodysplastic Syndrome) to Acute Myeloid Leukemia. This was a huge blow for us as we tried to come to terms with the fact that only 26 per cent of people are still alive after one year. We are not old; well we didn’t think we were.

He was transfusion dependant at this point receiving three units of blood twice a week. “This will stop working,” the specialist announced, and she was right.

Transfusions began to have less of an impact on his life and it was obvious he was deteriorating rapidly. The specialist visited us in hospital at his last transfusion and explained to us that he was at the pointy end of life, and he may have one to two weeks left on this earth.

Alex’s wish was to die at home, so we began to navigate our way through unfamiliar territory by putting things in place. Earlier in the year, in preparation, we engaged the Eastern Palliative Care team to get onboard, completed an Advance Care Directive and revisited his will.

I watched my life partner put his decades of learning inner reflection to constant use. He remains my greatest teacher in this area.

I was taught the tough lessons that one can only learn fully and deeply at the front line. In the last two weeks of his life, as confronting as it was, we were given the opportunity to reminisce the many adventures we had travelling and the wonderful 21 years we spent together.

For those last moments we simply lay together completely present in each moment with so much love and devotion.

Researching each module in my training as an End-of-Life Doula, reading stories, listening to podcasts and exploring resources within my own community helped develop my knowledge, which I continue to embrace in the knowledge it will never be finished.

There are so many different options available where we can be more involved in the dying, the death and the funeral and yet we aren’t encouraged to do so.

Funeral directors can give you the ‘norm’ in funerals and some doctors and specialists discourage dying at home as it’s all too hard. What I say to that is….. poppycock!

But for the average person who doesn’t know what to do or doesn’t have the confidence I can understand why they follow what they are being told. This is where we as Doulas come into play.

Sitting in on a video conference with the ADC about dying options led me to “The Last Hurrah” girls. I am so grateful I joined that meeting as they were wonderful in helping me put together everything Alex wanted. It was an amazing celebration of his life and one I will always cherish.

Through this whole journey Alex continued to be in control of his treatments and care, and even his death. To his credit he also made choices for his funeral.

Alex chose his own music and photos and the coffin he wanted. He wished to be cremated and purchased a plot at the cemetery. It was empowering for him, and he didn’t want to burden me at the time of his death.

Caregiving for me was a faithful journey that tested every part of me morning to night. It was a constant expression of love, patience, humour, desperation, worry and accomplishment. I never questioned keeping Alex at home and never questioned my devotion. I don’t look upon myself as a hero, rather he was the hero. He led the way in this journey with humility and gratitude.

In our own bed I held Alex as he took his last breath, and as hard and sad as that was it was also a very profound moment. I was able to show my love for him, during his dying time, to the time of his death and this continues to this day. I felt blessed to have the strength to honour his wishes.

My final ritual for Alex was to lovingly bathe him and dress him preparing him for his final journey. When I saw Alex, there was no discomfort only a peaceful calm around me.

As I gently washed his body I spoke to him, just being present, honouring him and loving him physically for the last time. A meditation of me honouring with deep love, gratitude and respect for a man who now remains within my heart and mind forever.

My biggest challenge was and still is learning to be still and in the moment. Accepting what the reality of the situation was and is and knowing I cannot change what has happened, finding a way to work through the grief as best I can and learning to recreate myself moving forward.

Many people before me have experienced the loss of a loved one and many more will experience it in the future. We are not alone.

We as a valuable caring community are joined in grief because we have loved and that creates a bond with each of us. This is now my path, to educate to guide and support people facing one of the most challenging times of their lives. Truly you are not alone. There is a lot of help available, you just need to know where to go and who to ask. Which is why I am stepping forward, to serve my community.

From this experience my life has dramatically changed, but the one thing that stands out for me now and for my future is how I want to share my experience and knowledge as an End-of-life Doula with others as they navigate their journey through illness, dying and bereavement. I want to support them with compassion and lived understanding as they muddle through one of the hardest times of their life.

As a community we all have valuable skills that can be shared to make another’s living and dying experience the smoothest it can possibly be.

So, I encourage everyone reading this to start and keep talking about what matters most. I believe that talking about our end-of-life wishes and what matters most to us can make life so much easier for those we leave behind.

For advice, tools and support with 'matters of life and death' click HERE