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End of life lessons to live by

In March 2018 I was honoured to make the key note address at the Institute of Managers and Leaders International Women’s Day event in Brisbane. The title of my address was “Inches not Miles” with a copy of the speech posted here on LinkedIn. I had included the story of my mother who had to resign from a job she loved, in the late sixties, because she got married. I had invited my mother to attend that day and looked at her proudly watching me as I spoke to the over one thousand people in the room. The photo above is a photo from that event. Little were either of us to know how much life would change only a few months later.

In June 2018 my mother was admitted to hospital and after seeing multiple specialists she was diagnosed with Giant Cell Arteritis (a form of vasculitis). If you are like me you won’t have heard of it until that point. The doctors threw all they had at it but unfortunately mum had a very aggressive version of the disease and in December 2018 she made the decision to enter palliative care. She was in extreme pain and her physical ability was now limited with her unable to walk. I used all annual leave, carers leave and long service leave during that time to become mum’s carer and then took a career break in 2019 to enable me to focus on spending whatever time we had left with her. The doctors did not expect her to last beyond six months, but true to form she held on longer and passed away the day before her 76th birthday in September 2019.

During the last nearly 18 months I have had the privilege to watch mum’s life’s work play out before my eyes. Mum did not reach great heights from a career perspective, which is not surprising given what I mentioned above which impacted many women of mum’s generation, but what she achieved was so much greater than any career achievement; she built long lasting loving relationships. The women in mum’s life were there for her. I observed very different responses from men and women during this time which was interesting and apparently quite common according to the medical professionals I spoke to. But that is not what I want to talk about here. I want to share my observations of what I believe was my mother’s greatest achievement and her talent; relationships.

Mum invested heavily in her relationships. She maintained contact, she was always there, she always remembered every little thing and would make sure she asked for an update or called to check on the outcome of a test result. Every week over the last 18 months one or more of my mother’s friends would visit her. Wherever she was, whether in one of the many different wards of the hospital, at the palliative care hospital, at her home, at my home, at the wheelchair friendly unit I moved us into or at the aged care home at the end; they visited every week. Mum is a St Margaret’s old girl and has a very close group of school friends who call themselves the “St Mags Bags”. They have been friends for over sixty years. Other than mum’s cousins these ladies had known mum the longest in her life. Well before her marriage and children.

The Oxford dictionary states friendship is “a person with whom one has a bond of mutual affection, typically one exclusive of sexual or family relations”. The urban dictionary describes friendship as:

“Friendship is when you love someone with every ounce of your being and genuinely want them to be happy even if it means sacrificing something your self to make them happy. A true friend is someone you can talk to about your feelings, someone you can tell things you could never tell your family or even your partner. They are someone who you don’t have to talk to but someone you want to talk to; someone you will go out of your way to be with. Friendship is when you love someone so much you want to hold them and never let go, someone you want to rest your head on and cry, and you would let them cry on you too. Its someone you can talk to about things you disagree on and end up being closer for that disagreement. Its when you think about someone and how close you are to them and how much you love them and you smile and are happy all over. Friendship is when your love for someone exceeds your need for them.”

I have witnessed true friendship over the last 18 months. The friends my mother invested her life in were there for her time and again without hesitation. I know my mother never thought this was why she was investing her time in relationships…..so people would be there for her. She was always there for everyone else during her life. There were people who did not reciprocate over the last year and some she was disappointed about. But that was not these women; her school friends, her TAA friends (mum was an air hostess), her cousins and more. Some travelled from interstate, others travelled by public transport over long distances, others didn’t bat an eyelid at the costs of hospital carparks. They relived stories of their lives, they laughed with her, they cried with her and when she needed it they sat beside her and held her hand. When she was angry about being let down by key people they shared her anger with her. When she told them she wished she could do something for my birthday, they baked a cake and brought it to the nursing home for us all to share. When she found it too hard to go out anymore they brought home baking to share during their visits and stopped to pick up a nice coffee for her on their way.

I once said to one of mum’s school friends “you have all been so wonderful through all of this”. She cut me off before I could finish and said “There was never any question. I know if the shoe was on the other foot your mum would absolutely be there for me”. I have had numerous conversations with “mum’s women” over the last year. The common theme was how much mum invested time in genuine relationships with them all. She was a true friend. I have also had many people tell me how wonderful it was that I took time out of work to care for mum and then spend time with her. My response every single time was “mum deserves it”. As true as it was for all of “mum’s women” she invested as much and more into her relationship with me and also my daughter Ashleigh (7 years old). Ashleigh and I are certainly part of “mum’s women”. There was no hesitation on my part to taking time out of the workforce which ended in me being made redundant at the end of August 2019. If I had to choose again I would make the same choice. Over the last 18 months mum, Ashleigh and I have had the opportunity to spend quality time together we would otherwise not have had. Mum and I have said everything we needed to say. Mum absolutely knew how much she was loved by me, her granddaughter and certainly all of her friends.

At the very end it took mum four days to pass away. I’d be lying if I said it wasn’t hard and extremley confronting (shout out to everyone in the medical profession – I am in awe of what you do). The strong bond of love does conquer all. Watching mum die was the hardest thing I have ever done and I think will ever do in my life but it was also the greatest gift of love I could give my mother. Constantly touching her and talking to her so she knew she wasn’t alone and holding her as she took her last breath was an honour. Would I do it for just anyone……no way! It was awful and it has taken me weeks to be able to sleep without having what is probably a form of PTSD. I have no regrets at all when it comes to mum because everything I did was for her and because she deserved it – she invested in our relationship consistently over my lifetime.

I think I have learned a lot from my mother as I have been surrounded by many amazing friends who have supported my daughter and I over this period of time and beyond. Mum’s gift of friendships also keeps giving with the support I received during and after mum’s death from her friends. Mum’s investment in friendships is still paying forward with “mum’s women” wanting to continue to be a part of Ashleigh and my life. I know my mother will be looking down on that with a huge smile and it will be giving her great comfort to know that whilst she can’t be here with us the people she loved are continuing on her behalf….what a gift!

The life lesson I have taken from my mother’s end of life journey is to spend every day, every interaction, every moment investing in relationships with the people you care about. When your end of life comes it won’t be your career achievements or the amount of money you have that will be there; nor is that what you really need. What you need you cannot buy. When you are scared and facing death you want and need to be held by the people who love you. If you invest in those relationships……they WILL be there.

In honour of Susan Flora May Layt (nee Drummond)

19/9/1943 to 18/9/2019

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