On March 2nd 2016 at 2:30p.m the moment that ended the role I had most identified myself with for nearly 58 years happened. My younger sister, Marie, my only sibling died. It shouldn’t have been such a shock, she had advanced Alzheimer’s (a disease I now know way too much about) & for six months I had been in a state of anticipatory grief, a term I was then unaware of.
Nothing could have prepared me for how I have felt over the last 15 months since her death. But plenty could have been done to help me along my path.
We are told that grief occurs in stages, be it five or the newer thinking seven, & that it happens in waves. This is a lie. The stages interwine & overlap & the emotions I feel are more like a tsunami than the gentle waves of the sea. These “moments” come from nowhere. It feels as if my insides are being slowly ripped out whilst I silently scream. Then it passes & I wait for the next time. I live in fear of them.
I have been shaken by the turmoil Marie’s death has left me in. I have lost both my parents & in laws so I am not new to the death of a close loved one. But I have learnt that not only does every person differ in how grief affects them, but that each loss a person has affects them dramatically differently.
My sister was born with Down’s Syndrome. Our relationship became more like that of siblings crossed with parent/child. Or so I think, I have no comparison. Some people have said to me that I must feel a burden has been lifted from me. This hurts. She was a reponsibility, but never a burden. Innately I knew that my role was her carer & although I wasn’t always personally doing the caring for just short of 58 years I felt it my duty. That’s what I mean by the role I most identify myself with. I had had this role longer than any other role in my life.
What haunts me more than anything, more even than her actual death, is the thought she faced fear alone. Alzheimer’s is an evil illness. Marie had lived in a small residential home for many years where she was lovingly cared for. But in August 2015 she had to go into a nursing home as her care became too much for them. This was a giant upheaval for me, I can’t imagine what it was like for her!
Even though we were frequent visitors in those last few years & months of her life I wasn’t with her when she died. We had left her just an hour before to go & pick up our granddaughter. We got the phone call & turned the car round & went back, with a 3 year old in tow. My eldest daughter & myself went in to see Marie whilst grandad looked after the little one, my family once again, as always, working together. We sat with her for I can’t remember how long, & I was so grateful that just the day before my daughter had suggested that we called a priest. I am a very lapsed Catholic but right then the traditions of my old faith brought me some peace.
Marie’s ending of life was the start of a new chapter in mine. A journey of such great grief, pain & sorrow. Yet from the start of that journey not one agency I had dealings with offered or directed me to any form of help. I was told the practical steps to take but no one informed me that I could seek help for the grief I might encounter. Not the home, as great as they were with Marie, not the coroner’s office (which is mandatory with a care home death), not the undertakers, not the lay preacher I decided upon to do a service. This is just not good enough! It took a visit to my GP a couple of months later when I told him that I wish I’d died with Marie for someone to offer me some support. I was referred for grief counselling, but of course there was a wait.
During this wait I used my self enforced seclusion & little knowledge of technology to research grief. I spent hours reading research, articles, reports & guidelines. I joined forums & groups on social media. I had the ability to become proactive, God help those who haven’t! In August 2016 I started my six sessions of counselling. The counsellor & I had a great rapport, which is so important. I sometimes think these sessions saved my life. Yet the question remains, should getting help for bereavement be so difficult & so hit & miss dependent on where you live? I think not.
During my internet wanderings I came upon an organisation called the Good Grief Trust. It was one of those light bulb moments when you shout yes! At last, someone had not just had the idea of, but was actually going to do something about, finding the bereaved, acknowledging their pain & directing them by using the best in modern communication to the most suitable source of help. Packs for front line organisations, the media, an umbrella website…how I wish these had been available for me last year!
I am learning to live again now, accepting grief as part of this new chapter in my life. But a little help along the way would have would have saved me endless hours phoning places & trawling the internet searching for help, not to mention the lonely months of tears & sorrow.
Anne Edwards
Me & Marie 1958
Marie, me & Holly 2013
Dancing Queen!