Amanda’s Story

Amanda’s two grief stories sit forty years apart from each other and focus on the loss of her parents, Terry and Ann.  Two people who were so very different and yet who loved each other deeply. Amanda lost her dad to multiple sclerosis in 1981, when she was just seventeen; her mum died in 2021, during the COVID-19 pandemic and after several years of living with dementia. After her dad’s death, the loss was packed away and rarely talked about. When her mum died, it was at a time when funeral restrictions were still in place, making grieving her loss especially difficult.

Here Amanda explores the differences between her two experiences of losing a parent, and shares her thoughts on what support can help those who are grieving.

Dad

My dad’s death in December 1981, when I was just seventeen, was my first experience of loss. At fifty-one he was still in his prime. Just ten years since his retirement from the RAF and at the height of his career as a technical author, with his four children still far from grown up. I was still living at home, with two of my siblings. My older brother had moved out just a year or so beforehand, and life was difficult for us all as his multiple sclerosis progressed. Today it is unlikely he would have died from this. But his diagnosis in the late 1970s meant that he didn’t have access to the medication and treatments that exist today, and his deterioration was fairly fast.

When I was told he had MS I was only around fourteen, and knew little of what this would mean. Over the few years that lay ahead his mobility decreased and for the final year of his life he was unable to work, with things deteriorating fairly rapidly.

My dad was my world. He would tell us stories of when we were little, and that magical twinkle in his eyes when he laughed was something I have never seen in anyone since.  He always knew the answer to every question I ever asked him, he was kind and thoughtful, and I so wish I had known him as an adult.

In November 1981, just a week or so before my seventeenth birthday, the doctor made it clear to us all that it was very unlikely Dad would make it to Christmas.  I remember leaving the house to go to my job at nearby Little Chef, and cycling along with tears streaming down my face. The thought of my dad not being around was unbearable. Should I buy him a Christmas present? If so what if he wasn’t here to open it? Should I give it to him early, but how would I tell him why I was doing that? I bought him two books. One about Spike Milligan. One about Val Doonican. He never got to read them. I kept them for years, then donated them to a charity shop.  Seeing them brought back painful memories of the dilemma that surrounded them.

Dad died on December 21st. Winter’s shortest day. He was at home and I remember going in to talk to him as he lay cold in our home.  They collected him the next day, so he was there all night. I found that very unsettling as a young girl. Death was something I had no experience of at that time.

Our family Christmas that year was strange. It snowed too. Snow that would usually have brought joy at the fun it offered. Instead it just added to how cold we all felt.

His funeral took place just a week after his death.  I remember my mum, grief-stricken, being comforted by my older brother. I don’t remember anyone comforting me. Or cuddling my younger brother, just twelve at the time. Dad was an atheist, and the service was by a non religious minister at the Cambridge Crematorium. His last wish has always made me smile. He wished to be cremated and for his ashes to be scattered on a windy day so that he could get up people’s noses in death as in life… his humour was always so off the wall.

It is fair to say the loss of my dad has impacted my life ever since.

In those days, the suggestion of getting counselling just didn’t exist. My mum struggled immensely. She didn’t know how to cope without him. She didn’t have a clue how to help us, her children. She tried to take her own life. Luckily she didn’t succeed, but the shock of that just six months after his death affected us all beyond belief. Our whole family broke apart after his death.

Mum married again. We all left home, took our various paths. Many not the best choices at the time, but I know for me personally I was lost after his death. I headed for any light and shelter that came along. I shut my feelings down at the cost of many relationships.

Somehow, months turned to years, but still the effect of his loss on me was rarely asked about or talked of within the family, and I have realised over the decades since that talking about death is the one thing that can get you through the pain. It is so important. Had we all talked more I know it would have helped us all cope so much better.

Mum

It would be another forty years until I would, again, face the loss of a parent. And, although older now and with a daughter of my own, her loss would affect me so much more deeply than I could ever have anticipated.

My mum was a very fragile person. Her whole life had been one filled with anxiety and poor mental health and she never really got over losing my dad, even though she married again very soon after.  I know, for her, he was a crutch to lean on as life alone was too daunting at that time. Yet, after her second husband’s death, Mum did live happily alone for many years, although a decade of them were just down the road from me and my family. Those days for her were very happy times.

The signs of dementia crept up on us slowly. Like so many others before us, we put her forgetfulness down to her age and, until the year she forgot my birthday, I was very much in denial that she had a real illness that was causing these changes in behaviour.

Keeping her at home and out of the life in a care home that she feared so deeply was my mission, and one at which I succeeded until the authorities took over during a hospital stay. They enforced on me what I already knew but didn’t dare to admit – living at home alone was far too dangerous and unkind for her any longer.  For two years I had been both her daughter and her carer too. A relationship fraught with challenges, but worth every sacrifice.

The month was March. The year 2020. I cried more tears than those I had shed in my entire life during the weeks that led up to Mum going into care. She entered the home on 20th March 2020. Lockdown came on Monday 23rd. Her life and mine were thrown into an existence I wouldn’t wish on my worst enemy. From seeing me every day, she went to barely seeing me at all.  A chat through her window was the most we could hope for. Thank goodness I chose a ground floor room for her.

Having survived 2020’s COVID threats and the loneliness it created, the variant that cancelled everyone’s Christmas that year ended up taking my mum’s life. In January 2021, just weeks before the vaccination that would help protect us all, she died. By then she was like a baby bird, so small and so frail.  Ten months of near isolation had turned her hair white and aged her immeasurably. The shock of seeing her so thin, ravaged with COVID, will remain with me always.

Unlike many whose loved ones died alone, I was invited in by the kindest nurse (who I will never forget), to spend her final hours by her side - but only after first being layered in plastic and masked.  Twelve hours I sat there by her side. Scared to leave in case that was the moment she died. I talked to her, I stroked her hand and told her everything I had wanted to say during those ten months she had been locked away in care. I dreaded her dying, feeling she had been abandoned. She had to know we all loved her.

Mum took her final breaths around 4 a.m. My younger brother was on the end of the phone as she passed. We were there together for her.

The hours that followed were surreal. I sat with her in silence for some time. I had seen my dad die so many years before and now here I was having seen mum die too. I guess many never witness death. I don’t know whether I would choose to. It leaves so many sad memories imprinted in your mind but, in Mum’s case, had I not been there for her, the guilt I felt at not being able to see her during the ten months leading up to her death would probably have destroyed me.  A Catch 22. But I find peace in having been by her side. Nobody came in while I sat with her except two carers who so lovingly changed her sheets at midnight. The love they showed her as she lay there dying made me sadder than I can describe.

Before I left I was asked to choose what she would wear in her coffin. The pandemic meant Mum would be sealed very quickly into a coffin. The fear of infection was a very real one for funeral directors. With her into the coffin, I sent pink bunny, a gift I gave to her in hospital and a comfort for her throughout her final months. I know she would have wanted bunny with her.

Mum’s funeral in February 2021 was thirty minutes long. We were allowed twenty people. Nobody was able to hug. Nobody could get together afterwards to share memories. The flowers from her coffin sat on my table in the hall until they began to die. I wished more than anything she could have seen them. She loved flowers so much. She would have thought they were so pretty.

Over two years later, the horror of Mum’s final months is still with me. I will never forget the pain on her face through her window on the visits I made. I will never forget the kindness of those who helped me find ways of being there for her when it was needed. Without them, my burden would be so much heavier. I will forever wish her time in care could have been what it was meant to be – time to be looked after and to enjoy those final months, free of worry and with people to take care of her. I hate to think of the tears she cried wondering where I was.

I still find tears rolling down my face without warning. Thoughts of Mum come into my head, and I see her sat there next to me in the passenger seat on one of the many trips we took together, and which she loved so much.

Coping with the death of a parent changes you. When they are both gone, you realise how precious they were. Your status changes. You are now the older one. Nobody knows you like your mum does. My daughter no longer has grandparents on my side. That makes me incredibly sad as my mum adored her time with her.

Talking about death is something we all must do more. I talk about it with my daughter. I can’t bear the thought of the pain she might feel without me in her life. And if I was offered to remove the pain of grief from her life, would I take it?  I would be tempted, I have to admit, but with life and with loving others comes loss. It’s what makes us human. Grief moulded me into who I am. Without it I have no doubt I would be a very different person.