Everyone’s experience of grief is unique and personal

10 MINUTE READ

From Luke’s Journal 2021 | Dying & Palliative Care | Vol.26 No.2

We each have different roles, personalities and relationships with the one who is passing away. My experience of the death of my mother is unique – not even my twin sister shares the same emotions or responses. But it is made more unique due to the fact that she died during COVID lockdown. 

So what does grief and loss look like during such a difficult time? For myself it was surprisingly positive – if that’s the right word. God was very real during the whole experience reflecting his light in the dark months of suffering.

My story begins in March of 2020 just after NSW went into full lockdown. That was when my family in England first became aware there was a health issue with my Mum. It started with a sudden change in behaviour, short term memory loss and repetitive questions about the dog. (Tessa had died 15 years before). It was not looking good. Medical tests revealed brain cancer and her diagnosis was terminal. 

So, picture this – my terminally ill mother was in the UK and needed around the clock care. Her wish was to stay at home until she died. The alternative was COVID affected palliative care in an NHS hospice, which would mean only one visit of one hour a day by the same masked and gowned person each day. I live in Newcastle, NSW with my husband and family. We had both trained as physiotherapists, and I now work in aged care/palliative care as a pastoral carer.

Who would not want to travel over to care for her? 

I have to say, the NSW government didn’t make it easy to get permission to fly – but it was in the middle of a pandemic and the fewer people travelling meant fewer returning travellers with the virus. So I understood. I persisted with multiple applications for 3 weeks and in the end, both myself and my husband were granted permission to travel. We flew out at the end of May, not knowing how much longer she had left. But we were very grateful we were allowed to go. 

“We flew out at the end of May, not knowing how much longer she had left. But we were very grateful we were allowed to go.”

Deserted airports, immigration officers and police made the departure from Australia feel like an alternative reality. Having to wear face masks for 23 hours on the plane added to the strange experience, which was compounded by air hostesses in full PPE. Meal times were tricky, as you can imagine!

But arrival in Heathrow Airport felt like we had come from a continent that was completely over-reacting. We were waved through without any more issues than usual at immigration. We were told to spend 14 days in home quarantine on arrival but nobody checked up on us in all that time. Even my family was not concerned about our possible contamination post international travel. They didn’t wear face masks or request that we did. We felt like we had arrived from another planet!

My mother was pleased to see us both and was able to express her gratitude that we had arrived. She was aware that the virus was affecting the world and that life was no longer the same. However, she quickly forgot that we had just had that conversation and was surprised and delighted each time I told her I had come to stay. This may seem like a simple statement but to us both it was little short of a miracle. You see, mum was an alcoholic. She had struggled with alcohol for as many years as I can remember, although I didn’t realise the cause as a child. But I grew up walking on egg-shells, dealing with unexpected outbursts and withdrawal, watching my parents marriage slowly collapse. She was emotionally remote as a mother, which I have struggled with for years. 

So to experience her greeting to us both was an unexpected blessing. God in His mercy seemingly allowed brain cancer to bring my Mum to a place where she seemed to be able to relate warmly with us after all those years. 

Practically speaking, my father was at the end of his physical and emotional capacity after navigating the complexities of palliative care at home. The local hospice was great at giving advice and support by phone but wasn’t able to visit, which wasn’t ideal. The homecare agencies were able to provide daily care but could only help at set times in the day. We provided all the other care, day and night. At first, it wasn’t too difficult as Mum was able to walk around and explain what she wanted. But she deteriorated rapidly during the next 2 weeks, and before long we were dealing with total care. We took turns sleeping near her bed as in her confusion she would try to get out of bed at random times through the night. It was exhausting. My sister came down from Manchester to help us out which was another blessing.

“All the time we were aware that every person who entered the house could have the virus.”

And all the time we were aware that every person who entered the house could have the virus. Every shopping trip we felt the burden of bringing the virus back into the house to both Mum and Dad. It added a depth of stress that we didn’t need at the time, like a spectre that loomed at the edges of our consciousness. 

It was during this time that I decided to write my own personal psalm, based on Psalm 22, to share my fears with God in a personal way. I was conscious that my hands were the means of transmission and yet were also the way I was reaching out to care for my mum. How could I show God’s embodied love in a time of intense suffering and fear?

Covid Psalm

My God, my God, why have you forsaken me?
Why has my world changed beyond recognition? How long must I suffer?
Why, Lord, are so many in fear of their lives, while others mourn for a loved one taken so suddenly?
I’ve lost my ability to sleep soundly.
My dreams are shaped by fear, by unknown assailants.
I toss and turn all night.
My days are driven by uncertainty, By a search to find a sense of normal again.
I long for comfort, for routine, for the chance to enjoy the company of family, friends, and hugs.
How can I trust in you, Lord, In your loving care,
when the Covid virus appears so random, so uncaring, not respecting age or status.
How can I trust you have my life in your hands – when hands are a means of giving this disease?
And yet, I know that your Son died to conquer death itself.
He suffered as I suffer.
He was isolated from all friends and family as he chose to die on a cross.
He knew the certainty of death, and chose that path willingly, on my behalf.
His hands were pierced – no longer able to reach out to grasp others’ hands.
But his sacrifice was the ultimate act of love.
I know my short time of isolation and denial is nothing compared with your suffering, Lord.
And I know you reach out your hands, pierced for me, to grasp as I stumble through this strange time.
Pick me up, dear Father, lead the way and assure me that you have purpose beyond my understanding, as I trust in you.

My cry to God was answered in small but profound ways. The situation we found ourselves in allowed us to care for Mum in a really personal way. We were aware of her every need and were able to respond in a way that respected her personality and values. I was able to play some of her favourite hymns for her which we sang along together. For the first time in my life I was able to make her a cup of coffee which she reached out and accepted with a smile. My hands were a means of offering love and forgiveness. Her hands reached out and accepted in gratitude. She was grateful for our help and her acceptance helped heal past resentments. 

As I reflect, I can see that it is the small, shared experiences that made a difference, helping build bridges in our broken relationship. Without the need to care for her at home, we wouldn’t have had the opportunity to share these times with her. The medical help we received was a helpful means to allow this to happen but didn’t dominate the experience. It was the holistic palliative care experience I would wish for everyone in their last days. 

When my Mum finally died, it was after a day of agitation, pain and confusion that was extremely distressing for us all. The palliative care support we received from the on-call nurses was amazing. They quickly provided much-needed pain relief so we were able to navigate the final hours with some sense of coping.

During this time Mum told me she’d had enough and wanted to go. In her own expression of faith she told me where she was going – the “Pearly Gates” beckoned her. Then at the end of this long day she slipped away quietly without anyone with her, which was just like her. Always independent and not wanting a fuss made of her. So we mourned for our loss and her gain.

The funeral was delayed as you would expect due to the high demand for their services. But we were finally able to have a service with all immediate family members present. A chance to gather and mourn after months of stress and uncertainty. It was a moment when together we felt relief, a finalising of the crisis and a time to share memories. 

Our flight back to Australia was booked for shortly after the funeral, but as you may have anticipated already, getting back to Australia was not an easy process. We were distressed to be bumped off the first flight at the end of June but didn’t anticipate being bumped a further 3 times. We finally secured a flight in September after applying to the NSW government for medical exemption, to return for a family member back in Australia. Otherwise, we could possibly still be there, a year on!

The extra time with our family, though unexpected, was a time to process together. We stayed with my Dad in the first months of adjusting and we grieved together. Later on we took advantage of the beautiful English summer to visit other family and friends in the Lake District and Peak District. Another chance to slow down, to process Mum’s rapid death and make sense of the emotional upheaval that was part of 2020. 

Reflecting on the months that have just passed make me realise I can’t hold onto my disappointments and regrets. I have been given a chance to show grace and forgiveness towards my Mum, as Jesus had already shown for me. I feel God’s mercy in allowing us some final precious weeks in a better place with her than we had ever experienced. COVID may have disrupted our lives but it gave me the space and the opportunity to heal.

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