National Day of Reflection, carers share their thoughts on grieving

23rd March is a National Day of Reflection, led by Marie Curie, two years on from the first UK lockdown. A day where we can collectively and individually take the time to reflect on the past couple of years, particularly remembering those who have died.

How we can get involved:

  • Join a minute of silence at 12 noon

  • Create a colourful poster to put in a window (templates here)

  • Shine a light at 8pm

  • Or simply take a moment to reflect on the past year in our own way.

Reflections from the Mobilise Community of Carers

Many carers in the Mobilise community have lost someone they love. Almost everyone will have been touched by the death of someone. Grieving is never an easy journey but the coronavirus pandemic has meant that many traditional ways of grieving together with others were not available to us.

Carers in the community have shared their thoughts about grieving the past couple of years. They each have an individual story to tell, perhaps they resonate with our own experiences, perhaps we will learn from them and together with our own individual stories (that might be quite different) we can remember those we have lost.

Caring for Mum whilst grieving for Dad

The week after my Dad died unexpectedly in 2018, my mother was diagnosed with Alzheimers.

A few months before lockdown, I gave up work to try and spend some time with her whilst it was still possible. In the first lockdown, I moved in to protect her from isolation, falling, disorientation. Carers lose something of their own lives all the time. With Alzheimers, I've lost my sibling relationships as well as my mother bit by bit as well as - temporarily - my own home, routines, choices, time.

Being alongside a gradual and unpredictable ending whilst grieving for another parent is like being forged in a fire I didn't know existed. I wish for more balance in what is held up as normal in our culture, on TV and what we focus on.

We're afraid of sadness and vulnerability and I'm deeply glad of National Reflection Day. We should do it annually. To grieve our individual and collective losses, acknowledge our blessings, celebrate our growth as human beings, and reflect on what really matters.

I lost the love of my life

What I found helpful when experiencing the death of a loved one: counselling, talking.

My counselling hasn't gone as well as I expected due to her availability, a busy year for the resource, however knowing she was there gave me peace. Allowing myself to be upset and cry was also was useful. Teaching myself to stop saying sorry every time I cried. I lost the love of my life, married just under 40 years.

What can friends and family do to support someone? Be there and keep in touch. I had my friends contact me in the very early days but they then disappeared after the funeral, that is the actual time you need support.

I was on a mission just after my husband died as I had to ensure tasks needed to be done. Arrange a funeral, write words to be readout. Deal with the official paperwork, banks, tell us once service. After the funeral I had no contact with my friends, my neighbours were there.

Although one neighbour said, "you still crying?" I could have hit her.

It's not like in the movies where people bring you food or at least it wasn't for me, that would have been so welcome

How has being a carer had an impact on all of this?

There was a huge impact on caring. I had looked after my husband's needs for a very long time. After a massive stroke in 2002 and then the journey of myeloma cancer. When he was gone I thought "what now?"

He left a big hole in my daily routine. No looking after his every need, no post from the hospital, no appointment, nothing on the calendar, no arranging my day. This was a big shock to me.

What can we do to remember those we have lost? I will never forget my hubby. I have started writing a journal about our life. I wanted my family to know about how we met, the things we have gone through. Happy times and sad times.

I would also say my husband didn't die of Covid like so many who have lost their lives the last couple of years. My husband died of cancer, myeloma. The thing that 2020 did rob us of was our freedom, I'm sure we would have created memories in 2020, rather than being stuck in the house 24/7.

Caring until the end

Being with my Dad from the last day he could speak through to the moment he took his final breath was such a privilege.

Care staff were so gentle and kind to him and so welcoming of my sister and I as we sat. As we prepare for his funeral, there has been great comfort in receiving personal cards, letters and flowers and reading lovely comments on Facebook. I feel very grateful.

Saying goodbye to Mum

What I found helpful when experiencing the death of a loved one: I think preparing for it.

Saying what you need say to your loved one. Giving them the time to say what they have to say. I experienced the joy of both my mum and I being able to say we loved each other. It’s given me peace and strength.

I spoke about the potential of my mother’s death to my local priest months before she died. I found out what I needed to do practically as I’m now in the process of repatriating her back to Ireland and I know what I have to do.

Recognise that death is often not sudden. For some there are signs of the journey beginning months before it happens. Prepare emotionally and practically both for you and for your loved one.

When making arrangements, what helped me is practical support. Also stories about your loved one. Informing my friends and relatives the stories about my mum gave me comfort.

Impact of being a carer: I’m now in a kind of limbo or trance. In shock. The last 3 months have been intense. And suddenly I have my own time, I’m in the middle of arranging everything. I’m more exhausted than grieving it feels. Once she has her final service, I know that’s when I will fall apart. I need to be strong now. Service in UK, service in Ireland and all the Covid issues and paperwork.

Remembering those we have lost: Talk about them to friends and family, say a prayer, light a candle. I’ve just written a eulogy for my mum’s service this week. It was cathartic. Write down stories about your loved one, how you feel, what other people said. I’ve had to pick music and find photos for the service. This all helped express my memories of my mother. Build a book of memories.

Grieving from a distance

My uncle had been living in Australia for many years and died in the autumn. We were able to watch a live stream of his funeral service and his sister (my aunt) gave a eulogy live from the UK. His dog even made an appearance!

A book of remembrance has been opened online and we've been able to share our thoughts and memories as well as read what others have said about him. Colleagues from all over the world paid tribute and we got to know a little more about his adventures in his adopted home.

There will hopefully be a time when we can come together as a family to remember him and celebrate his life. The plan is for a day out at a wildlife park (he was a big animal lover) and a picnic lunch.

Feeling the collective losses and grief

I am lucky so far to say we had no loss as a family to Covid. Of course though, over the years I have experienced death of loved ones.

I can only write for this as someone who is caring, as a natural empath and somebody who is very very sensitive to what happens to others, and feels “earth energy”, and pain for others who are strangers.

Feeling the losses and the collective grief has been a journey for me. I have developed practises to honour thinking about those who died. For example, lighting candles - a kind of ritual of thought for those who have passed, scrapbooking poems about death and life, being part of a mindfulness group where we discussed our feelings around this. I also developed an altar of special objects that bring comfort.

Every day I now do a mindfulness practice called “Kindness to Others” and part of this is sending kindness out.

These practises have all really developed in the light of the many many deaths and have really helped me channel feelings of grief. My heart goes out to those who have lost loved ones this last year, in whichever way.

Further resources and support we might find helpful

Support for when the person we care for dies

How to cope when our caring role comes to an end

Find out more about the Marie Curie National Day of Reflection and resources to help with grief.

As carer's feelings of grief don't just come with the death of a loved one. Saying goodbye to the person they were before illness, or the life that we had together or hoped for might also involve feelings of grief.

One carer recommended a book "The Cancer Whisperer" by Sophie Sabbage. It includes a chapter on grief, "This is an invitation to completely redefine your relationship with grief and embrace it as a profoundly healing force in your life."