The uncharted territory of grief and sight loss

For those entering into it, grief is a journey into uncharted territory– a spectrum of emotions which can be overwhelming, confusing and at times extremely unpredictable.

We tend to think about grief as the feelings you have after the death of a loved one. Yet grief can occur when we lose something else significant to us.

Losing sight is a profound life-changing event. One that can evoke a complex and deeply emotional grieving process. The experience of vision loss is not only about adapting to a new way of life but can also be about mourning the loss of your previous capabilities and the visual connection to the world.

12 months ago, Dad lost his sight completely. Since then, grief has overwhelmed him.

2019 – where it all began

Let’s rewind 4 years.

Dad noticed a lump under his eye and off he went to the GP. The GP sent him off to the opticians. What followed was the to and fro of Doctor’s and Optician’s visits.

It took a year and a new Doctor, for Dad to be sent urgently to the hospital. A week later he was booked in for an operation to remove his right eye – had it been left a week later; they believe it would have spread to his brain. The speed by which we’d moved from diagnosis to operation was a blessing in disguise – it meant we didn’t really have time to process what was about to happen or consider other options. The operation was a success and my eldest loved having a new ‘Pirate’ Grandad.

What followed was months of intense chemo and radiotherapy. Again, we were lucky, and the cancer didn’t return. Dad settled into his new life as the Pirate Grandad, even carrying a stick-on googly eye in his pocket ready to pull a joke whenever he could.

However, it was short-lived, and things quickly changed in November 2022. Dad woke to blurry vision. The consultants put it down to dry eyes. 2 weeks later it was progressively getting worse. Then on his 69th birthday he awoke to complete darkness, a later confirmed side of effect of the months of intense chemo and radiotherapy.

The grieving cycle

Christmas helped, everyone kept busy and we we were all together. Yet post-Christmas it hit him like a tonne of bricks.

I find Elisabeth Kubler-Ross’ five-stage approach to grief relatable to Dad, especially if we view it as a non-linear cycle where you can experience different aspects of grief at different times and in a different order. In fact, you might not even experience all the stages.

We’ve watched, and we still do as Dad navigates the stages. At times he departs a stage, moving to the next quickly only to then revist an earlier one. Other times he feels stuck, unable to move forward to the next and sometimes he skips one altogether. For Dad his grief is a constant revolving journey with no end in sight (at least for now).

Denial:

For many the first stage – a natural defence mechanism.

Dad tried to make light of it, as he had done when he lost his eye but in reality, the enormity of the situation hadn’t sunk in.

Anger:

When life seems cruel and unfair, we can instinctively turn to anger and blame.

Dad’s anger became directed towards the circumstances and at others as he attempted to grapple with the impact on his life. He was angry at everyone, especially those who tried to help but ‘couldn’t understand what he was going through’.

One of the aspects which causes him the most anger is the paperwork – there is so much paperwork which has to be completed to allow you to access support, and prove you need the support.

Bargaining:

This is the idea that it’s hard to accept that there’s nothing we can do to change the outcome. As such, we try and gain control through a series of “what if….” Questions or statements.

For Dad it was “what if I’d pushed my GP to send me to hospital sooner…”

Depression:

Perhaps the stage most thought of with grief. The sadness and intense pain of losing something or someone.

For Dad it started with immense sadness. His first tear trickled down his face when he was with the consultant…“I’ll never get to watch my grandchildren grow up…what if I can’t remember what they look like”. Our boys are his world. Even in his darkest moments, they are the light that shines through for him.

His pain comes and goes. He gets frustrated and upset when he can’t do simple tasks himself – the ones we’d take for granted. He has good and bad days – mainly bad. He grieves for the person he once was and the independence that he’s lost. He feels he is a burden to his family and thinks he’d be better off elsewhere.

Acceptance:

Acceptance is tough. But gradually most will find that it’s possible to come to terms with what has happened, and even accept it.

Dad’s passion was gardening, he was always outside. Although we’ve found workarounds for the garden it’s still not the same for him. We’ve tried to keep some routines – mum still provides the childcare for our boys – dad likes this. He has a great relationship with them, and they both do their best to help him and involve him during the day.

Part of the process of acceptance is learning to live with a new way of life – this is what Dad struggles with and I think he will for a long time. For now, he’s trapped in a cycle of anger and depression.

Ambiguous Grief

Dr. Pauline Boss coined the term Ambiguous grief – grieving for someone who is still alive but is no longer emotionally or psychologically there. It feels like this with Dad, like we have lost the person we love and yet there is no closure.

I’ve watched as mum grieves – it’s heartbreaking to watch someone you care for become a shell of themselves. Mum has lost some of her independence too, she’s nervous about going out for long periods in case something happens to Dad. She also deals with the brunt of the anger and gets angry herself over the situation. It’s a new journey for them both.

For me, it’s an internal battle of emotions:

Guilt for being upset – Dad’s alive, and we’re still able to have a relationship with him.

Sad because he’s so far from the person he was 12 months ago.

Anger over the thought of what he’s had thrown at him over the last couple of years.

Heartbreak of knowing how sad and scared he is.

Fearful over his cycle of anger and depression.

Happy that he’s still here.

Support

It’s important to remember that there is no timetable for how long grief will last and everyone will deal with grief differently – the grief journey might not look like the above.

It can come in waves; you have ups and downs – that’s perfectly natural.

What’s needed is support at each stage and the understanding that grief has no boundaries.

Sight loss:

According to the RNIB there are over 2 million people in the UK living with sight loss. Every day 250 people start to lose their sight. Having to re-learn how to do everyday things is the reality of losing your sight. This could include re-learning how to make a cup of tea, using the microwave, moving safely around your house, answering the door…the list goes on.

The RNIB provides a fantastic network of support and resources > RNIB

If you’re local to Cambridge, Camsight are fantastic and provided Dad with a lot of the initial support he needed.

NHS has a list of National charities which specialise in vision loss- Blindness and vision loss – NHS (www.nhs.uk)