Understanding the Anticipatory Grief Process

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When I began my grief process (one of them), I didn’t know it was happening for quite some months.

Even as I sit here gathering my thoughts to be able to best describe it, I learned more about how I experienced that process.

Understanding the grief process - a mom and her daughter walking along a empty gravel road between harvested wheat field
The definition of Anticipatory grief: “A feeling of grief occurring before an impending loss.”

What is grief?

The meaning of grief is: “Intense sorrow”

The definition of Anticipatory grief: “A feeling of grief occurring before an impending loss.”

The grief process I wanted to describe to you, was one that started not long after Matthew was born. It was a process that took many months.

Denial: Shock & numbness

For a long time, I realise I was in the denial phase. In complete shock, feeling numb about what all of this meant for Matthew’s life.

18 months to 2 years later, I had a psychologist ask me:

“When did you realise there was something seriously wrong?”

It took me a moment, and said, “He would have been at least 6 months old if not more.”

The surprised look on her face is something I reflect on now.

My son Matthew, was resuscitated at birth. Born with club feet. Had his first episode of not being to breath, only 6 hours later.

Admitted to special care for 5 days. Where they ordered genetic tests – just in case.

My response?

What a joke!

That doctor has no idea.

At 1 week old, Matthew began treatment for his club feet with his physiotherapist.

He continued to lose weight, even after the normal period that new babies often lose weight. The maternal health nurse continued to have us come in every week to weigh him.

As she became increasingly concerned, I brushed her off.

By the time the maternal health nurse referred me to the hospital lactation consultant, the consultant said to me, “He is too weak to feed properly. He doesn’t have the energy he needs to learn.”

I hired a lactation consultant – this was “no more difficult than it was teaching Shane to feed.”

It was Matthew’s physio who called in her friends, the dietitian and the speech therapist, while we attended our physio appointment, who raised the first red flag.

They took action immediately. Knowing how serious his condition could become. While I was just suspicious of their actions and oblivious to what was going on.

These things ALL occurred before Matthew got admitted to the Royal Children’s Hospital the first time, where he nearly died.

Things only got more complicated from there.

At the hospital, the doctors would ask me confronting questions which I brushed off exactly the way I had the first doctor.

“Do you think Matthew can see you?”

“What are you talking about? Sure, he looks at the computer screens. He’s only 2 months old who knows what a baby can see at that age anyway.”

“Do you think Matthew can hear you?”

“Yep, look he reacts when the nurses come in.”

Never asking why.

Depression: Despair & Disorganisation

I spent the next 6 months completely overwhelmed, unable and unwilling to retain anything except the basics to keep Matthew alive.

This is a time where my relationships outside of our immediate family unit suffered.

I felt very lonely. I didn’t know why people didn’t reach out, or if they did why it was often more uncomfortable than helpful.

When it came down to it, I was fully responsible for keeping Matthew alive on a day to day basis. A very isolating feeling.

I became disappointed that no one could help me, help us.

Though one thing is certain, you don’t always experience these things in order or one at a time.

During all of these long months, I learned to express breast milk like a pro – I pretty much was, I even fed a second baby similar in age to Matthew with the milk I saved.

I used every opportunity to fight for Matthew to be able to learn to breastfeed.

Perhaps this was part of the denial, the not being able to see what was happening right in front of me, but it also gave me purpose.

Made me feel like there was something I could control, if Matthew couldn’t get it himself I would put it down his tube. To me, that was part of the acceptance of what is.

Anger: Blame & Frustration

As time went on, part of the journey to accepting how serious this was, was being angry at anyone who told me that it was going to be okay.

I couldn’t even count how many nurses who told me:

“It’ll be okay, he’ll grow out of it.”

How dare they comment on something they have no experience with?! This applied to family and friends especially. Even Luke when he tried to be the reassuring voice.

I began to be angry at doctors and other specialists, ‘the experts that know everything’, but children like Matthew prove that we know next to nothing about the human body.

I was furious that when Matthew began to recover from whatever illness had him admitted to hospital, immediately the doctors would say, “Are you ready to take him home?”

His recovery was not nearly complete, but he was ‘out of danger’ so I was expected to learn everything required to be his nurse until he was ‘back to normal’.

I was angry that I had to take him home when we weren’t even sure that he had turned a corner for the better. They were just hoping that he had.

I was frustrated that people would reach out to help and nothing would come of it.

The development that happened – during the grief process of depression & anger – was having to prove to the government that Matthew’s condition warranted support.

They made me jump through hoop after hoop, while I was desperately hurting. They made me prove I wasn’t just trying to cheat the system while I felt alone.

Bargaining: Yearning & searching

I began to think that if I could just get some support, an extra set of hands, things would be okay. If someone helped me keep an eye on him then we would be okay.

I could do my work, we could split the therapy, medications etc when Luke wasn’t home, and things would be okay.

I could keep feeding Matthew breast milk it would support his immune system. If he would just grow a bit he wouldn’t be so sick all the time and then the life and death moments would pass.

Maybe a specialist from Sydney or somewhere their research in neuro-plasticity was more advanced would help. I would do whatever it took to connect him to the best there was.

When I did my part, everything would be okay, right?

Acceptance: Reorganisation & Recovery

One day, I’d had enough of the shock, disbelief, sadness, guilt, anger.

Yet another person was offering their sympathies that Matthew was sick in hospital…again.

Living in survival mode, panicking every time something happens. 

Being shocked every time he gets sick. Every time I needed to call an ambulance.

It’s exhausting.

I couldn’t keep doing it. It was time to decide on post-traumatic growth.

A bit at a time, I began to take my role as an ‘expert’ in Matthew’s condition very seriously.

I stopped expecting health professionals to know anything I didn’t know about him.

We got rid of professionals on our ‘team’ that were not a good fit for us.

A doctor who didn’t remember details or check her notes. A community support co-coordinator who thought it was okay to tell me what I should do career-wise now that we had Matthew.

Down the track, I began to reach out to the families around me. The ones across the hall or who I met in the ward pantry.

I started attending events for organisations who supported families with children like mine.

We got to know Matthew as Matthew. 

We worked to his strengths.

Learned his favourite music, his favourite colour.

Celebrated his first laugh.

Hung out, went swimming, walking in the sunshine – guarding him against the wind of course – he hated that.

Planning for kinder and then eventually school.

Did we look too far in advance? No.

We celebrated each day and each win.

Did the midnight tears about what “could happen” completely stop? 

No, not completely.

Where there days spent hanging around waiting for things to go wrong?

Yes, there were.

The grief process isn’t linear.

Not everyone experiences all the stages in the grief process. Especially if we’re talking about anticipatory grief.

Sometimes it is healthy healing or unhealthy habits that affect this process.

Experts encourage if people don’t eventually find themselves going through the stages, that they reach out for professional help.

One quote I read somewhere said, occasionally some people experience an abbreviated grief process, where they move swiftly through the process.

Again this could be for healthy or unhealthy reasons.

Sometimes, someone experiences an abbreviated grief process because they already experienced an anticipatory grief process.

Having gone through some of the issues they would face ahead of time, some find it a smoother process to move forward.

Are you in the midst of a grief process?

Commonly we associate grief with the actual death of someone.

As anticipatory grief, this isn’t always the case.

Many other things trigger a loss that causes grief. A loss of a job, home, marriage.

So when thinking about whether we are affected by grief we can look to some symptoms of grief.

Emotional symptoms of the grief process might be:

Shock, disbelief, sadness, guilt, anger and/or fear.

Physical symptoms can be things like:

Fatigue, nausea, lowered immunity, weight gain, or weight loss, body aches and pains, insomnia.

During the anticipatory grief process, I lost a lot of weight. Later when Matthew was dying I put on weight.

After he died, I found I had a variable body temperature. Getting very hot and sweaty at times.

One of the palliative care nurses mentioned that grief can raise your blood pressure and your body temperature.

It’s an odd experience for sure.

Recommended steps to deal with the grief process

To be able to deal with grief healthily, you must first identify where you are at and what you are feeling.

Seek Support

Whether it’s just talking it out with a friend or loved one from time to time or it’s something more.

Do not isolate yourself, it sometimes feels like that is the best course of action. However, it can lead to stuffing and avoiding emotions altogether.

Some specialists deal with grief, post-traumatic stress.
They are well experienced and trained to support people in the grief process. Especially if they experience more complex grief.

There are grief peer support groups. The Royal Children’s Hospital holds one. Very Special Kids has many resources, even in the anticipatory grief process.

Know that when people offer support, they can be awkward. Not knowing what exactly to say and do. If you’re prepared for this when you step out and ask for support, the process will be easier.

Find comfort in your faith, whatever that means for you. For me, it was journaling and prayer, Bible reading, to quiet my mind. To sit with my emotions and own them.

For some people that is meditation.

For everyone, it means taking care of yourself.

Be aware of the drain on your emotion and energy stores – remember fatigue and lowered immunity are the physical symptoms.

So eat well, exercise, get as much good quality sleep as you can.

I couldn’t hit all of those boxes enough of the time, to take care of me, even before Matthew passed.

Falling asleep at the wheel with the kids in the car or not being able to sleep when I was in bed.

So I take a whole food supplement, part of taking care of myself. Something I learned during my ‘acceptance’ stage, definitely a life-saving step.

It has a 30-day money-back guarantee so I encourage anyone to try it. There is nothing to lose when you’re already grieving.

Do things you love

Hobbies and activities that bring you joy, can offer momentary enjoyment or even a break from the grief process.

As time passes you will enjoy more the things you used to love.

Be aware of things that trigger grief

Do consider things that might trigger the pain of your grief process. It’s not to avoid those things, but to be aware.

You can plan to commemorate significant moments or to just be with the right people when the moment comes.

Acknowledge the pain when it comes.

No one can tell you have to feel or experience this grief process this is your journey. But don’t do it alone.

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