Understanding Anticipatory Grief: Preparing for Loss Before It Happens

What is anticipatory grief?

Grief is often thought of as something that happens after a loss, but for many, the grieving process begins long before the actual loss occurs. Anticipatory grief refers to the feelings of grief and sorrow that arise in anticipation of an impending loss. This type of grief is common among individuals who are caring for a loved one with a terminal illness or a degenerative condition. It involves mourning the loss of the person’s future, the anticipated changes in the relationship, and the inevitable death. 

The sad news of Rob Burrow, the former rugby league star who worked tirelessly to raise awareness around motor neurone disease after being diagnosed with the illness, recently died at the age of 41. The former scrum-half was diagnosed with motor neurone disease in 2019. Life expectancy after diagnosis is one – five years, with 10 per cent of people with MND living 10  years or more. The needs of people with MND are complex and vary from person to person. Living in the knowledge that you are going to die in a short but unknown time frame and that your health will deteriorate is beyond comprehension and impossible to come to terms with. It has a huge impact on family members and friends and many people start to grieve when they find out the news of a loved one is diagnosed with an untreatable illness. someone with a terminal illness may live for days, weeks, months or years. It often depends on their diagnosis and any treatment they are having. It can be difficult for healthcare professionals to predict exactly how long someone with a terminal illness will live (their prognosis). This is difficult to navigate for families who don’t know how long they have left with a loved one. 

People can grieve a loved one even though they are still alive, they watch them deteriorate in their health and perhaps they can’t carry on doing activities together that they used. It can be incredibly challenging to watch someone you love transform into a person you never thought they could become losing abilities they once had. You can start to grieve the future, knowing  

that future plans you once had may now not happen. There are many ways people may go through anticipatory grief an outcome from several illnesses including but not limited to advanced cancer, dementia, lung disease or heart disease and Parkinsons.  

My own experience of anticipatory grief was when my Grandpa was diagnosed with mesothelioma a cancer of mesothelial tissue, associated especially with exposure to asbestos.  Not knowing how long we had left with him was unbearable. I was recently engaged and thinking about getting married we had already started to look at wedding venues. My thoughts turned to my wedding, I couldn’t imagine my Grandpa not being there. My now husband and I spoke and decided to get married sooner rather than later as we didn’t know the time scale we had. With help from family we planned our wedding in just 6 weeks. Things like fancy dresses, table decorations and the other wedding stuff didn’t seem as important anymore. The important thing was my Grandpa being there. We did it! He was at my wedding and we danced together to his favourite song, a memory I will cherish forever, I was so thankful to have that moment. I will never look back on my wedding and feel anything but happy we did it so quickly. Our wedding  day was 5^th April 2014 

He lived for another year, passing away on April 15, 2015. I had hoped he would live to see the birth of my first child on July 8, 2015. However, I find comfort in knowing that he was aware I was expecting, and that this knowledge brought him moments of joy during his illness. Witnessing his health deteriorate and seeing him go in and out of the hospice was heartbreaking. When he died, I was surprised by my feelings; I felt relieved. It was a relief that he was no longer in pain or suffering, an emotion I hadn’t anticipated experiencing when he passed away.

Most of us will know someone who has gone through an anticipated death or is currently anticipating the death of a loved one. We can try to offer our support and let them know we are there for them. Anticipatory grief can have many symptoms that you can look out for. 

Emotional Symptoms: 

• Sadness: Deep feelings of sorrow about the impending loss. 
• Anxiety: Worrying about the future and how life will change. 
• Anger: Frustration and anger about the situation and the unfairness of it. 
• Guilt: Feeling guilty about grieving before the loss has occurred or for wishing the suffering to end.

Physical Symptoms: 

• Fatigue: Feeling physically exhausted from the emotional burden. 
• Sleep Disturbances: Trouble falling asleep or staying asleep. 
• Appetite Changes: Loss of appetite or overeating as a way to cope with stress.

Psychological Symptoms: 

• Forgetfulness: Difficulty concentrating or remembering things. 
• Withdrawal: Pulling away from social activities and support networks. 
• Preoccupation: Constantly thinking about the impending loss and what it will mean. 

It’s important to remember that everyone grieves differently, and everyone’s grief journey will take its  own path, and this is normal. 

Here are some tips to help cope with anticipatory grief 

While anticipatory grief can be overwhelming, there are strategies to help manage these feelings and  prepare for the future: 

• Acknowledge Your Feelings: Recognise that your feelings are valid and normal. It’s okay to grieve the loss that is coming, and acknowledging your emotions can be the first step in coping with them. 
• Seek Support: Talk to friends, family members, or a therapist about what you are going through.  Support groups, both in-person and online, can also provide a space to share your experiences and feelings with others who understand. 
• Create Memories: Spend quality time with your loved one and create lasting memories. This can provide comfort and a sense of peace when the loss occur. 
• Plan: Discuss and plan for end-of-life care, funeral arrangements, and other practical matters. Having a plan in place can reduce anxiety and help you feel more prepared. 
• Practice Self-Care: Take care of your physical and emotional well-being. exercise and enough sleep,  exercise, and engage in activities that bring you joy and relaxation.

Anticipatory grief is a natural and often inevitable response to the impending loss of a loved one.  Understanding and acknowledging this type of grief can help those affected navigate their emotions and prepare for the future. By seeking support, practicing self-care, and cherishing the time remaining, individuals can find ways to cope with anticipatory grief and ultimately find peace in the midst of their sorrow. 

If you or someone you know is going through anticipatory grief be kind to yourself and take each day as it comes. Try to find moment of joy in the time you have left with your loved one and cherish happy memories.  

Our thoughts and heartfelt wishes are with Rob Burrow’s family during this difficult time.