When an individual is faced with a terminal illness, you as a loved one or friend may experience what is called anticipatory grief. How could you support a family member or friend bereaved by a terminal illness? How do you support a loved one who’s terminally ill? A terminal illness, also known as an end-stage disease is a condition which cannot be cured or effectively treated and is usually expected to result in the person’s death.
Examples of illnesses that may be terminal include:
- Lung disease
- Parkinson’s disease
- Advanced cancer
- Dementia (including Alzheimer’s)
- Motor neurone disease (MND)
What is anticipatory grief?
Most people expect to experience grief after the death of a loved one, however, anticipatory grief is the grief that occurs before a loss. This type of grief is common among individuals facing the eventual death of a loved one or their own death.
Anticipatory grief describes the pain and distress that a person may feel in the days, months or even years before the death of a loved one or other impending loss.
What You Might Feel When Experiencing Anticipatory Grief?
When talking of terminal illnesses, some people survive them, some people live with the illness for a while and pass on and some people, unfortunately, don’t have long to live after their diagnosis. Unfortunately, my father fell under the latter in 2018 when he passed away from cancer.
I remember my mum phoning me to tell me that my dad had cancer – the three emotions that filled my mind were: shock, denial and fear. Little did I know that I was experiencing anticipatory grief at the time.
Following on from this, half of my mind immediately thought of death, and the other part of me thought of the many people that have had cancer and beat it!
I remember searching how long people typically live when diagnosed with cancer and I saw this was dependent on the type of cancer they had, the stage that it was at – I was met with so many medical terms and had no idea of their meaning.
It was almost as if my mind went straight to the loss before it even happened – and unfortunately, it did, 3 months later.
From the moment my dad was diagnosed with cancer to his passing, he was in and out of the hospital. Every time I would be alone with him, I’d feel a huge sense of guilt. I would try and get him to eat but he could not each much, he was in so much pain and there was nothing that I could practically do to help. The 3 months were emotionally distressing as well as hard to process.
How to cope with anticipatory grief
- Be willing to share your feelings
- Maintain hope
- Prepare for death
Here are some things that I wish I got to do with my dad or ways that I wish I could have supported him during his diagnosis. Unfortunately, as pessimistic as this may sound time doesn’t stop, the length of time isn’t guaranteed but you can always make the most of the time that you have.
How do you support someone who is going through a terminal illness?
- Just be there!
You may feel like you’re not doing much – but never underestimate the value your presence carries! Be sure to spend as much time with your terminally ill loved one as you can. They may not be able to speak, move or express themselves much, but simply holding their hand, brushing their hair or moisturising their skin can show acts of care.
It can be easy at times to attempt to avoid visiting the terminally ill loved one, out of fear, not knowing what to say or perhaps because you are struggling to come to terms with what’s to come. Irrespective of your feelings, always remember how much your loved one will most likely need you in those moments, even though they may not be able to physically express how much they would want you present.
On the other hand, it is also important to take care of yourself during this time. Just being there in the moment can be extremely draining and a lot to take on emotionally. Ensure you have a safe space to gather, process and unpack your emotions.
- Provide emotional support
The terminal illness itself can fill your loved one with a range of emotions, such as anger, fear, extreme sadness, depression, denial, and at times even relief and acceptance. Simply reassuring them that it’s okay to feel what they feel, even though you cannot physically experience what they are going through is helpful.
At times individuals with a terminal illness do want to talk about what is happening but may be afraid that the subject will upset or trigger their carer or family members. Giving your terminally ill loved one the space (if they so wish) to talk about their pain, death, and how your family will cope after their death – can be both valuable for them and yourself.
However, providing emotional support does not always have to be so deep; it can also be found in the simple things such as singing their favourite song, reading them a book, expressing how much you love them or simply sitting with them without talking.
As well as providing emotional support for your terminally ill loved one – remember to also be in a space where you can process what is happening. As you are essentially preparing your mind that someone who is still alive is about to die – especially when you don’t know how soon this will be. This can be a very hard thing to not only deal with but also accept.
In this circumstance, with my dad, the cancer was spreading so rapidly through his organs. I was finding it incredibly difficult to process everything that was happening at the moment – at times I had so much faith, or perhaps I was in denial.
I remember one day coming back from the hospital and just crying in the car because my dad’s situation was progressively getting worse. Apart from a few individuals that were close to my family and my immediate family, none of my friends knew of what was happening.
In hindsight, I really wish I had the opportunity to unpack my emotions with a friend or someone that was not so much involved through the process.
As a loved one or carer of a terminally ill individual, you must have a space to process your emotions and unpack them. Express your pain, talk about your grief before the death itself, and your fears. Talking to a trusted friend is a good way to handle these feelings.
- Share/talk about memories
As hard as this may be, try not to focus too much on their condition – one way you can take the attention away from their condition is by talking and sharing different memories. If you’re a friend, this could be sharing memories of your childhood.
As a spouse, this could be reminiscing on the first day you both met or even your wedding day. Sharing memories will most likely help to uplift your loved one at that moment and help to bring some sort of joy during what will often be a painful and confusing time.
Sharing memories could also look like going through old photo albums and looking back at monumental moments in their life. Also giving them the voice to share their own stories. But the memories do not have to stop there!
You could come together with family and friends to fill a book with your favourite pieces of advice that you received from your loved one, or fill a book with their favourite recipes or create a playlist dedicated to their favourite songs.
Although their days are numbered – their memory can still live on in your heart. This would also be useful to come back to at times when you may feel sad, numb or overwhelmed.
- Create a wish list
If your loved one has enough time, creating a wish list is a good idea to help them achieve things that they would have loved to do. Many individuals have dreams of things they want to achieve before they die.
You should encourage your terminally ill loved one to enjoy the rest of their life or remaining time to the fullest. When deciding what to add to their wish list, consider their physical limitations (if they have any at the time).
This could be anything from:
- Running a mini-marathon
- Bungee jumping
- Learning to ride a horse
- Reconnecting with old friends
- Taking a painting class
- Wine tasting
- Writing a book
- Travelling to a country they’ve never been to before
- Plan for a future without them
This step can be very tricky, as most times you as a loved one or carer do not want to accept that your loved one will die! You may feel nervous to speak with them about death because you don’t know how they will react to this.
Some individuals prepare and plan well ahead for their final days, whereas others may not simply because of time, fear or simply hoping for the best. You could ask your terminally ill loved one what they would want their funeral to be like – maybe they would love a particular song to be played or a particular poem to be read!
If you’re a spouse of a terminally ill loved one, this could be looking at a future with just you and your children (if you have any). Perhaps if you are a friend of a spouse, this could be your opportunity to put some plans in place to help the family. This could be: ensuring the children are picked up from school, providing some financial support, bringing over cooked dinners – nothing is too small!
This may also be a suitable time to review significant legal or financial paperwork together with your terminally ill loved one, so you are both on the same page. Ensure you have all the information you need in one place.
- Reassure them that their life matters
Being diagnosed with a terminal illness, your loved one may feel like their life is worthless coupled with feelings of low self-esteem and at times depression. It’s so important to reaffirm your loved one during this time by reassuring them just how much their life matters – irrespective of the illness.
Simply saying “I love you” can go a long way and show your loved one just how much they mean to you and how much you care about them.
- Permitting them to go
This one may come as a surprise but at times, your loved one may seek your permission in letting them go! Once a terminally ill loved one has come to terms with their passing on, it’s normal for them to be concerned about the family and friends that they will be leaving behind. At times the biggest support you can give them, despite how upsetting this will be, is letting them know that though the thought of losing them is unbearable, you would rather them be free of their pain and condition.
Many a time, you will find the loved one is holding on for the sake of their family/friends and permitting them to go comes with guilt. But you need to find a way to operate with their best interests at heart – and that is a very conflicting position to be in.
In the instance of my dad, I could tell that he wanted to go because the pain and discomfort he was experiencing were agonising. However, he felt our prayers were keeping him alive – and I don’t think he wanted that!
Try to find a way to let them know they have your blessing to move on from this world – and that somehow you will all survive without them. Whilst permitting them to go, this may also be a good time to build bridges and resolve any issues that they may have had with family members or friends.
After your loved one dies, you may question whether you did enough – and that is normal! Knowing that you did the best you could to support a loved one is all that matters! My personal experiences may differ from the next – considering the short length of time from my dad’s diagnosis to his passing. In hindsight, I wish I was able to support him much more than I did – but I did not think the end would be so near.
Time is transitory, it doesn’t respond to your requests or wishes. You may not know how much time your loved one has left, but simply do your best to support them today. Most importantly, be kind to yourself while caring for your loved one – it can be both a difficult and emotionally distressing time for you as well as them.