There are many misconceptions about grief, not least of all, the period when the grieving process is supposed to take place. These misconceptions can leave those who are grieving wondering if what they are experiencing is ‘normal’ and this added concern about whether they are ‘doing grief right’ can add a whole extra layer of unnecessary worry and stress. This is especially true when the grieving process starts before a death.
This is a normal and natural thing for some people to experience, especially when a loved one has an illness such as cancer or dementia which will lead, eventually, to their death. It is known as ‘anticipatory grief’. This doesn’t mean that they will be anticipating the grief which will occur after the person dies, it means that they are experiencing many symptoms of the grieving process right now, even whilst their loved one is still alive. Perhaps an easy way to explain it is that the grief is anticipating the death, not that the death anticipates the grief.
It’s important to note from the start that not everyone will experience anticipatory grief and not everyone will experience the same symptoms of anticipatory grief at the same time. The grieving process is as unique as the relationship that you have with your loved one. This can sometimes be a source of conflict in relationships as it can be difficult to understand why others do not feel the same way as we do. Experiencing or not experiencing anticipatory grief does not mean that you love the person any more or less than anyone else. Understanding the process of grief can be a good way to appreciate and be gentle with our differences and also to allay any fears that what you are experiencing is in some way wrong or abnormal.
With anticipatory grief, the process can start a long time, sometimes years, before the person dies. It can often start when the symptoms first arise and through the period of diagnosis; a time of uncertainty and often shock. Then can come a period of adaption as everyone adjusts to the new reality of living with a progressive illness with all its ups and downs. Finally, at some point the illness will move into its terminal phase and so begins another period of adjustment. Even within themselves these three phases can last anything from a few days to many years. It’s difficult to predict how long someone has to live and so there is often a great deal of uncertainty for loved ones, and this can be hard for some people to cope with.
That uncertainty can lead us to remaining in a ‘fight, flight or freeze’ response as we become hyper-vigilant to any changes in the health of the person who is dying. Therefore, the range of feelings and emotions we may experience are those that occur during a trauma response. Anger, fear, sadness, anxiety, depression, desperation, frustration, numbness, guilt are all natural reactions. It can be an exhausting rollercoaster of emotions.
And all the while, we are watching a loved one dying. And during that time, the relationship we have with them will be undergoing changes. Perhaps we are now having to provide personal care for a loved one, perhaps they are hospitalised or their capacity is diminishing. Perhaps they want to fight death as long as possible, perhaps they feel their time has come. Perhaps they are in denial and death remains the unspoken elephant in the room.
For loved ones, the changes in the relationship can be difficult to process. The husband of 50 years who always cooked Sunday dinner, the mother who attended every sports event, the sister who was the go-to person for advice, the friend you went to every gig with. Changes in the dynamics of that relationship can really hurt as we start to mourn the loss of the person they once were and adjust to a new normal of periods of stability, glimpses of hope, but ultimately a deterioration of their physical and/or mental health. It can help to be honest, with yourself at least, how this feels for you.
Relationships are all about communication, so sharing your thoughts and feelings with others can be tremendously helpful, whether this be the loved one themselves, other close relationships or a therapist. This is an important time in your relationship with the person who is dying, and it is still a period where you can be making meaningful memories to take into your future. It may be a time to reflect on your lives together, plan the practicalities for after the death, maybe lay old grievances to rest. There is no right way and no wrong way to do it; the only truth is that you will not get this time back so use it in the best way for you.
No matter what your relationship has been like, it can sometimes be the case that you long for the death to happen sooner rather than later. This does not make you a bad person. It is a very humane response to the pain and suffering of others to wish it to end. And for ourselves, it is natural that we may sometimes feel at the edge of what we can cope with mentally and emotionally and just want all those rollercoaster emotions mentioned above to stop. Be gentle with yourself.
You may find yourself imagining the death of your loved one before it happens. What will they look like? Will there be pain, or will it be peaceful? Will you be present, will there be others there? What will your immediate rection be when you hear they have died? Fantasising about the death is a common way of trying to process the forthcoming loss but one that is rarely spoken about. But many of us can find ourselves in loops of trying to plan out future conversations and events in our heads as a coping mechanism; this is true of any situation which causes anxiety and therefore it makes sense that we would do this for something as significant as a death. You are normal if this is happening to you. Speaking with a trained therapist can be helpful to process these thoughts which can be difficult to share with others. And remember, as with anything else in life, we cannot predict the future when it comes to death. You might believe these thoughts are helping you to prepare, but when the death comes, it is never exactly like we imagine it will be, no matter how many variations of scenarios we have imagined.
Your own life may feel on hold and there can be many emotions to process around this. It can be difficult to manage day to day life. Can you book that holiday, is it right to be planning a wedding, how much time can you take off work for hospital visits/caring commitments before your boss stops being accommodating? Your life is full of uncertainty, and it is out with your control. Managing the needs of others as well as our own and the person who is dying can leave us feeling emotionally exhausted and stretched to breaking point.
Taking time for yourself is so important right now. It might feel self-indulgent, but it really isn’t. Self-care is how you learn to be stronger and create the resilience you will need for the days, weeks, months or years ahead. It is how you learn to ride those waves of uncertainty and distress instead of drowning. What is your go to method to relax? Whether it is going to the gym, sorting out the tools in your shed, spending time in nature, losing yourself in a book or binging on Netflix, this is what you need in your life right now. But you also need connection with others; it’s okay to still go on that night out, it’s okay to still laugh with friends and it’s okay to feel love and connection with the other people in our lives who will still be with us after the death. It’s so easy to make excuses or feel guilty about doing any of these things, but they are exactly what will give us the resilience to manage this time in our lives.
Another misconception about grief is that we have a finite amount of it or that there is some magic length of time that it lasts. There is no ‘six months' rule, no way to predict how long your own individual grieving process will last. Anticipatory grief does not mean that the grieving process will stop sooner after the death; just because you started mourning the loss of a loved one five months before they die, this doesn’t mean you have one month of grieving left to do before you are ‘better’. Instead, the length of time we are grieving is as unique as our relationship with the person who has died.
Just as life and death are inextricably linked, so are love and loss. Anticipatory grief is normal as you start to notice all the little losses mounting up prior to the final loss that is death. Trust that you will get through this but remember that you do not need to do this alone. Speak with your loved one if you can, have conversations with friends, family and colleagues. Let them know how you are feeling and accept help when it is offered. Consider therapy; a trained counsellor can offer a safe, non-judgmental and compassionate space for you to explore all your thoughts, feelings and emotions. Seeking help is not a sign of weakness; think of it as self-care. A time for you to be heard and to find new meanings; a time to discover new facets to your personality, to nurture your strengths and to appreciate that what you are experiencing is normal.