- The Experience of Loss
- Adding to Grief
- The Emotional Rollercoaster
- Feelings of Guilt
The grief that families feel when a loved one sustains a brain injury can be profound and long-lasting.
Each person deals with grief in their own way; it can be a very personal and complicated journey, especially when the loved one is still physically present but psychologically absent.
There can be differences in the type of grief families feel and this is often related to the severity of injury incurred by their loved one. Even a ‘mild’ traumatic brain injury can cause feelings of loss and confusion. Parents share their children’s’ dreams as well as holding them for themselves and spouses do the same.
For families of the severely injured, there can be an intense sense of missing their loved one, of missing their love, support and contributions to enjoyment and life.
While there are no defined pathways for dealing with the ambiguous loss you feel, knowing that you are not alone, that there are others going through similar experiences and that many more professionals who specialise in caring for people living with brain injury now have a better awareness of how families are affected can all help people feel less isolated in their grief.
The experience of loss
Empathy for a loved one who is hurt can leave you feeling bereft and in many cases can initially leave people without hope and having no idea what to expect or having any understanding about what is now expected of them.
Although the experience is technically an ambiguous loss because there is no finality, the type of grief people struggle with after uncontrollable, and often traumatic external change can be overwhelming.
How do you begin to understand what it means to mourn the loss of someone who is alive? Many parents, for example, declare that they would willingly give up their own life that their child could have theirs back.
Hearts and dreams are broken as families struggle to gain insight into what has changed. The complexities are overwhelming in and of themselves and leave people feeling numb, deprived and with a million questions that there are seemingly no answers to no matter where or how hard they look.
Adding to grief
Without experience, families don’t know what to think or where to start and turn to doctors and specialists for information and advice. This advice does tend to be focused on the patient or loved one and is, therefore often lacking in the kind of inclusion that people need.
It can be very challenging for neurological specialists to give a prognosis because every single brain injury is unique. Very often, it will take time before a thorough assessment can be made, and even then, this will not always predict the outcome.
This lack of information can be perceived as standing in the way of holding meaningful hope and however true it is that each person will journey their own path following a brain injury this doesn’t make it any easier for families to understand.
Going home to a child or any other family members and telling them that no one knows what will happen can be tough to do, to manage and to accept. These struggles all add to the sense of helplessness and grief that people feel.
Without support and inclusion, without any understanding of their needs, families can feel isolated, abandoned and over time, can feel forgotten.
The emotional rollercoaster
How people react will be entirely personal. Some people are overcome with worry, and others realise there are practical issues that need to be dealt with either urgently or along the way. Everyone reacts in an individual way often depending on their relationship with the injured person, their personality type and how practical they are. In many ways, the family experience is similar to how every brain injury and the person directly affected are unique.
There are no ‘rules’ or ‘right/wrongs’ because there are many different ways of coping.
Small changes can seem like massive milestones and feelings of gratitude for these can be immense and overwhelming. These can be seen as a person ‘coming back’ from their injury, and while they give hope, they can also give false expectations when these signs of recovery are not repeated or don’t occur again in the same way. Families can feel catapulted from gratitude to grief.
Many people never have it explained to them that recovery from a brain injury can be inordinately slow, so it is no wonder that they envisage or suppose that each little twitch means something. While the neurological staff may point this out to family members, it is often the case that people still need to learn by their own experience.
Feelings of guilt
For example, people may feel:
- sad about some things but happy about others
- alone even though they are connected to and surrounded by family and friends
- powerless and unable to bring control to their lives but at the same time driven to get through the situation
- resentful about the injury to a loved one but thankful they are still here
- burdened by overwhelming changes but grateful for other aspects of their life
- doubtful about the present or their future but hopeful and desiring and aiming for change
- frozen while they are transforming and healing
Ambiguous loss is understood to be a very complex form of grief. It isn’t unusual to feel inner conflict or guilt about ideas and thoughts. Some thoughts may be based on a realistic point of view but can be undermined by emotions and feelings of loss and confusion.
Perhaps one thing people can expect to feel is being yoyoed from one emotion or thought to the next.
In time you will work this out. Each person finds their own unique path that feels the most right for them. What is clear is that you will need inexhaustible reserves of strength and will need to be flexible and push all know reason outside of its box.
In many ways, it is like living at least ten life experiences all at once. Surely you must have been chosen?
Every time you feel that you have climbed a mountain, you will come to the peak and see another. That there is purpose and opportunity for growth in all of this isn’t always what most people think of or expect.
Every person finds their own way through and their own way of coping and while there may be some people in your circle who think you should do things differently, let them think and let them speak, they aren’t experiencing anything close to the things you are. Release and let go and understand that everyone is doing and being the best they can be.
Ambiguated loss is complex grief and will follow similar stages of emotional disruption. Find out all you can so that you are better prepared. Details and processes of grief can be very similar to what those who are living with a brain injury go through.
People that you were close to before may make contributory remarks with the best of intentions, such as talking about how strong you are or how well you are managing. In times of meaning these sentiments can seem shallow when you are facing the most critical issues you have ever come across.
Very often, people want to step up and help but don’t know how to. It is okay to be open and to both telling people what you need and to ask for help.
For this reason, it is important that all professionals dealing with the management of a brain injury case are sensitive and aware of the challenges any member of a family can face. Children can be hurt and confused too.
Don’t be afraid of asking your loved one’s specialists for pointers and help. As well as doing some research you can speak to your doctor or might be able to find a charity or organisation happy to support you. Whatever you do, reach out!