Dealing with ambiguous loss

Dealing with ambiguous loss can be hugely challenging for individuals and whole families. Here, Luke Cook, head of rehab and nursing at Askham Rehab, offers his insight into its impact and how to seek a way forward

In the world of specialist rehabilitation, we often find ourselves navigating the complex emotions associated with what is known as ‘ambiguous loss’.

It’s a term that doesn’t roll off the tongue easily, yet its significance cannot be overstated.

It refers to a type of loss where you’ve experienced a significant change in life, but you’re left without a clear roadmap on how to cope with it.

The impact of ambiguous loss

Ambiguous loss is a unique and profoundly challenging experience for individuals and families, particularly following life changing accidents or illnesses.

This emotional journey is one that necessitates understanding, validation, and a level of awareness that goes beyond the conventional grief.

I’ve seen numerous families grapple with the profound sense of loss that accompanies a serious brain injury or similar traumas.

Often, these individuals spend a significant portion of their lives projecting their futures with a loved one, only to have those dreams drastically altered.

It’s crucial to understand that the feeling of loss, even though the person is physically present, is normal and entirely valid.

Many individuals found in a specialist rehabilitation setting are often around 50 years old, at a stage in life when they were expecting to embark on a new chapter, possibly without the responsibilities of raising children and with financial stability.

This sudden shift in life expectations can be particularly challenging to accept.

The crucial role of empathy

The key to dealing with ambiguous loss is fostering empathy and compassion.

It begins with acknowledging the emotions that arise when you realise your loved one may never be the same again and it’s okay to grieve this loss, even though the person is still alive.

Grief isn’t reserved exclusively for when someone passes away, it can be a constant companion in a rehabilitation setting.

By simply recognising the phenomenon, you can help justify someone’s emotions and allow them to address the issue, rather than being shackled by the confusion associated with it.

One of the hardest things for families experiencing ambiguous loss is not being in control.

They, quite naturally, often seek to control outcomes when dealing with complex brain injuries, attempting to shape a future that is largely unpredictable, even for our specialist teams.

This need for control can often present itself as anger when those outcomes remain beyond their reach.

Unlike the fast-paced environment of a hospital immediately following an incident, the rehab setting provides families with the time to process the reality that their loved one won’t be the same again.

This is when ambiguous loss most typically surfaces, as they begin to come to terms with this painful truth.

In the midst of such uncertainty, it’s crucial to provide support, understanding, and the reassurance that they are not alone in their journey.

The danger of the internet

In today’s digital age, the internet can be a double-edged sword, offering both information and misinformation.

It can inadvertently fuel false hopes about patient outcomes, making it essential to understand that every case is unique.

Each individual’s path to recovery, or adaptation, is distinct.

Seeking professional help is always a positive solution and psychologists, with their expertise in addressing complex emotional issues, can offer guidance, coping strategies, and emotional support dealing with ambiguous loss in the rehab setting.

As with all mental health struggles, the earlier you open up about it and seek help, the quicker you can come to terms with it and learn to rewrite the future that you once projected with a loved one.

In the context of rehab, the support of loved ones is often the key source of determination in our patients, so it’s important to process what has happened and focus on being a source of hope for the individual.

The key is to recognise that it’s totally normal to feel the way you do. Embracing ambiguous loss as a concept, supported by the assistance of mental health professionals, can help pave the way for emotional healing.

• Luke Cook is head of rehab and nursing at Askham Rehab, who works with a team of experts specialising in intensive neurological rehabilitation, hands-on therapy, and robotic and sensor assisted rehabilitation technology to empower people to regain independence after life- changing injury or illness.