Finding help in the first dark days

Receiving an end-of-life diagnosis is shattering. But the impact is one that can be shared, and help is available from the first moment onwards. For body and mind, there are professionals available for patients, family, and carers, throughout the journey.

Each person will deal with the revelation of their end in their own way. There is no right way to proceed or feel. But there are things that can be done to ease the shock, to help take stock, to get better informed for what is to come.

With bad news comes an avalanche of emotions. Some receive the news with despair and feelings of powerlessness. Others feel anger at the unfairness of the situation. Some become anxious, or deny the reality of the situation, or, and find an inner determination to fight. Many will experience a mixture of these.

There might be many people who need to know eventually, but in the immediate aftermath of receiving diagnosis perhaps you need to share your feelings with just one person. This might be a loved one, good friend or spiritual advisor. Alternatively, you can always call a mental health helpline such as CareInMind or Head to Health, where you will be guided to an appropriate service.

The diagnosis also brings sudden and profound uncertainty, followed by many unfamiliar questions. How long will I live? Will I stay at home, or will I need to move to a hospice? How will the symptoms progress? What will my quality of life be?

Each question creates more questions. It can be overwhelming. And with so many answers people often struggle to take it all in, only grasping about half of what they are hearing.

Having someone join in with doctors’ consultations, then, is a good strategy to help keep track of the information. The support of a friend or family member can be invaluable.

Many people who discover their life will end sooner than they imagined become depressed or anxious. Seeking professional support is important. These conditions can be eased with proper treatment.

In most cases, your GP or specialist will be able to provide you with contacts appropriate mental health care services. Again, helplines such as CareInMind or Head to Health can help.

Precious Time lists several services in this field, including specialist organisations for culturally and linguistically diverse people, young people, and veterans. Enter ‘mental health’ into the search field and press ‘search’.

Good communications with GPs, specialists and mental health professionals can be an important part of navigating a life-limiting diagnosis. They can help people to properly understand the diagnosis and its development over time.

Research suggests that better understanding the situation leads to an easier journey in the last years, months, or days. This is because many problems can be avoided, unnecessary hospital trips can be dodged, and symptoms can be managed to reduce discomfort and maintain abilities.

As the immediate impact of receiving a life-limiting diagnosis starts to wane, the questions that followed in its wake assume more prominence. It is natural to want to take care of yourself, while also ensuring that those you leave behind are not left in need.

Palliative care organisations, such as Palliative Care Victoria can provide advice, support and assistance. It’s important, too, to consider advance care planning – in which you set out clear instructions about the types of treatments you want, and don’t want.

And, of course, much support can be found in family and friends. If it feels right, conversations with loved ones can help to process information and to start working out what the final chapter might look like.

Similarly, conversations with others who have a life-limiting illness can give some solace and perspective.

This website contains advice and information on how to initiate these sometimes difficult discussions, based on advice from palliative care and other end-of-life specialists. You can find these on the home page. [LINK]

Precious Time can also help you link in with a wide range of support groups. Simply use the search field to start locating them.