There are diagnoses that make the world stand still for a moment. Emma Heming Willis describes precisely this moment: When her husband, actor Bruce Willis, is diagnosed with frontotemporal dementia, she leaves the doctor’s office not with a plan, but with emptiness. Even a global filmstar, who can presumably afford the best medical care and advice, ends up being handed a brochure – and told to come back in a few months.
No map. No real clues as to how to proceed. Just the feeling of suddenly being the navigator in a terrain that no one voluntarily enters. “The unexpected journey” is exactly the book that Emma Heming Willis would have wished for at the time: not a slickly polished guidebook, but a travel guide for people who accompany a loved one with dementia – and often lose sight of them themselves in the process.
The hardest hurdle is not a lack of time, but a feeling of guilt
A message runs through almost the entire book, which carers often only really accept at a very late stage: The most important thing you can do for a person in need of care is to take care of yourself. Not as a wellness phrase, but as a survival strategy.
Emma describes how her basic state was long characterized by worry, fear, tension and catastrophic thinking – and how she had to learn to allow her feelings without letting them take over. The change in perspective that the book repeatedly calls for is pleasantly clear: Self-care is not selfish, but self-sustaining. Those who provide long-term care must themselves remain sustainable. When carers burn out, everything collapses in the end.
This is precisely why it is so powerful that these sentences do not come from someone outside, but from someone who is in the middle of a care situation. In Germany and Austria, the majority of care is provided at home. 80% of people in need of care are cared for at home; family carers are the largest private care provider. And only around a third seek help and support.
This makes it all the more important to have a book that doesn’t romanticize care, but instead honestly describes what it does to people: How much it binds them, how much it takes over – and how difficult it can be not to lose oneself in the process.
Self-care doesn’t have to be big
“The unexpected journey” gives caregivers something that is rarely said openly: Permission to take a deep breath. Emma clears up a typical trap: “Time for yourself” is not automatically a spa weekend or a day off. It can be much smaller – and therefore more realistic. Getting a favorite drink. An undisturbed bath. A long walk. A few minutes around the block.
She starts gardening herself and creates a little oasis in the garden where her soul can take a short break. A simple question is crucial for her: What were my simple everyday pleasures before I became a care partner? And then: Reserve a few minutes every day for these special moments.
These are the quiet, loving passages in the book that stick with you. It’s not about perfection. It’s about one tiny piece of evidence per day that your own life still happens. And yet – Emma doesn’t sugarcoat the way there. She writes openly about how feelings of guilt can poison any time out. Especially when you experience something beautiful while your loved one can no longer be there. What helps her is a thought that relieves the burden without trivializing it: Two things can be true at the same time. You can grieve – and still have a good moment.
Her view of children is also particularly important: Breaks are not just “for me”, they are also a role model. Emma shows how to find language for these moments (“I’m very sad at the moment, I’ll take a breath for ten minutes and then I’ll come back.”) – and how children learn that feelings are allowed to be there.
A travel guide through the stages of an illness – with many expert voices
Many experts have their say in the book. These voices do not act like interspersed quotes, but like railings: They stabilize, classify and give practical advice – without ignoring the experiences of the carers.
One key point: Getting help is not an optional extra, but a prerequisite. With support, time can even become “more beautiful” again. Without help, stress and pressure increase, patience and nerves are severely strained – and this does not remain invisible. The people being cared for also feel this strain.
Emma also describes very clearly how quickly carers can disappear from friends and the community – and how isolation can increase stress, tension and depressive symptoms. You can’t go down this road alone, so she explicitly recommends building a network of helpers: Friends, family, research networks, support groups, therapeutic support. The idea of the “village” is one of the strongest parts of the book. It doesn’t just take a village to raise a child – it also takes a network to care. Emma describes in great detail how the network of trusted experts gave her stability again.
What remains reading this book
“The unexpected journey” gives caregivers something back that is often missing in the system: Permission. Permission to need help. Permission to have ambivalent feelings – and still be a good person. Permission to take your own well-being seriously – not as a bonus, but as a foundation.
This book is full of concrete ideas – not as a rigid checklist, but like little railings along the way. And perhaps that is the best “collection of tips” it offers: Not the perfect routine, but lots of small, doable actions that say: You are not alone. And you mustn’t lose yourself.
Emma Heming Willis: The unexpected journey
Finding strength, hope, and yourself on the caregiving path
In the author’s blog (emmahemingwillis.com) you can find further articles by Emma Heming Willis and other experts on the subject of dementia. As the content is in English, we recommend using translation software such as DeepL or Google Translate.
Important note: The information in this book – including the author’s experience and the opinions of experts – is for information purposes only and does not replace medical advice. It is not a substitute for professional medical help, diagnosis or treatment.
Author: Anja Herberth
Chefredakteurin
