EMMA HEMING WILLIS: 'The signs Bruce was fading were there, but I didn’t know what I was seeing.'

This is a book extract from The Unexpected Journey by Emma Heming Willis, published by HarperCollins. You can buy it here.

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When I suspected something was "off" with Bruce but couldn't put my finger on what it was, I went through every possible explanation in my head.

Was there a problem in our marriage?

Was it Bruce's sleeping difficulties?

Maybe it was his hearing loss.

During the filming of the first Die Hard movie in the late '80s, there was a scene where he had to fire a gun underneath a table.

When it was shot, oddly, Bruce wasn't wearing any protective earplugs, and he lost a large percentage of his hearing in one ear.

When we first got together, this never posed a real problem.

Years later, however, I began to notice him sort of check out if we were at a dinner party or meal with the entire family.

Watch: Emma Heming Willis on World FTD Awareness Day. Post continues after video.

He would sit back and let everyone else do the talking without contributing very much.

Mind you, when we would get the family together, Bruce was usually the only man at a table full of women, with me, our two girls, and his three older daughters speaking a mile a minute and over each other with excitement.

Initially, I thought he was just letting us have our girl time to "yack it up," as he would say, rather than trying to get a word in.

I assumed his hearing loss made it easier for him to melt into his seat with his hands clasped gently on his lap.

But, in hindsight, that wasn't the Bruce I knew. Especially when it came to connecting with his daughters.

Bruce was a family man at heart. Early on in our relationship and before we had children together, he wanted to spend as much time with his older girls as possible.

If we were travelling, he was always dying to return home to them, calling the feeling a "gravitational pull," which always brought him back to his girls. This was something I loved about him.

Today, I understand that his checking out at the table was likely due to cognitive overload and difficulty processing conversations, which is common in primary progressive aphasia (PPA), the variant of Frontotemporal Dementia (FTD) that Bruce has. It was an early symptom of his disease.

"Bruce was a family man at heart," writes Emma Heming Willis. Image: Getty.

Getting a diagnosis.

Many families spend years living with a lot of confusion around symptoms prior to a diagnosis.

From speaking to other care partners, I have learned how subtle (or not so subtle) symptoms of certain forms of dementia like FTD or Lewy body, for example, can rock a whole family system and destroy it.

(This is not always the case with certain dementias such as Alzheimer's, where symptoms like memory issues are more obvious and usually more of a straight line to a diagnosis. Each form of dementia is different, which is why it's important not to lump them all together.)

For FTD in particular, in those early years, no one suspects the diagnosis because most people have no clue what FTD is.

So they assume their person is being rude, apathetic, withdrawn, depressed, irritable, impulsive, or reckless, or they lack empathy—an array of behaviours that seem like personal choices rather than symptoms of a disease.

This major shift in behaviour, language, and/ or personality is frustrating, confusing, and can ruin relationships. FTD is not your doctor's first or second thought either.

Often FTD is misdiagnosed as a midlife crisis, depression, or bipolar disorder, to name just a few, because the symptoms can apply to all those conditions.

Bruce Miller, MD, the leading expert in FTD, distinguished professor of neurology at the University of California, San Francisco, and head of the Global Brain Health Initiative, explains:

Many of the symptoms are very elusive, and they are different for each neurodegenerative disease. So, while it may be easier to recognise that a memory problem is Alzheimer's, it's trickier to understand that a change in language or personality is FTD or another form of dementia.

Most of us think the brain is only important for memory and language. But the brain is also responsible for our social interactions, how we relate to others, and how we nurture and empathise with them.

The Unexpected Journey by Emma Heming Willis. Get your copy here.

Most of us don't know this or anything else about FTD, and all you see and experience is that something is incredibly different with your loved one.

Also, if you're like I was, you may feel strange bringing these things to the attention of your partner's doctor, especially if that doctor is not your own.

Initially, I was uneasy going over Bruce's head in that way. Something about the morality of it didn't sit well with me.

If you feel that way, too, consider the advice of Yolande Pijnenburg, PhD, a professor of young-onset dementia at Alzheimer Centre Amsterdam at Amsterdam University Medical Centre in the Netherlands:

"If your feeling gets stronger that this change in behaviour is something that person can't help, you have to trust that feeling because you're actually acting to benefit your partner."

Subtle changes due to dementia can go on for years, and all that time your person looks fine on the outside.

Even more bewildering is that there might never be a moment when he or she expresses concern to you or to a doctor that something is wrong. There's actually a medical term for this: anosognosia.

According to the Cleveland Clinic, anosognosia is a "condition where your brain can't recognise one or more other health conditions you have. It's extremely common with mental health conditions like schizophrenia and Alzheimer's disease.

This condition isn't dangerous on its own, but people with it are much more likely to avoid or resist treatment for their other health conditions."

So if your person isn't raising his or her hand for help, it's easy to think that maybe everything is okay. This makes those early stages confusing, and it's why doctors can easily overlook FTD and other early-onset dementias again and again.

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"It can take at least two to three years to get a diagnosis, and in that time, many people are misdiagnosed," explains Dr. Miller.

This delay can be a catastrophe, as families can be completely derailed and dismantled — emotionally and financially — by the personality changes and shifts in their loved ones from their brains quietly dying.

Over time, I began to suspect that the issue wasn't Bruce's hearing or a rocky patch in our marriage, and that instinct made me realise that we should go to the doctor.

As a result of this experience, I can't stress enough the importance of trusting your gut when you know something is wrong.

Even if test results come back "normal" or a doctor dismisses your concerns, don't stop pushing for answers. If your doctor isn't listening, find one who will. You know your person best. Keep advocating for them and yourself.

As I mentioned in Chapter 1, I felt some relief in finding out that Bruce had aphasia and then, a year later that he had FTD.

I finally understood that those crazy marital issues were not Bruce. Neither were those off moments and subtle shifts in his personality.

They were the result of his brain being dismantled, taking part of the husband I knew and loved with it.

You weren't doing any of this on purpose, I thought. 

Feature Image: Instagram/emmahemingwillis.