Rare killer brain disease FTD creates chaos for patients, families

David Heitz

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My dad earned the title of Mr. Ornery while living in a Memory Care facility. He suffered from a rare form of dementia called FTD, or frontotemporal degeneration.

In the sunset of dad’s life, he no longer spoke.

He went mute two weeks before he died.

A neurologist diagnosed my dad with frontotemporal dementia, also known as FTD, or Pick’s disease, in 2013.

Dad knew he had the disease before that, but never told anybody. He left thousands of dollars in cash in a safe deposit box. He left a note inside. “At the end of my life I may have to go into an institution. Here is all that may be left.”

Dad died in 2015.

He retired in his 40s and never spent a dime beyond his cheap rent and honey buns. He lived in a tiny apartment in a Section 8 building, although he did not qualify for Section 8.

He had odd habits that always made me scratch my head.

What goes on inside the brains of people with FTD

FTD occurs when the frontal lobes of the brain begin to shrink. Little is known about what causes this, but people who have it often have an abnormal amount of a certain type of protein called tau in the brain cells.

According to the Alzheimer’s Association, only 50,000 to 60,000 people in the U.S. have FTD.

When the lobes begin to shrink, it impairs what is called “executive function.” A person with FTD cannot understand how to begin a task, even if they know the result.

I’ll give you an example. When I went to see dad one day, the hospice worker was in my father’s apartment preparing him to go upstairs to the great room. I went upstairs and waited so they could do their thing. Getting dad ready never was easy.

If I were there, dad would scream and shake his fist at the hospice worker.

Dad forgets how to spit out toothpaste

Soon the elevator doors opened, and the hospice worker wheeled out Dad. He had this extremely strange look on his face. I asked him what was wrong, but he would not respond.

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The day this photo was taken dad had forgotten how to spit out toothpaste. In this picture, his mouth is full of toothpaste.

This happens a lot with people with FTD. In end stages they usually don’t speak at all. The hospice worker told me he got mad at her while she was brushing his teeth.

For 25 minutes I sat with dad in the dining room. He had this sullen look on his face and would not speak at all. I was upset.

Then something occurred to me.

I said, “Dad, is there something in your mouth?” He just looked. I handed him a cup and said, “Dad, please spit out whatever is in your mouth.” I showed him how to spit.

And he spit out the toothpaste.

He had forgotten how to spit out the toothpaste. This is executive function.

When you write about your experiences with this disease, you want to be real, but also diplomatic. Let’s put it this way. FTD has a way over time of creating hurtful feelings among networks of people.

It is stressful dealing with someone whose brain literally is disintegrating inside their head.

But imagine how they feel.

What is FTD?

There is no cure or treatment for FTD. One of the huge problems is that FTD isn’t always easy to diagnose. Symptoms can develop slowly over time, or onset and death can come within two years of diagnosis, or less. My dad’s symptoms developed over time, and only now do the pieces fit into something that has puzzled all of us for many years.

There is no test for FTD. Neurologists make determinations based on a patient’s medical history, interviews with family members, magnetic resonance imaging (MRI), computed tomography (CT) scan and position emission topography (PET) scan. The imaging techniques help a doctor rule out other problems such as tumors or stroke. They don’t necessarily confirm a diagnosis of FTD.

My dad landed in a facility in 2001. At that time, I moved back to the Quad-Cities from Los Angeles, and he moved out of the facility and rebounded. He did much better for several years before beginning to go downhill again in 2006 or 2007.

FTD different from Alzheimer’s disease

My dad didn’t have Alzheimer’s disease, but that was what doctors initially thought. People would. ask if he has Alzheimer’s. I sometimes would just say “yes” because I didn’t want to bother explaining FTD.

But those of us who have gone through this must explain it and try to help others.

FTD is different from Alzheimer’s in that it doesn’t always affect older adults, it doesn’t always impact memory the way Alzheimer’s does, and it often kills a person much more quickly.

Dad initially was diagnosed with Alzheimer’s. Talk about a disease that carries stigma. I couldn’t even say it in the presence of some family members. We referred to it as the “A word.”

You’ll find that when someone is diagnosed with dementia, the layers of denial that others have wrapped themselves in can be many layers thick. Like a stinky onion.

Most people don’t even know what you’re talking about when you say FTD, I’ve found.

Drama in All its Ugly Forms

People often joke about the amount of drama I’ve always had in my life, and I’ll admit to an extent to being a “drama queen.” But people who live with someone who has FTD will tell you the disease is all about drama.

It’s common for patients to display inappropriate outbursts. There is no couth filter on a patient with FTD. Racial slurs, sexual aggression and even violence are possible.

The stress placed on a family dynamic can be insurmountable. Patients with advanced FTD usually require 24-hour care in a facility at some point. It’s more than one person can handle.

Parents divorce, remarry, divorce

In my FTD support group, I heard a few stories of spouses who get divorced and then remarry. Each other. Again.

This struck me because my parents did the same thing. In a program about FTD on the Discovery Network, a woman talked about remarrying her husband after he explained he knew something was wrong with him. He needed her, he said, and she felt bad for him.

My parents remarried just weeks after my dad was approved for Social Security disability. He came back from the renowned Mayo Clinic diagnosed with a psychiatric problem (but not FTD … in fact, it was a rather obscure diagnosis). This is when he was in his early 40s. He lived to be 77.

I’ll spare my family the embarrassment of sharing the details, but we had lots of fighting in our house through the years. The cops would get called.

I heard stories every day in my FTD support groups that are replays of what my own family went through, right down to children sometimes being afraid of their parents with FTD. It’s heartbreaking.

What’s even more heartbreaking is watching a person with FTD attempt to hold on to their dignity as the disease slowly destroys them. My dad became incontinent nearly three years before he died. He also became unable to walk or even stand without help.

For more than a year workers at the facility had to spoon-feed dad. Spoon-fed residents would sit at a separate table. My brother and I called it Death Row.

Symptoms of FTD

Among the things we saw with dad:

* A sudden inability to manage his money or use a telephone.

* Sitting in front of Spanish television for hours when he doesn’t speak a word of Spanish.

* Complaining about loud music coming from the church across the street during times of total silence.

* Urinating on the bathroom floor.

* Constant falling.

* Filling the coffee decanter three times (or more) when making coffee in the morning, and then letting the coffee drain all over the floor. I would wake to coffee leaking down into the basement where I slept. I had to move upstairs to keep an eye on dad.

* Throwing burning cigarettes into the trash can. I put out two fires shortly before he went into the facility.

‘Huh?’ … becomes dad’s favorite word

Prior to all of that, there were symptoms we all chose to ignore. Dad would ask the same questions over and over. No matter what you’d say to him, the answer was “Huh?” This is because people with FTD lose the ability to understand language.

I took him to get hearing aids, and the audiologist said there was some minor hearing loss. But before that dad’s primary care doctor had told my brother, “It’s not that your dad can’t hear, he doesn’t understand what you’re saying.”

When this all went down, that didn’t make a lot of sense to either of us, which is why I took him to the audiologist anyway. Now it all adds up.

A Time to Forgive, to Forget and to Educate

Before moving in with dad a year before he went into a facility for the second time, I’d check on him several times a day. I’d go in the mornings before work and he would say the meanest, nastiest things to me. He often criticized my work, for which I am proud. It hurt me deeply and for many years.

I would go into the office saying horrible things about him. I had no idea he had a rare disease – I just thought he was a mean person who had become even meaner with old age.

The diagnosis, therefore, was a game-changer. Dad sent my mother over the edge (she ended up divorcing him a second time before dying of breast cancer in 1995).

I went through an initial phase of extreme guilt after his diagnosis.

People who live with FTD find themselves constantly pointing fingers – and having fingers pointed at them.

Instead of pointing fingers, we should find solace in the validation of the diagnosis.

The pain so many of us have endured is in no one’s fault – especially not the patient’s.

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I have been in the news business more than 30 years, spending much of my career at some of the best local newspapers in the country. Today, I report on Denver City Hall, homelessness and other topics for NewsBreak, much like I did in my twenties covering Newport Beach, Calif. for the Daily Pilot. I consider myself a lucky guy to still be doing what I love after so many years.

Denver, CO
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