Why FTD is so hard to talk about – my dad’s story

 

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Originally published Jan. 5, 2015 on Healthline Contributors. Reprinted with permission. This piece had more than 20,000 page views on Healthline Contributors as of Nov. 1, 2016. My dad died in September 2015.

My dad has a lot of difficulty getting the words out. I’m having a problem getting the words out, too.

A neurologist diagnosed my dad with frontotemporal dementia, also known as FTD, or Pick’s disease, a year ago. Shortly after that he was placed on hospice care in the memory care community, where he already had been living since July 2013.

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.

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

I’ll give you an example: I went to see Dad the other day, and the hospice worker was down in my father’s apartment preparing him to go upstairs to the great room. So I went upstairs and waited so they could do their thing. I know this is not an easy daily task for them. If I’m there, dad screams, shakes his fist, etc. Honestly, sometimes I’m amazed how they do it. And so grateful.

Soon the elevator doors opened, and the hospice worker wheeled out Dad. He had this extremely strange look on his face (see photo with story). I asked him what was wrong, but he would not respond. This happens a lot with people with FTD. Sometimes they don’t speak. 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.

So for 25 minutes I sat with him in the dining room. He had this sullen look on his face and would not speak at all. I was very upset. Finally, 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.

I, on the other hand, am having a tough time spitting out the words, because 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. By the time things get really bad, or to a crisis situation, the hurt can explode due to a lack of understanding about the disease. Like throwing onion rings into the fryer.

 What is FTD?

Here’s a little bit of background about FTD that you can find right here at Healthline.com. A link to this information is below.

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 very much developed over time, and only now do all of the pieces fit into something that has puzzled all of us for many years.

There isn’t a 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 with symptoms sort of similar to what’s going on now. At that time I moved back to the Quad-Cities from Los Angeles, and he was taken out of the facility and rebounded. He did much, much better for several years before beginning to go downhill again in 2006 or 2007.

My dad doesn’t have Alzheimer’s disease, but that was what doctors initially thought. Even now when people ask if he has AD I sometimes just go along with it and say “yes” because I don’t want to bother explaining FTD. But those of us going through this must explain it.

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. So 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. Again, like a stinky onion.

With FTD, there’s not a lot of stigma because it’s not something you hear about a whole lot. 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 truly more than one person can handle, I firmly believe.

In my FTD support group, I’ve heard a few stories of spouses who get divorced and then remarry. This struck me because my parents did the same thing. In a recent 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. Today he is 76.

I’ll spare my family the embarrassment of sharing the details, but we had lots of fighting in our house through the years. Even the kind where the police are called. I hear 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.

Tick-Tock: My Dad’s FTD Timeline

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 has been incontinent nearly two years and now is unable to walk or even stand without help. He still speaks, but it’s starting to be less and less. Some days he can feed himself pretty well; other days he has a lot of difficulty.

I already had written the first paragraph of this column – about dad not being able to get the words out – when on Friday he blurted out, “I can’t make the words anymore!” after stuttering a long time while trying to tell me something he obviously thought was important.

During the past couple of years dad’s FTD has progressed to that. It began with a sharp downturn that began a few years ago. Among the things that were happening:

*  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 repeatedly 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, and eventually down into the basement where I slept.

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

Prior to all of that, there were symptoms I and everyone else apparently chose to ignore. He 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 even 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 two years ago, 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 the facility, 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 imaginable. He often criticized my work, for which I am very 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. I’m sure he did send my mother over the edge (she ended up divorcing him a second time before dying of breast cancer in 1995). And I went through an initial phase of extreme guilt after his diagnosis. I frequently screamed right back at him when he would treat me so poorly.

And there’s so much more to this story that I’m just going to leave out. He’s been through enough. We’ve all been through enough.

People who live with FTD find themselves constantly pointing fingers – and having fingers pointed at them. Instead of pointing fingers, maybe we all should at least find solace in the validation of the diagnosis. The pain so many of us have endured is in fact no one’s fault – above all, not the patient’s.

Read my Healthline News story on the NIH funneling dollars toward FTD research by clicking here.

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