We have been to doctor after doctor over the last 8 or so years, trying to figure out what is wrong with my mom and how to manage it. From the early days when psychiatrists told us it was bipolar disorder or delusional disorder, to the period where we were told it was mania and other associated disorders, to her diagnosis of dementia and finally early onset Alzheimer’s. If I’ve learned anything in this, it is that psychiatric disorders and diseases of the brain are hard to diagnose, hard to treat, and hard to live with.

We have a neurologist that I really like and trust these days. She’s smart, she’s matter of fact (even when it isn’t good news to have to hear), and she really seems to want to know and care for my mom. What more can you want, right? And she has a new diagnosis for us now, Frontotemporal Dementia. And when I came home and started to do my research on the web about it, reading the list of symptoms was like reading our history over the last decade. It was the first time I’ve felt like we really had a diagnosis that fit. And there’s no cure, there’s no test for it and no way to definitively diagnosis it while she’s alive. But it feels like the right thing. And that’s a lot of what you go on–what feels right. A lot of what you learn to live with in this is the ability to live with uncertainty and make the best decisions you can without ever knowing the right answer. You just move on what feels “righter” than wrong. And this feels the “rightest” of anything we’ve heard before. It doesn’t change what we do or how we love and care for mom, I know. But still it is a HUGE relief to feel like you finally know what’s wrong…even if there is nothing more you can do about it.

Symptoms of Frontotemporal Dementia

Behavioral changes:

Can’t keep a job

Compulsive behaviors

Inappropriate behavior

Inability to function or interact in social or personal situations

Problems with personal hygiene

Repetitive behavior

Withdrawal from social interaction

Emotional changes:

Abrupt mood changes

Decreased interest in daily living activities

Failure to recognize changes in behavior

Failure to show emotional warmth, concern, empathy, sympathy

Inappropriate mood

Not caring about events or environment

Language changes:

Can’t speak (mutism)

Decreased ability to read or write

Difficulty finding a word

Difficulty speaking or understanding speech (aphasia)

Repeat anything spoken to them (echolalia)

Shrinking vocabulary

Weak, uncoordinated speech sounds

Neurological problems:

Increased muscle tone (rigidity)

Memory loss that gets worse

Movement/coordination difficulties (apraxia)

Weakness

Other problems:

Urinary incontinence