Chapter 5: Dad diagnosed with rare “terse and curse” called FTD, behavioral variant

Six months into dad’s stay at the memory care facility, my brother and I both wanted an accurate diagnosis of what was going on with him.

He seldom made any sense when he spoke. When he did, “I can’t believe he said that” insults were par for the course.

At times, he clocked workers (at least they said he did…he often claimed getting clocked as well). He had been completely incontinent for six months (since the day he went into the hospital) and wearing pull-ups.

Regardless of what was wrong with dad, to me it didn’t matter. But my brother was hell-bent on disproving the hospital’s Alzheimer’s diagnosis.

It seemed to me at the time that if my brother thought he could prove dad did not have Alzheimer’s, he could remove him from the memory care facility and move him back in with me.

David Heitz on LinkedIn: How my dying father breathed new life into my career

He didn’t put dad in the memory care facility because he wanted to. He didn’t have a choice, according to an administrator who worked at the nursing home where dad had been two months prior. She claimed she threatened my brother with turning him into the elder ombudsman if he brought dad home to me. I absolutely believe her because there’s no way my brother would have put dad into the memory care community otherwise.

Ironically, I chose the memory care facility that ended up trespassing me. But it had changed hands by the time that happened.

Administrator at ‘John Deere hospital’ proves golden

The administrator of the dementia unit at the CMS-certified nursing home where dad stayed for two months prior to the memory care facility ran things like a dedicated, no-nonsense medical professional. She was following the letter of the law.

I readily admit I was not capable of single-handedly caring for dad any longer. For the record, I have no doubt my brother did come to understand that later.

Dad on many occasions would ask to go to back to “John Deere hospital” which for whatever reason is how he referred to this nursing home. Dad was a Deere retiree.

Thank God for laws, by the way, regulating elder care. While the strictest federal laws only apply to facilities receiving federal Medicare/Medicaid dollars, other laws very state by state.

Most aren’t enforced, for a variety of reasons that I list in another chapter. But, if you learn what the laws are in your state, you can at least advocate on your loved one’s behalf.

And I did. Had I not, I never would have seen my dad again, as explained in another chapter. Advocating got me “trespassed” from dad’s facility, and advocating got me reunited with him again.

Although I’m the one who moved back from Los Angeles after dad had moved into a long-term care facility the first time (then moved back into his apartment, which he had kept, upon my return), ultimately quit my job, and even moved in with dad, as the youngest child I was not power of attorney.

That would have been fine if my brother and I would have been able to work together. But this is less about hindsight being 20/20, and more about informing others so they don’t have to live through the hell my brother and I did.

At any rate, after six months, at a cost of just under $4,000 per month for the memory care institution, every penny coming out of dad’s pocket, the fighting between my brother and I had reached epic proportions. Or so I thought.

In reality, we still were just engaging in warm-up verbal sparring at that point. Soon, it would become one Main Event after another for the next few years.

This is not at all uncommon for siblings of a parent with dementia. Add that my brother and I both are never married, no children, and had lost our mother 20 years prior, and neither of us with anyone to lean on.

It just made everything worse. We’re both loners. I never used to be, but between trying to live an alcohol-free life and caring for dad, I have found true serenity in just being alone with my thoughts most of the time.

Read more: My report on how a binding caregiver contract can keep siblings out of court

Neurologist warned dad’s behavior will worsen

I made an appointment with a neurologist to try to find out what was going on inside dad’s brain. I had no idea what the neurologist was going to say, but I wanted to make sure I had witnesses.

I corralled my cousin and the activities director of the memory care facility to also attend dad’s appointment with the neurologist. My brother had to work.

The day we took dad to the neurologist, he initially was very quiet. He wasn’t really acting up at all, but he did say several nonsensical things. The doctor asked him a few basic questions about current events. Dad answered a few things correctly, but mostly he was acting a clown.

Read more: My dad, class clown of his memory care community

“Frontal lobe!” the doctor exclaimed.

“Frontal lobe? OK, so that’s the next most common form of dementia in elderly people next to Alzheimer’s, right?”

As much as I wanted to think I was the health reporter who knew everything, I didn’t.

“No! Frontal lobe, very rare,” the doctor continued. “Behavioral variant.”

Read more: Why FTD is so hard to talk about: My dad’s story

Then he added, “Take him three doors down to (a psychiatrist) for medication. If you do not, his behavior is going to get so out of control the facility will throw him out. No one will take him. Then he will have to go to Galesburg.”

Galesburg, Ill. is about 40 minutes or so south of the Quad-Cities. Not someplace you could take the city bus to, which is how I was visiting dad at the time. There is a place there that takes elder people with dementia who have become hostile. They medicate the hell out of them (which should only be done when absolutely necessary) and then get them placed somewhere.

At least that’s how it was explained to me.

Sadly, the neurologist turned out to be right about everything both in terms of dad’s diagnosis and the progression of his disease. Although I wasn’t really surprised.

In long-term care circles, some refer to dad’s rare disease – only 50,000 people in the U.S. are estimated to have it – as “terse and curse.”

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Actually, the neurologist gave dad a secondary diagnosis of Parkinson’s Disease, which I really never have much written about. Dad at the time, and for a certain phase of his illness, had the classic “Parkinson’s shuffle” and many of the classic dementia, behavioral and mobility problems that comes with it.

But in the end, the progression of dad’s disease was classic BvFTD.

Dad’s own private WMD: A cement bulldog

When we went to see the psychiatrist just a short time later, dad already had begun to have violent explosions. He would pull the blinds down inside his room: Literally right out of the wall, rod, plaster and all. He did that many, many times.

He also had discovered a weapon of mass destruction: A cement bulldog. (You can see the bulldog by clicking on this link here. The story has nothing to do with my dad but I used the bulldog as a prop for the photo.)

Dad would take the bulldog and crash it against the porcelain toilet in his room, releasing floodwaters that would ravage the lower level of the memory care community.

At least I suspect that’s what he did, as the bulldog is now damaged, and I know at one point they took it away from him. But for all I know, he had a lady friend who got mad at him and did it. There was one resident who got into bed with dad once and he allegedly hit her. He was written up for it. I had them rewrite the report because it did not state the other resident got into bed with him, which an employee confirmed.

It took another six months after dad’s diagnosis for me to fully research dad’s disease. By the time I had read up on it, I was analyzing his symptoms after every visit and trying to figure out how much time he had life. It was brutal.

It also was already close to the end. No, dad didn’t have Alzheimer’s. If he did, he would have lingered with the lights off for at least 10 more years most likely.

Actually, the lights never were off for dad. He knew every horrible thing that was happening to him until his last breaths. The part of the brain that controls vocalization had stopped working the last few days of his life. Instead, there were silent screams and convulsions that no child of any age should have to watch their parent go through.

Dad lobs nasty insults at psychiatrist

“Hey doc!” screamed dad as we wheeled him into the psychiatrist’s office.

Dad immediately hurled an ethnic slur.

“Seroquel immediately to sedate him!” the doctor snapped.

Dad then hurled another ethnic slur.

“I’m doubling the dose!” responded the doctor, rewriting the script like a mad scientist.

And dad that was pretty much it.

Getting dad into the doctor’s office was pure hell. People with dementia can put their feet flat on the floor when they are in a wheelchair and refuse to let you take them anywhere.

On the way out, he was screaming, hunched over, fighting all of us. A young father with gigantic blue eyes gazed at me and offered help. His little girl clearly had troubles of her own.

I was profoundly impacted by this man’s gaze, and I never will forget it. It was as though he immediately saw another person caring for a loved one who so badly needed help. Someone who has cared for another person and faced the challenges that come with it knows when they see another person who is struggling with that 10,000-pound responsibility.

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