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Read our stories from the beginning

The stories below chronicle our family’s journey with frontotemporal dementia starting from the beginning with our first story. Robert, our husband, father, and friend, began to leave us in 2015. Throughout our odyssey, Robert has been Here in body and Not Here in mind.

Our Journey: Part 1 – Where we started

My husband, Robert, was diagnosed with Frontotemporal Dementia ( FTD ) in 2017. Most people think of Alzheimer’s disease when they hear the “D” word. But dementia is an umbrella…

Our Journey: Part 2 – Signs of trouble

We first noticed Robert’s judgment falter in 2015 during a trip to Europe with our then-15-year-old son, Jackson. My husband has always had a great sense of direction. He could…

Before Dementia: Part 1 – The man I met

We met at a Thanksgiving dinner in 1982. Robert was taking a creative writing class at UT-Austin and his professor, David, was fond of his wild, stream-of-consciousness prose that could…

What FTD Looks Like: Part 1 – Apathy sets in

Robert struck a jaunty pose, right leg out in front of the left, body leaning in, his right index finger casually hooked forward, ready to point as he gathered to…

Slow Moving Diagnosis: Part 1 – Consult with primary care

Dr. Green was quick to smile, his easy grin squatting on his wide, fleshy face. “What brings you in today?”

I looked at the unevenly posted flyers on the wall,…

Before Dementia: Part 2 – Our daughter starts school

Every schoolday Robert took our daughter, Madison (Maddie), to Kindergarten on the back of his bike on his way to work. He’d don a reflective vest, they’d helmet up, and…

Slow Moving Diagnosis: Part 2 – Consult with neurology

We scheduled an MRI in preparation for Robert’s Neurology consult. While there is no cure for most neurodegenerative diseases, knowing what type of disease your loved one has can help…

Before Dementia: Part 3 – Magic and Leprechauns

Tracy, the Leprechaun, visited us every year on March 17. He left yellowed notes on tiny scraps of paper each year, handwritten in a left-handed cursive that was difficult to…

What FTD Looks Like: Part 2 – Candy and disinhibition

I shared Robert’s encroaching apathy in my first story about his symptoms . Soon after he was diagnosed with bvFTD , Robert began operating without thought to the implications or…

Slow Moving Diagnosis: Part 3 – Consult with neuropsychology

Neuropsychologist Dr. Sophia Tai worked out of a spacious room, more like a lounge than a clinical setting. Furnished with a sage green couch and comfortable armchairs, the room was…

Before Dementia: Part 3 – His father’s boy

Our son, Jackson, was a little wonder. We’d given up hope that we’d have a second child and had let the years accumulate without pining too much for the wished-for…

Slow Moving Diagnosis: Part 4 – Arriving at dementia

Robert sat on the edge of the bed and stared out the front window, underwear in hand, clothed only from the waist up. His head bobbed up and down as…

What FTD Looks Like: Part 3 – Counting and mimicking

The overworked, frazzled mother in line behind us at the market, wiped the damp curls from her temple, grabbed her son by the arm and knelt down to speak directly…

Caregiver Fatigue: Part 1 – Respite care

Robert got stuck in the bathtub. He managed to orient his body sideways, his right leg stretched out, his left braced in a triangle with his body propped up on…

Behavioral Challenges: Sharing the word of God, part 1

I worked hybrid before it was a thing. 

Some days I had to be on the phone with colleagues in India at 6 am. On those days, I worked the…

Behavioral Challenges: Sharing the word of God, part 2

This story is continued from Sharing the word of God, part 1 .

We live near a high school. Adults are not allowed on campus unless they have some business…

Behavioral Challenges: Sharing the word of God, part 3

This story is continued from Sharing the word of God, part 2 .

The threat of Robert’s arrest constricted my days in a belt of anxiety. And at night, I…

Dr. Canio and the POLST

The Geriatrics and Life Stages department was tucked at the back of the clinic, down a long, grey corridor. After struggling for 25 minutes to get Robert out of the…

I Need Help Now!, part 1

I had just logged onto a Skype call to meet with my team in India, barely professional from the waist up, when Robert started groaning on the floor next to…

Word of Mouth: How I found a caregiver for my husband

I began my search for a caregiver for Robert in earnest after the harrowing day described in my story I Need Help Now! Looking at myself from the perspective of…

Finding Jace: A caregiver and a friend

In my last story , I talked about finding a caregiver for Robert. Today I’ll introduce you to the caregiver I found.

Jace is a large, ebullient man. He stands…

The day I decided to quit my job

The morning started like any other. I’d prepared Robert’s breakfast and had laid out his clothes for the day. He was comfortably sitting in our front office contemplating getting dressed….

Good luck quitting your job

I ducked into the unused rental unit behind our house to phone my boss to quit my job. The day before , I’d reached the conclusion that this was my…

Don’t quit. Take leave under FMLA.

It was early January 2021. The first COVID-19 vaccine had been approved by the FDA, but it was not yet widely available. Non-essential workers like me were still plodding away…

So you think you can be a caregiver?

I rolled over, checked the time on my phone, and sat up in bed. It was 6:15. As much as I wanted to sleep in, I was anchored in my…

What if you are not caregiver material?

In the early days of caring for Robert full-time, my days unfurled in yawning monotony. Dreary, relentless, and unchanging, repetitive tasks crowded my waking hours . I found no mental…

What is my obligation to my husband?

Was I obligated to give up my life for Robert’s? This was the question I asked in my last story . This was the moral dilemma at the center of…

The stunning cost of memory care

I looked across the slick expanse of the long, polished conference table. I was waiting for the executive director of the Daylight Assisted Living and Memory Care facility. The room…

Could I move my husband to memory care?

My sister, Elizabeth, arrived on the shuttle bus from San Francisco Airport (SFO) in early February. Her trip from Wisconsin had been planned as a “sister holiday,” a kind of…

Selecting a care home for my husband

I realize this story is a bit out of order relative to my previous posts about the unreal cost of memory care here . Still, I wanted to revisit the…

Moving out of our family home: Part 1

I do well when I’m charged with a project that has a natural endpoint, a collection of discrete tasks to check off my list. When the list is done, the…

Moving out of our family home: Part 2

This story is a continuation of ” Moving out of the family home: Part 1.

The day dawned overcast and humid, a chilly 52 degrees. Our usual marine layer…

Moving out of our family home: Part 3

This story is a continuation of “ Moving out of our family home: Part 2 .”

The fog lifted during my short drive across town to Maddie and Trent’s place….

When I found myself alone

I collapsed on the double bed that was no longer ours but mine alone. Dust motes drifted up from the floor as they do when a long undisturbed space is…

A funny from dementia’s front lines

Over the past several months, I’ve shared stories about our family’s journey with my husband’s dementia. Many have been sad, because dementia, like any terminal illness, is sad. Robert’s life…

This is not such a great day

Most days

Most of my days are felted
in a soft, pliable grief.

I mold it to a sturdy understory.
It holds me up.

Some days my grief
is a…

Yes, I am okay despite these feelings

In last week’s story , I recounted a very difficult day, one in which I was overcome with anticipatory grief . Since then, many of you, friends and neighbors alike,…

Reflections on being human: Part 1

Do we still matter if our capacity to solve problems and be creative has disappeared?

What does it mean to be human when we lose our minds? 

I think about…

A bottom-feeding, for-profit business

If you saw me rifling through the massive stack of papers on the slick, walnut table in the conference room at Daylight Senior Living and Memory Care, you might think…

When my world was blown apart

My world was blown apart when I moved Robert to Daylight Senior Living and Memory Care . This final breach threw my world into chaos. Robert had walked beside me…

The genetics of FTD. Do you want to know?

When Robert was first diagnosed with frontotemporal dementia (FTD) in 2017, I did what most people do when faced with a shocking, terminal diagnosis. I jumped into research to try…

When I decided I had to retire

I decided to retire two months after I placed Robert at Daylight Senior Living and Memory Care, although saying “I decided” might be imbuing my choice with too much rationale….

Sort of alone in Alaska

When I placed Robert in a care home and retired , I found myself unmoored. I wondered what I was supposed to do next and more fundamentally, I wondered who…

An experiment vacationing solo

The year after my trip to Alaska sped by. I continued therapy, working through the torrent of emotions, thwarted life plans, and questions of my own identity that surfaced as…

Reflections on being human: Part 2

Do we matter when we lose our minds? 

I touched on this question in part 1 of this series but didn’t answer it for myself. Instead, I focused on observed…

I don’t want to be alone. Now what?

Dementia is a vicious disease. Robert’s decline is irreversible. All outcomes are terminal. He may linger for years, imprisoned by his illness. This is now the backdrop to my marriage….

Putting myself out there

I understood why my daughter staged an intervention. Maddie encouraged me to start dating even though her father, my husband, was living in a memory care facility. She came to…

Diddling around the edges of online dating

I folded myself into the cradle of my gray-blue recliner with my laptop resting on a pillow on my thighs. I developed a ritual. Open the curtains, open the shades,…

This isn’t actually a date, is it?

Will kept turning up.

After our first meeting for breakfast , we made plans to attend a local, outdoor music festival. The festival was free and didn’t require a tremendous…

When my husband’s care home took a header

Our son, Jackson, was visiting from Chicago when I began to see that resident care at Daylight Senior Living and Memory Care was declining. Sometimes we must experience a situation…

Searching for a better home for my husband

Jackson flew back to Chicago after a five-day trip home. Robert didn’t understand why his son wasn’t around anymore. I visited Robert at Daylight Senior Living and Memory Care every…

Finally, a better home for my husband

By the time I toured Gardenia Place, I had already explored two board and care homes that wouldn’t work for Robert. Skeptical of finding a memory care placement that wouldn’t…

Away from your family to take care of mine

I am struck by the muted light when I visit Robert at Gardenia Place. The sheers hanging in the bay windows in the front room are a sage green, fading…

Joy again? Life is sneaky like that.

Will and I started seeing each other 18 months after I placed my husband, Robert, in a memory care facility . I was lonely after years of declining companionship and…

Letting Go: Part 1 – Black vomit

Overnight Robert threw up black vomit at 3 am and 5 am. I learned about this when I arrived to visit him today. Elysia said they were just about to…

How to cut an onion without crying

Since we started dating , Will and I had gone out to eat more times than was good for either our budgets or our waistlines, so one day in late…