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All our stories

The stories below chronicle our family’s journey with frontotemporal dementia. 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.

Read our stories from the beginning here.

How to cut an onion without crying

And other lessons on how to be flexible in a new relationship.

Letting Go: Part 1 – Black vomit

Overnight Robert threw up black vomit at 3am and 5am. Black vomit equals blood. I felt my stomach drop and willed myself to deal with what was in front of…

Joy again? Life is sneaky like that.

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

Away from your family to take care of mine

Gardenia Place is a board and care home with generous, private residents’ bedrooms. The four women who work at Gardenia Place also live at Gardenia Place…

Finally, a better home for my husband

Skeptical of finding a memory care placement that wouldn’t break my heart or my wallet, I was dispirited by the time I toured Gardenia Place…

Searching for a better home for my husband

During Jackson’s visit home, I realized, with some panic, that my husband, Robert, needed to be moved to a new memory care facility…

When my husband’s care home took a header

Sometimes we must experience a situation from an outsider’s perspective to truly see it. Walking into Robert’s room with Jackson, I saw Robert’s environment…

This isn’t actually a date, is it?

The prospect of dancing in public unnerved me. My sweet Robert and I hadn’t danced in years. The last time we’d taken a spin around the floor was at Maddie’s…

Diddling around the edges of online dating

For months after posting my dating profile, I picked through online profiles of potential companions without ever “liking” one. I felt a swell of anxiety…

Putting myself out there

My daughter encouraged me to start dating when her father, my husband, was in memory care. This is how I started to present myself to the world…

I don’t want to be alone. Now what?

In many ways, spouses are as imprisoned as their loved ones with dementia. What if a full life means being in a loving, reciprocal, committed partnership…

Reflections on being human: Part 2

In writing about my journey with my husband’s dementia I’ve had to abstract ideas before I can write about them. I’ve continued to ponder the bigger…

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…

Sort of alone in Alaska

I decided to go to Alaska. I wasn’t trying to check destinations off a menu, I was trying to learn what being alone with my experiences might be like…

When I decided I had to retire

When I saw “I decided” to retire that might be imbuing my choice with too much rationale. The upheaval of the past few years had caught up with me…

The genetics of FTD. Do you want to know?

When your loved one is diagnosed with a shocking, terminal illness do you really want to know if there is a genetic link? The implications for your kids…

When my world was blown apart

My world was blown apart when I moved Robert to Daylight Memory Care. He had been a physical presence in my day-to-day life for over 42 years and now he was…

A bottom-feeding, for-profit business

Now that I’ve got your attention, let me share some truths about the business of elder care that will curl your toenails and curdle your stomach…

Reflections on being human: Part 1

Do we still matter if our capacity to solve problems and create gone? What does it mean to be human when we lose our minds? I think about these…

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. Many of you have reached out to make sure I am…

This is not such a great day

Anticipatory grief is not the miasma of unrelenting, clinical depression that can be triaged and resolved with a 10-minute psychiatric check-in and,,,

A funny from dementia’s front lines

Many of my stories have been sad, because dementia is sad. But occasionally, funny things happen that elevate my experience to comic levels and bring a smile…

When I found myself alone

I collapsed on the double bed that was no longer ours, but mine alone. I’d just completed Robert’s move to Daylight Assisted Living and Memory Care…

Moving out of our family home: Part 3

I parked, unbuckled Robert’s seat belt, and ever so gently, I turned his body and pulled his legs out of the car readying to lift him to his feet and…

Moving out of our family home: Part 2

The day dawned overcast and humid, a chilly 52 degrees.This was the day we would move Robert to Daylight Assisted Living and Memory Care…

Moving out of our family home: Part 1

I do well when I’m charged with a project that has a natural end point. Preparing to move Robert to Daylight was gut-wrenching, but with a list I could turn it…

Selecting a care home for my husband

My sister and I readied ourselves to tour the two memory care homes she’d made appointments with. I labored over what to wear. Seriously? Yes, I did…

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 holiday…

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…

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 dilemna at the center of my ruminations…