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.
6 things I’ve learned since my husband died
My year of grieving has taught me so much about life and how to live in gratitude and with forbearance. I’m a better person today than I was a year ago…
After Dementia: What comes next?
Robert died almost one year ago. I have begun to catalog what I’ve learned in the last few years and what telling our story has meant to me and others…
My husband’s funeral unburdened my soul
Long before my husband was admitted to hospice, I purchased a cremation package for each of us. Giving head space to your death feels terribly morbid…
Relinquishing my husband’s body
I had never before seen a person just hours after they had died. I found it unbearable that my husband had left us. He wasn’t supposed to die today.
The day my husband died
My dear, sweet husband, Robert, has passed away. Our story is incomplete, but in this story, I continue the chronological unspooling of our lives…
Catching up to now…again.
Today’s story was originally published on September 4, 2023. The tale of our dear Robert is winding down.
Choosing life, one date at a time
I broke watching my husband decline. I felt I was dying with him. Could a new relationship save me?
Navigating hospice intake for my husband
How do we prepare our minds and bodies for the last six months of our loved one’s life? We can’t.
Letting Go: Part 3 – When it’s time for hospice
My husband’s black vomit from four months ago was back over the weekend. My daughter crystallized our next steps. “Follow Dad’s care plan.”
How dating brought me back to my husband
I had been so frustrated with Robert for so long that I had forgotten what a kind, gentle, man he is. I forgot that I loved him. Let me explain.
Letting Go: Part 2 – It’s time for palliative care
Our most recent visit to the clinic would turn out to be our last. Robert’s care needs haven’t changed, but transporting him to the clinic is challenging…
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…