Heres her story, as told to health writer Julia Ries.
Lee and I started dating in early 2013.
The relationship took off, and we got engaged in 2014.
Kristin Holloway
Lee struggled withmigrainefor a long time.
In June of 2015, we flew to Hawaii and got married.
It was a beautiful wedding, and we had an amazing honeymoon.
Afterward, we returned home to San Francisco.
Everything seemed good and normal, and in January of 2016 I found out I was pregnant.
In May, a little over a year after his surgery, things changed.
Lee started regularly missing work and going in very latemore than he ever did in the past.
He was given a performance improvement plan, which was shocking.
This was his company, he was one of the founders….
It didnt make sense.
This was odd: Hed always taken pride in his appearance.
I didnt know what to do.
I was six months pregnant and about to go on maternity leave.
Lee was clearly struggling, so I suggested he take time off of work to rest.
I thought that, maybe, he was still recovering from the surgery and possibly dealing withtraumafrom it.
Eventually, he agreedand in July 2016, he stepped down from the tech company.
He was increasingly apathetic and didnt seem as engaged in life.
He just didnt care as much about things he cared about in the past.
When he stopped working, his behavior sharply declined.
He didnt change out of his pajamas and spent a lot of time on the couch.
He watched the same movies and TV shows on repeat.
By September, he watchedHome Aloneabout 10 times a week.
He showed no motivation or desire to be productive.
That wasnt normal behavior for anyone, let alone my brilliant, amazing husband.
I started maternity leave in September, meaning I was home and around Lee a lot.
Meanwhile, his apathy got worse and worse.
He obsessively talked about how he survived his heart surgery and needed to rest.
He became hyperfocused on it.
Again, I thought something psychological was going on that was affecting his recovery.
A week after my due date, we went to the hospital to have our baby.
Lee slept through my entire labor and delivery.
It was very unlike him to be that combative.
We had our sonwho was happy and healthyand went home.
My mom came and stayed with us for three weeks.
Theapathyand obsessive tendencies intensified that fallhe now touched every corner of the countertop and refused to shower.
He became very nostalgic for people, places, and things from his childhood.
Hed watch the same scene from movies over and over.
I woke up to a new version of my husband every single day, and I was terrified.
I worried it was a marriage issuemaybe this wasnt the life he wanted.
During the first appointment I cried and he had a blank look on his face.
The therapist asked Lee how he felt about my emotions and, again, he said hed get better.
I kept thinking, Something is very wrong.
The therapist told me Lees level of apathy was abnormal and recommended he see a psychiatrist.
Mind you, our baby was only a few months old.
I was in complete survival mode.
My husband was 35.
Nobody had a clear-cut answer.
I was devastated, and I felt like no one was listening to me.
But the brain is complicated, and these were complicated symptoms in an otherwise young, healthy man.
The psychiatrist told me I was in for a long, tough road.
I was like, Well, what does that mean?
and he told me it was possible Lee had a rare form of early-onset dementia.
I didnt even respond.
I was thinking, Dementia?
This is the disease older people get when they start forgetting things.
That was the last thing I ever expected a doctor to say he hadI couldnt believe it.
Lee, meanwhile, was totally unaware of what this meant.
He said he was still recovering from heart surgery and would get better.
I thought maybe he was in denial.
I went back to work in February 2017.
We didnt have a diagnosis, but the baby was well-cared for and Lee could be by himself.
He got anMRIof his head and we met with a neurologist to review the results in March.
My whole world ended.
Up until this point, I still had hope he had a severe yet treatable psychological disorder.
But I knew this was confirmation he had a neurodegenerative disease.
It was the worst-case scenario.
I called my boss, explained what the scans revealed, and gave my two-week notice.
My husband was not going to get better.
Every moment would be the last time Id be with a healthy version of him.
I booked an appointment at the memory and aging clinic at UCSF.
We still hoped there was something we could do to help Lee improve.
The best thing we could do was take Lee home and ensure he had a good quality of life.
I felt so much grief, but Lee wasnt even registering the severity of this diagnosis.
For the next year, I was his caregiver.
My parents visited and helped out a lot, and Lee would occasionally go stay with his parents.
Hed also leave the baby gate open, which put our son at risk of falling down the stairs.
The situation wasnt safe, and soon it became untenable.
I had to go back to workwe didnt have the resources for me not to.
Lee is now 43.
For the past two years, hes lived in a facility where he gets around-the-clock care.
Hes still physically active, but nonverbal.
When my son started talking, Lee stopped.
Nothing about our life will ever be normal again, but I want it to be happy.
I needed to have space from the situation and reclaim my life.
Dont get me wrong, I am very involved in Lees care and his doctor visits.
We see him very frequentlyabout once a monthand thats whats appropriate for us.
In 2020, I reached out to The Association for Frontotemporal Degeneration (AFTD) and joined the board.
There was no hope of recovery for Lee.
This was my way of turning the pain into purpose.
In the face of what was a very hopeless, dark journey, joining AFTD has been incredibly rewarding.
I processed a tremendous amount of shame and grief about this.
But I did what I did to save myself.
I did it to save my son.
I wouldnt change anything I did.
I wanted to carve out a life for myself independent from my husband and his diagnosis.
It goes back to that saying: You have to put your mask on first.
