Lydia’s Misadventure Today

Today, Lydia went missing from the secured facility that she’s been in since her last hospitalization around Easter of this year. When I got the call from the facility, my heart sank to the floor. I had reached out to Nancy’s husband ( in October after reading about her wandering off, saying “stupid” like Lydia says, and seeing the LA Times full-page ad they had run on a Satruday. I had told him to check the psychiatric wards in the area, because although Lydia has FTD (Frontotemporal Degeneration) and was diagnosed in 2014 by the current Chair of ‘s Medical Advisory Council,
A) most doctors don’t know what FTD is, and
B) they misdiagnose it as schizophrenia, bipolar disorder, depression, Alzheimer’s, or they think the patient is on drugs or alcohol.

I had gotten a few photos of a potential “Nancy” texted to me at the beginning of December, and because Lydia and Nancy are the same age, I have a background worry about Nancy.

I’m sure you can imagine the shock I had when I got the phone call this AM. I called and asked Nancy’s husband if he had any advice because Lydia had slipped out of the facility at 7 AM and it was 9 AM–who knows how much ground she could have covered in that time–other than the seizures, aphasia and FTD, Lydia was in pretty good health and walked all day in the facility. Kirk told me to get the LA Sheriff and search dogs involved right away and get the businesses in the area with cameras not to delete their videos. I got our mom, Lydia’s medical records, and all the photos of Lydia’s clothes we’ve dropped off to the facility to aid in the description for the police and any volunteers and started driving from Ventura County.

In the car, we called 911 and were connected with the Malibu Sheriff station which then sent me over to the North Hollywood station. The facility staff was there, and one of the officers said they thought they may have found Lydia. The nearby Burbank Police had taken her to the hospital. The facility staff texted the address of the hospital, and we met them there with other members of the staff. Once we got there and told the ER doctor she had FTD, they canceled some of the tests they were thinking of running, but she hadn’t eaten yet or had her AM meds. They tested for a UTI, but she had just finished taking antibiotics for the only one she’s had at this facility. Her anti-seizure meds were in the correct range.

The ER doctor and staff were fantastic EVEN THOUGH THEY’D NEVER HEARD OF FTD, but if we weren’t involved, she would have been in the psychiatric ward of the hospital, which is where she was initially placed. On a happy note, she was transferred back to the facility, and we are all breathing sighs of relief.

Lessons learned:
1. It only takes a second for a confused person to get lost.
2. The Police can be very helpful and the hospitals are trying to do the best they can with limited information from a patient who can’t advocate for herself.
3. Ambulatory dementia patients are often misdiagnosed as psychiatric patients.
4. Lydia was found near a dog park from what we’ve been able to gather. She likes animals and as best we can tell, was saying the name of her beloved cat, repeatedly.
5. When dehydrated, dementia patients are even more confused. They may not be able to let you know they are hot, cold, thirsty, their feet hurt, are wet, need to go to the bathroom, etc. and may become agitated and lash out because we don’t understand them and they are angry because we aren’t helping they get what they need.
6. Volunteering efforts like what the people of are doing are amazing and help even when they might not think they are. You are all making a difference!

I’m amazed by all the smart things they are doing and hope Nancy can be returned safely home like Lydia was to her skilled nursing facility.