Help Sean and Deva with Cynthia's dementia care

My dear friends Deva and Sean, and Deva's mother Cynthia, are going through some really tough times. Cynthia is a woman of the wilderness who worked educating children as the director of the Matilija Environmental Science Area. Now she suffers from advanced dementia. Her disease progresses unpredictably, and a recent improvement in her health resulted in greater mobility and capacity, which had an unexpected downside. She figured out how to unlock the door and took herself for a walk up the hill at the back of the property. Sean found her clinging to the fence, covered in stickers with various cuts, scrapes, and a severe head wound causing internal bleeding on her brain.

Cynthia has just emerged from neurosurgery. She is recovering well and so far has suffered no loss of function, which is a miracle because subdural hematoma is often deadly. Her daughters Deva and Lila went to bat for her to receive the highest level of care and have been with her in the ICU around the clock for almost a week.

It was Cynthia’s wish to live, and to die, on her land in beautiful Matilija Canyon. Sean and Deva have worked tirelessly over the last year to make this a reality for Cynthia. However, it is clear that she can't live safely on her land without a lot of work to build a safer environment for her. Deva and Sean have been working hard to transform this property into a safe haven and to build Cynthia's long dreamed-of home. They've largely succeeded in this, but as her disease progresses, her environment and level of care must change.

The most pressing current need is for funding and help to finish the last details of her house with an eye towards safety and to create a flat, fenced in yard where she can be outside without having to navigate the many hazards that rural living presents. Sean and Deva must complete these building tasks before Cynthia will be able to come home. They are incurring expenses for supplies and have to hire help to move things forward faster than they can do on their own.

Cynthia in the ICU and the beautiful oak tree on her land.

They desperately need funds and volunteers to get help with critical building projects, including providing safety fencing, finishing the interior of Cynthia’s house, installing an alert system that works in the wilderness in case she escapes again, and baby proofing the house so Cynthia can come home after her short post-surgical stay in a skilled nursing facility. Even before this traumatic event, Sean and Deva really needed someone to provide skilled care for a certain number of hours each week in order for them to have time to rest and to address Deva's own medical challenges. They are working to create a space for one really grounded individual to live on the land with them in exchange for respite care.

What kind of people are Deva and Sean? When the Matilija Canyon road was washed out by a flood in multiple places this January, cutting off the residents from needed care and resources, they hiked many miles out over mudflows and rockslides with a wheelbarrow and hand truck to connect with the mule packing team and hand-deliver needed supplies to their neighbors. When COVID hit, they volunteered to build a community garden and taught people how to grow their own food. They have been dedicated to building community wherever they have lived. Acts of kindness break down boundaries. I am thankful for their mindset in my life.

If you are able to make a donation, it would help them to provide a high level of care for Cynthia as she recovers from this serious head injury, and to quickly complete construction so that Cynthia can come home safely and their family can be reunited. It will help them to hire skilled nursing and to create a space for a live-in caregiver who can provide them with long term respite hours each week. It would also make a huge difference for Deva's health to be able to get medical care, including tests and treatments. Deva is dealing with some ominous symptoms, and is looking at a possible cancer diagnosis while coping with a backlog of medical debt. Deva suffers from mast cell activation syndrome (MCAS) and has been in and out of the hospital with severe complications over the last year and a half.

Cynthia and Deva

I should also mention that Deva is an incredibly talented writer who has been studying to be a nurse practitioner. She's had to delay her writing and studies due to this situation and her own medical struggles with MCAS, which is exacerbated by stress (and you can only imagine the type of stress she is under). We are all really hoping that her upcoming scans come back cancer free and that she is able to return to full health.

It pains me to see such kind and heartful people facing ongoing trauma, which has pushed them to every limit. They deserve better, we all do, and my theory is that if we can help people like Sean and Deva we are actually helping ourselves to heal what is really a pitifully broken system and to create connection and support instead of isolation and numbness. I hope that you can give something towards the considerable needs associated with Cynthia's Alzheimer's, and we thank you from the bottom of our hearts for both your contribution and your care.

with love,

Francesca