Caregiver Spotlight: Maria's Story
My husband Mark is a retired firefighter.
Mark was an extreme athlete running 26 marathons, 2 Ultra 100s, triathlons and qualified for Boston Marathon and to this day looks physically fit, it's his brain that is not.
It was an uphill battle getting a diagnosis for this illness. It took us 4 years of constant searching and reaching out to different neurologists for help. We ended up at Stanford finally, and in early 2024 Mark was diagnosed with Lewy Body dementia or LBD, on October 28th of 2024 Mark was again diagnosed with Frontal Temporal Dementia or FTD.
It has been very difficult for us to get any financial support other than applying for grants, which I have done continually.
Today in April of 2026 my beautiful husband is at the beginning of stage 7 which is the final stage, and of course we have no idea how long that will last.
He is sleeping almost all day now and doesn't remember how to use the bathroom sometimes, definitely doesn't know where he is always and is peaceful, content and joyful at home.
He knows his family and friends for the most part.
He has always had strong social skills it is his core and because of this expressive aphasia is more apparent, I guess.
Everything for us has been learning as we go and a willingness for me to be at Mark's side as he takes this journey. Following his prompts and needs.
I am a poet and have written continually and frantically to get my feelings out through this whole unexpected journey. I will enclose two of my latest poems.
Thank you 💔
The Shuttle
It takes you away from me
the physical manifestation of this illness.
it happened before the shuttle arrived
I sob at the loss, as it pulls away.
Letting you go
Little by little,
less and less.
Today you waved once and turned straight ahead.
You went on your way
continuing the routine shuttle to adult care.
Your 2 day a week norm.
No more questions asked
no more not wanting to go.
Me getting you up in the morning.
Putting on your clothes,
while you're still laying in bed.
There is no resistance now,
you do as I say.
Barely awake, during the day
Up to eat and back to bed.
A slow 2-year decline
is really a rapid descent into heaven-land.
Bit by bit,
I let you go.....
into the distance without me....
Me without you, into my future.
The transition is almost complete.
But what do I know........ just losing you.
When caregivers have support, families are stronger. The Del Mar Caregiver Resource Center, a program of Health Projects Center, empowers family caregivers through education, emotional support, respite services, and personalized guidance, helping them navigate the challenges of caregiving with confidence and connection.
