Care partner finds support through poetry and people

By: Anjali Sadarangani

After Mark Treuge was diagnosed with dementia with Lewy bodies (DLB), his wife, Maria, took a proactive approach to handling his care. In addition to lifestyle interventions and clinical trial involvement, they were connected to a support group through the Alzheimer’s Association®. To her surprise, Maria reconnected to her love of poetry and has found a kind of solace through it.

Before the diagnosis

Mark was a firefighter, but after sustaining an injury, he changed careers and became a plan checker for Santa Cruz County and a business owner. For six years, in his business, Mark and his partner were able to coordinate building projects for customers in Santa Cruz. He also worked in fire plan checking in Salinas for three years until he retired. After retirement, he worked at a local care setting as bus driver giving scenic tours and casino runs.  

Outside of work, he was an avid runner, running a total of 26 marathons, two ultramarathons and qualified for a 100 mile ultramarathon. Six years ago, Maria and Mark finished the Camino de Santiago, a 500-mile pilgrimage in Spain. However, after returning, Maria started to notice some changes in Mark.

The warning signs

Aside from forgetfulness, aspects of Mark’s communication style changed. Though marriage counseling helped, it was Mark’s post-traumatic stress disorder (PTSD) from his years as a firefighter that called for medical intervention. Despite Mark’s PTSD being treated with the help of a support group, the forgetfulness pursued and over time, even “the support group individuals fell off [his] radar.” As a new nurse Maria and Mark’s daughter was able to give support and help within the system. Their daughter encouraged Mark to consult a neurologist.

Receiving a diagnosis

Over the next six years, Mark visited six doctors before finally receiving a diagnosis. Mark underwent cognitive assessment tasks, brain scans, and a lumbar puncture. Many of the results came back inconclusive. However, Maria knew that even though Mark presented himself as healthy, something was going on. At times she “felt like she was losing her mind,” at the lack of medical explanations for the changes in Mark. Nevertheless, she persisted in seeking expert opinions.

Finally, on April 5, 2024, at the age of 67, further testing at Stanford revealed that Mark had early-onset dementia with lewy bodies.

Dementia with Lewy bodies

Dementia with Lewy bodies (DLB) is a type of progressive dementia that leads to a decline in thinking, reasoning, and independent function. Lewy bodies may also be found in other types of dementia, namely Alzheimer’s and Parkinson’s disease dementia. Those with DLB typically experience symptoms like hunched posture and rigid muscles.

In hindsight, the lack of consensus for Mark’s diagnosis made sense. When diagnosed, Mark was told that the illness would present differently for him because of his athletic background. In fact, Maria notes that “the Parkinson’s aspect of DLB doesn’t show up [for Mark] except for twitching in his eyes.”

A proactive approach

Lifestyle changes can affect disease progression. Some of these strategies include engaging in regular exercise, eating healthier foods, and challenging your mind. Since Maria has a background in holistic medicine, she modified Mark’s diet and now, both of them have chosen to participate in clinical trials.

Clinical trials are research studies with human volunteers to assess the safety and effectiveness of treatment options. Given Mark’s athletic background, he participated in a motor skills clinical trial at Stanford in August 2024.

While clinical trials are important for those who have already been diagnosed with dementia, there are other trials for care partners and people who don’t have dementia at all. Maria took part in a study of care partners and appreciates being able to be an active advocate for this disease through involvement in these trials. Currently, Maria is looking into a microbiome study for Mark to participate in as well.

Care partner health

Amidst all the responsibilities caregivers face, it is important that they be mindful of their own health. Care providers for people living with the disease frequently report high levels of stress. 70% of care partners report that coordinating care for dementia patients is stressful. In order to deal with this, it is recommended that caregivers take care of their emotional and physical health.

Some of these recommended practices include talking to loved ones, exercising, and engaging in a hobby. For Maria, her daughter has been a great source of support. Additionally, reconnecting with poetry has proved to be a healthy way for Maria to express herself.

Reconnecting with poetry

Maria started writing poetry in her teenage years, and after Mark’s diagnosis, she found herself drawn to writing again. Maria recalls how she “just wrote everything she was feeling and it turned into a poem.” While some poems were about her surroundings, many of Maria’s poems were about “the small but noticeable changes” she observed in her husband.

Writing these poems has proven to be an outlet for Maria to express and let go of certain emotions. She describes the relief of writing a poem as being similar to “a run where she can just let [pent up feelings] out.” Now, Maria has a collection of 85 poems.

Here is one of the poems Maria wrote:

Radical Acceptance

My best friend is gone,
There is someone here in his place.
He was always there for me, my admirer, my lover and my friend.
Now outside our path and trails we've traveled, I am here for him.

All the opposites apply here,
Except one remaining fact.
He is with me in the physical
But his memory for detail has careened off its track.
Small motor skills are missing and confusion has set in.

One last thing to remember,
While the chaos slowly takes over.
This is who I married, the one that is my husband and is uniquely his own man.

Finding joy in little moments,
Clinging on for future reference,
To make it through each day.
Pretending to find relief, breathing into it,
So that my life can be graced by radical acceptance.
Trying to survive the trauma that none of us expected.
Climbing this terrible heart-breaking terrain.

Joining a support group

Wanting to connect with people, Maria sought out a support group. With help from the Alzheimer’s Association, and after trial and error in finding the best fit, Maria was able to connect with an early stage support group. This specific support group is actually two groups that run at the same time: one for people living with the disease and a separate one for their care partners.

The Del Mar Group has allowed Maria and Mark to connect with others and to share resources with these individuals. Maria reflects how “the support group has allowed what she’s been going through to be reflected to her.”

Advice for caregivers

As a caregiver and devoted wife, Maria knows how difficult a diagnosis like this can be. To others she advises that they “try to be strong” and “to find a community.” Maria knows that navigating this diagnosis can feel almost like “being on an island by yourself.” But, finding people to connect with allows like-minded people to interact.

You can find more information about caregiver resources and support groups on our website at alz.org.