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dementia

"I am still a dancer made of song."

Humans have been writing poetry for thousands of years, communicating feelings and ideas in beautiful, powerful ways that prose just can't quite reach. Poetry can be hard to define, but you know it when you see it—or rather, when you feel it.

Emily Dickinson once wrote, “If I feel physically as if the top of my head were taken off, I know that is poetry.” A poem hits you somewhere—your brain, your heart, your gut. And one poem that packs an incredibly moving punch has come from an unlikely source—an elderly woman with dementia.

Poet Joseph Fasano shared a message from a fan who shared that they had brought his book, "The Magic Words: Simple Poetry Prompts That Unlock the Creativity in Everyone," to their mother, a 92-year-old former ballet dancer living with dementia. The mother was excited to write a poem, and they slowly worked through a prompt from the book together aloud.

This poem was the result:

"Let the days be warm

Let the fall be long.

Let every child inside me find her shoes

and dance wildly, softly, toward the world.

I have a story I have never told

Once, when I was small,

I looked up at the sky and saw the wind

and knew I was a dancer made of song.

I am still a dancer made of song."

Wow. What a testament to the power of poetry to reach beyond our usual modes of communication, which dementia so cruelly disrupts. In a few simple lines, we're able to see this woman as she might see herself, as the human living under the veils of age and disease: "I am still a dancer made of song."

Poetry prompts can help people express themselves

The person who shared the poem thanked Fasano for "helping people find their voices," which is exactly what his book of poetry prompts was meant to do.

The Magic Words book"The Magic Words" is a book of poetry prompts from Joseph Fasano.Amazon

In the book's introduction, Fasano shares that he'd been invited to speak to a class of second graders in New Jersey in 2022 to share "the craft and magic of poetry." As part of his efforts, he came up with a poetry prompt that could "help guide their imaginations" and "unlock the images, thoughts and feelings inside them, without asking them to worry about how to structure a poem." He called the results "astonishing." When he shared one of the students' poems on social media, it and the prompt took off like wildfire, as people who never thought of themselves as poets felt empowered to share their imaginations within that framework.

From 7-year-olds to 92-year-olds, anyone can benefit from the self-expression that poetry facilitates, but many people feel hesitant or intimidated by the idea of writing a poem. Fasano writes, "Poetry is what happens when we let ourselves be," and this idea seems so clear than in the former dancer's poem above. Dementia can create roadblocks, but poetry provides a different avenue of communication.

younger woman looking at a book with an older womanCaregivers try many different ways to communicate with people living with dementia.Photo credit: Canva

The arts can be a powerful tool for people with dementia

Using poetry to help dementia patients communicate and express themselves isn't just wishful thinking. Studies have demonstrated that cultural arts interventions, including poetry specifically, can be beneficial for people with dementia. In fact, the Alzheimer's Poetry Project (APP) aims to use poetry as a means of improving the quality of life of people living with dementia by facilitating creative expression. "We do not set boundaries in our beliefs in what possible for people with memory impairment to create," the APP website states. "By saying to people with dementia, we value you and your creativity; we are saying we value all members of our community."

Poet Gary Glazner founded APP and shared a story with WXPR radio about how he came up with the idea while studying poetry at Sonoma State University:

“I applied for a grant and got a grant to work at an adult care program. The moment I love to share with people is there was a guy in the group, head down, not participating and I said the Longfellow poem. ‘I shot an arrow into the air’ and his eyes popped open and he said, ‘It fell to earth I know not where.’ And suddenly he was with us and participating. It was just this powerful moment to see how poetry could be of use to elders but specifically with people with dementia."

Whether we read it, write it, speak it or hear it, poetry has the power to reach people of all ages in all kinds of mysterious ways.

You can follow Joseph Fasano on Twitter and Instagram, and find his books on Amazon.

This article originally appeared last year.

Wellness

A woman with dementia adored her haircut. Her husband's letter to the stylist is everything.

"Looking back, it was likely dozens of haircuts you gave that day. But one which revitalized a woman's sense of self and her singular beauty."

Grab a tissue, folks, because this is one of those stories that has almost too much love and goodness to bear in it.

Sara Verkuilen was working at Hair Cuttery in Round Lake Beach, Illinois last winter when an older couple walked in for a haircut. "I don't think I had ever done their hair before," Verkuilen told Upworthy. "They were walk-ins."

The man and his wife were "just really cute together," she recalled. "He was so sweet with her and obviously very in love."

Little did Verkuilen know how much of an impression her personal service and professional skills would have on both them that day.


The stylist shared a letter she received recently from the husband, signed only as "a grateful customer." The letter reads:

"Dear Sara,

This is a little bit awkward. But I've waited a really long time to pass this on to you.

My wife and I came in for haircuts shortly before Christmas of last year.

My wife was suffering from dementia, and you treated her as if you'd been working with dementia patients all your life. You let us sit next to each other, and when it came time for her cut you turned her chair towards me so I could watch her expression as you cut her hair.

It turned out even better than I thought it would.

Sadly, she died in March. And that haircut was one of the last, best moments of her life. She felt so pretty. She visited the mirror in her bathroom several times during the day and would come out beaming.

To see her so happy was priceless.

Looking back, it was likely dozens of haircuts you gave that day. But one which revitalized a woman's sense of self and her singular beauty. I hope you always realize the power of your profession.

It's so easy to take things like that for granted.

Sincerely,

A grateful customer"

Verkuilen said she wishes she could contact the man.

She doesn't remember the couple's name and the letter didn't give any personal information, but it meant a great deal to her to receive it. She says she'd been feeling kind of stuck and bored in her career, which she's been in about eight years, and this letter gave her the boost she needed.

"Receiving this letter was a huge reminder why I do what I do," she said. "It's an amazing feeling seeing someone look in the mirror after a transformation and smiling. Seeing how beautiful they feel, how confidence levels change. But it's an extremely difficult career. I get burnt out easily. I hope this letter can restore faith in other stylists that are maybe doubting if this career is right for them. We touch more than hair and I hope all the stylists out there realize how important they are and how what we do can have such an impact on our clients."

She also hopes seeing the letter helps clients understand that stylists don't "just cut hair."

What a beautiful reminder to appreciate people who work in service jobs, the little things that make us happy, the "singular beauty" of our loved ones, and the time we have with them.


This article originally appeared on 7.10.20

Joy

Janitor and cook stayed to care for residents when nursing home shut down and staff left

Maurice Rowland and Miguel Alvarez refused to abandon the residents who got left behind in the "chaotic mass evacuation."

When a nursing home shut down, the janitor and cook stayed with the remaining residents.

True
#WhoWeAre

There are certain moments in life that determine your character. This was definitely one of those moments for Maurice Rowland and Miguel Alvarez.

Rowland was working as a cook and Alvarez as a janitor at an assisted living facility when suddenly they found out that the facility was going to close.

The Valley Springs Manor assisted-living facility was shut down by the California Department of Social Service in October of 2013, prompting a "chaotic mass evacuation" of staff and residents. Staff left because they weren't getting paid, but Rowland and Alvarez stuck around. There were around 16 residents left at the home with nowhere to go and nobody to take care of them. Some of them were sick and bedridden and some had dementia.


Rowland and Alvarez, who have been friends since middle school, had a conversation about what they were going to do. They decided they couldn't in good conscience abandon the residents who were left behind, so for the next several days they stayed and cared for them, making sure they were bathed and fed and got their medications—all without pay.

"I just couldn't see myself going home," Rowland said. "Next thing you know they're in the kitchen trying to cook their own food and burn the place down."

Alvarez said he would go home for one hour a day to take a shower and get dressed and then head back to the facility. His wife was upset at first because he missed a planned family trip during that time, so she drove to the center to see what was more important than time with her and their kids. What she found when she arrived left her "heartbroken," she told SF Gate.

Alvarez told StoryCorps that he'd been abandoned by his parents when he was young and knew how them leaving would make the residents feel. "I didn't want them to go through that," he said.

"If I would have left, I think that would've been on my conscience for a very long time," Rowland added.

- YouTubewww.youtube.com

The facility had a history of regulatory violations and inadequate care that led to the shut down, but the transition for the residents who needed to be transferred to other facilities was fumbled by the authorities.

"“The Department fell short of its mission to protect the health and safety of residents in Valley Springs Manor,” the Department of Social Services said in a statement after the fact. “The Division erred in not ensuring, through successful engagement with local partners, that relocation arrangements for all of the residents were complete.”

When one resident started to deteriorate, Rowland and Alvarez called 911, which alerted authorities to the situation the men and residents were in. A proper evacuation of residents then began, relieving the men of the duty they'd taken on to care for people who had no one else.

"Even though they wasn't our family, they were kind of like our family for this short period of time," said Rowland.

According to SF Gate, Rowland and Alvarez were honored for their sacrificial service with an award from the American Veterans Association, a certificate of special recognition from Rep. Eric Swalwell's office a commendation from the California Legislature, and a wave of donations from people who were inspired by their selflessness.

""We didn't expect any of this," Alvarez said. "We've never expected anything from anyone in life."

They may not have expected anything, but their big-heartedness paid off not only in recognition and financial support, but in the satisfaction of putting other people's humanity before themselves.


This story originally appeared on 9.29.16 It has since been updated.


Identity

Family shares beautifully practical 'sundowning' strategies for loved ones with dementia

The late afternoon and evening hours can be especially challenging for people with dementia and their caregivers.

Ty Lewis shares how she helps her mom, Gertrude, through sundowning time.

Anyone who has had a loved one with dementia knows how challenging it can be to care for a loved one whose memory is deteriorating. As they lose grip with their own reality, relationships take on new dimensions, emotions can become complicated, and love and grief walk hand in hand more often.

The good news is that no one is alone in these experiences. Nearly 6 million Americans have Alzheimer’s disease or related dementias, and according to the Alzheimer's Association, 83% of the help provided to these patients comes from family members, friends or other unpaid caregivers. Thankfully, some of those folks are utilizing social media to raise awareness and provide support and education about caring for people with dementia.

People like Ty Lewis.



Lewis‘ mother, Gertrude Jordan, was diagnosed with Alzheimer's disease in 2014, just a year after her own mother passed with dementia. Lewis has spent the years since learning and sharing all she can about caring for people with dementia, becoming an advocate and source of support for caregivers. She is now a Certified Alzheimer's Disease and Dementia Care Trainer and Certified Dementia Practitioner.

In a post on Instagram, Lewis shared some practical tips for managing “sundowning,” a term for the late afternoon and evening hours when many people with dementia have the hardest time.

In the video, Lewis' daughter Giavanni sings a song of praise that is clearly familiar while Lewis calmly and patiently talks to her mother. She doesn’t force it, but Lewis gently draws Gertrude closer to her as she starts to get upset, and we can see her calming down on the second time through the singing. "Music is a strategy," the text overlay reads.

As Lewis herself says, dementia shows up differently in every single person, but these tips might help caregivers who are feeling at a loss for what else to try.

Watch:

Lewis shared in the caption:

“Sundowning in Dementia typically occurs in the late afternoon and evening. During this time, your LO [loved one] will experience increased confusion, agitation, mood swings, anxiety, and behaviors will increase.

Sundowning is HARD! Here are a few strategies. As always, these strategies may or may not work with your LO. Try different ones to see what works best for you through observation + data collection.

1. Create a daily consistent routine.
2. Minimize environmental triggers (bright lights, strong smells, textures, etc)
3. Stay calm
4. Use music to soothe your LO
5. Create a relaxing environment
6. Avoid OVERstimulation
7. Contact your physician to discuss alternatives like medicine if you cannot control the behaviors.

For more information, visit incaseiforgetconsulting.com.”

The video brought people to tears as they recalled their own difficult moments with their loved ones.

"This was brutally hard with my mom. You all handled that so beautifully. Thank you for sharing. ❤️" — sarahdodge9

"I take care of a woman with dementia. It’s all about heart and the present moment. ❤️ 🥹" — abanomics

"Glad this is being discussed now so people can learn about it, although I wish it was when my great aunt was still alive. Gosh was it hard. I lived with her for a time to help with care, and nighttime was simultaneously heartbreaking and scary. She’d spend most of the night repeating the same path through the rooms, opening and closing doors, agitated and afraid, looking for her late husband, wondering why I was there (& by 'I' I mean my mother which is who she thought I was). Alzheimer’s is a thief that often steals our loved ones before death." — mamalifemagic

People who have worked with dementia patients offered praise and appreciation for the post as well:

"I work in an acute care hospital and unfortunately see dementia patients at their worst. Unfamiliar environment, minimal family interaction, acutely ill, and so on. Sundowning at the hospital can be extra stressful. This is so lovely to see the care and patience in the home. 💜 And of course the music.💜" — lesismore77

"I formerly worked in recreational therapy in skilled nursing homes and was hired specifically for this purpose (distract from sun downing behavior). Music is such a powerful therapeutic tool and a beautiful way to connect with a loved one with dementia. Wonderful video! 👏❤️" – amynjoedecker

"Thank you for this! I have been a nurse for 24 years and have never seen this kind of love with a pt in an active episode of sundowners. It's tortuous for a loved one to care for someone in this condition because they can no longer regulate their emotions. Our culture here in America has to change to beautiful examples just like this. Loving touch, calm touch, calm tone of voice, beautiful heartfelt song bird of a voice...all my love to all 3 of you. ❤️❤️❤️❤️" — corinnawallen

Lewis shares lots of helpful information for caregivers on her website, www.incaseiforgetconsulting.com, and you can follow her on Instagram here. (And if you want to hear more of that angelic voice of Giavanni's, you can follow her on Instagram as well.