Advocacy

“Stamp” out Alzheimer’s

Do your part to “Stamp our Alzheimer’s.” For twelve years Lynda Everman was a silent caregiver. Her husband, Richard, was diagnosed with Mild Cognitive Impairment in 1997; in an effort to preserve his dignity, she told few people what they were going through.“We were both introverts and private people,” Lynda says. “My husband and I were a team, taking care of each other, moving through a situation that was too painful to address in public.”
After she had to move her beloved husband into assisted living in 2009, she went on her first advocacy trip to her state capital, Nashville, where she began telling their story. She continues to be an ardent voice for all families impacted by Alzheimer’s and other dementias. Along with activist Kathy Siggins, Lynda campaigns for a semipostal stamp that could raise money for Alzheimer’s Disease research.
The proposed stamp is similar to the Breast Cancer semipostal: consumers pay a little extra for the stamp and the additional funds go to the NIH for medical research. As of May 2017, the US Postal Service has raised over $84.4 million dollars for breast cancer through sales of that stamp. Lynda and Kathy want the same opportunity for Alzheimer’s research.
 Lynda is determined to change the trajectory of Alzheimer’s disease through public policy, increased funding for biomedical research, and recruitment of volunteers for clinical trials. The Alzheimer’s Disease Research Semipostal Stamp is central to Lynda’s campaign for its potential to advance research and public awareness of Alzheimer’s. She has written to every member of Congress urging them to cosponsor the Semipostal and she and Kathy have made countless visits to members.

Here’s where you come in.

H.R. 2973: To provide for the issuance of an Alzheimer’s Disease Research Semipostal Stamp was introduced earlier this year by Reps. Maxine Waters and Chris Smith, Co-chairs of the Bipartisan Congressional Task Force on Alzheimer’s Disease and currently has 76 cosponsors. Lynda and Kathy hope to recruit at least 100 cosponsors so they may request a public Congressional hearing on the merits of the proposed legislation.The stamp  is bipartisan and noncontroversial; it requires no governmental funding or increase in taxes.
You can help RIGHT NOW by calling your congresspersons and asking them to cosponsor H.R. 2973.
“It is important to share your story and speak out for those who cannot,” Lynda says. “ Please help them and their caregivers—and help us make this fundraising stamp a reality.”
##
To call the U.S. Capitol Switchboard, dial 202-224-3121 and ask to be put through to the office of your Representative in the House.
If you don’t know the name of your Representative, you can get that information, as well as the direct line to his/her office, by visiting: http://www.contactingthecongress.org.
For more about Lynda’s work, please visit:
In addition to founding ClergyAgainstAlzheimer’s, Lynda served as a editor for “Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers” and their recently released Leaders Guide for support groups. http://www.usagainstalzheimers.org/networks/clergy/seasons-caring She has a blog post on UsA2: http://www.usagainstalzheimers.org/blog/its-time-alzheimers-stamp
 Lynda is a tireless advocate on many fronts. On her advocacy site, Help Stamp OUT Alzheimer’s, she shares research and legislative updates, caregiving tips, the work of fellow advocates, and words of encouragement. She is a founding member of three national networks, all under the umbrella of USAgainstAlzheimer’s: ActivistsAgainstAlzheimer’s, ClergyAgainstAlzheimer’s, and WomenAgainstAlzheimer’s; and was instrumental in launching the Faith United Against Alzheimer’s Coalition (FUAAC), a cooperative effort to mobilize all elements of the faith community in the fight against Alzheimer’s disease and related dementias.
Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

CITLOD very small

 

 

A Better Visit in the Land of Dementia

I’m always amazed at how a change of perspective can widen your heart and open your eyes. This is a story of how my friend helped me look at my mom in a new way and gave me me a better visit in the land of dementia.

Many weekday afternoons I stole away from my workday for a little rendezvous. I drove far into the southern part of the city.

There I hurried through the lobby, walked swiftly down the corridors and until I reached the locked door. There I punched in a secret code that allowed me into the inner sanctum, the memory care unit where my mother lived.

Walking into my mother’s room was always a surprise: I never knew who would greet me; a sweet curly-haired woman wearing a pink sweat suit and looking quietly compose? An anxious haggard woman who bent to pick up invisible lint on the floor and jabbered with invisible creatures lurking in the corners? Or an exhausted former beauty, lying across the single bed wearing an orange pullover and an adult diaper? My task was to appreciate every aspect of my complicated mother and whoever she was at the moment.

When my friend Maril asked, “Can I go with you to visit your mother?” I felt like a flutter of angels had gathered around me.

“Really?” I asked. “You want to see Mom with me?”

She did. I prepared her for our visit, describing Mom’s various moods. Maril did not seem shocked, worried or afraid. I told her about walking into the sometimes chaotic energy of the locked Alzheimer’s unit. She simply nodded as if this were an ordinary occurrence, which, for me, it was.

The day of our visit I felt lightness inside; I was eager to share my secret world with my friend.

Throughout the years, Mom has always been gracious with my friends and that day was no exception. Mom was sitting at a table in the dining room with a magazine in front of her. She looked pretty and serene and she smiled when we came in. We sat next to her and Maril took her hands.

“How are you Fran?” Maril said, looking into my mother’s eyes.

“Well I you know the scatter of it all,” my mother answered.

“I do know the scatter of it all. How are you getting along here?”

“Like a diamond in the sky,” my mother said.

As I listened to my mother and my friend talk, I was  so moved.

“Your mother is really something,” Maril said as we left the home. “I enjoyed seeing her. I’d like to go again with you sometime.” I was proud of my mother’s poetic and eccentric answers, proud of the way she engaged in the conversation. And I was grateful that my friend was able to appreciate my mother, listen to her words and intuit their deeper  meaning.

The visit was a huge gift for me. Seeing Maril engage with and appreciate my mom just as she was reminded me of the depths of my mother’s many talents and facets. This knowledge later helped me get through those moments when my mother seemed faraway or lost. My friend reminded me that there are so many ways to carry on a good conversation. All you need is attention, intention and love.

 

 

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

CITLOD very small

 

 

 

Making a Difference, One Island at a Time

“We are here to explore meaningful ways to stay connected throughout the dementia journey. We are all going to take what we’ve learned and we need the commitment of all of you to help us reach out to the families living with dementia in our communities,” Raymond Jessurun said when he introduced us at a gathering of healthcare professionals, family caregivers, and government representatives. Raymond, who is Secretary of the St. Maarten Alzheimer’s Foundation, is a passionate and inspiring speaker. He urged everyone to join as volunteers of the Alzheimer’s Foundation to spread the meaningful engagement throughout the island, making a difference, one island at a time.

As a group we discussed many engaging activities, including the joy of singing, the nurturing that animals can offer, the power of looking at art, and the creative conversations that cooking together can inspire. We strategized adding more laughter into the day and the importance of knowing each person’s musical preferences. We were also learned of the challenges family caregivers face, which in residential settings as in the Sint Martin’s Home are being addressed by professional caregivers.

Our host, Bregje Boetekees, Director of the White and Yellow Cross Care Foundation in St. Maarten, was deeply tuned into the importance of offering an array of individualized activities and to the comfort that nature brings to those who are living with dementia. She is overseeing the construction of a new elderly care facility with a large courtyard that will offer safe and ready outdoor access, as well as fertile ground for gardening and other nature-based activities.

As always, we left feeling inspired by each of the people we met.  Bregje and her team are constantly exploring ways to enrich the lives of their residents who are living with dementia. Raymond and the board members of the Foundation are an example of how a few compassionate and determined people can make a difference. Just eight years ago, Raymond was struggling to find his mother-in-law the dementia care she needed. His advocacy attracted other caregivers and this year their Foundation, which is recognized by Alzheimer’s Disease International, celebrates its seventh year of serving the community. In June, Raymond is co-coordinating a gathering of leaders of Alzheimer’s organizations of 15 Caribbean countries as a step to forming Alzheimer’s Caribbean. These advocates are making a difference, one caregiver at a time, one facility at a time, one island at a time.

###

We invited everyone to join us in Dr. Madan Kataria’s Ha Ha chorus. Watch this and please, sing and laugh along. Click here to view the St. Maarten HaHa Chorus

For more about Laughter Yoga, visit Madan Kataria’s website, http://laughteryoga.org

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

CITLOD very small

Paradise Lost and Found: Two Women Take Action on Alzheimer’s

Like most visitors to Bermuda, we were interested in the lush sand beaches and warm tourmaline ocean waters. But we were also  interested in meeting Liz Stewart and Marie Fay of Action on Alzheimer's. These  two women are using their considerable energies, connections, and talents to enrich the lives of Bermudians who are living with dementia. Liz and Marie inspired us with their passion and accomplishments and we wanted you to meet them as well.

~~~~~~~~~

"Now what?"

That was the question Liz Stewart asked after her mother was diagnosed with dementia. It was 2004 in Bermuda and Liz could not find any support services for herself or her mom. She was thrust into the care partner's role without any education on the subject of dementia. Liz knew, "It's not what you know; it's what you can learn," and Liz began learning fast. She soon realized she was not alone. In Bermuda, there were hundreds of people living with dementia.  Liz's quest to help her mother turned into a determination to help others living with dementia. She formed a non-profit organization, Action on Alzheimer's, in late 2012. She volunteers her time and works with Marie Fay, an occupational therapist with special dementia training, offering support services, education, and training throughout the islands.

13010685_10154200736871108_2201684352752478315_nLiz and Marie are a two-woman transformation team who have gathered other like-minded people.

They provide free dementia training to the island's care communities, hospitals, doctors, and families. They collaborate with local musicians and movement specialists and host frequent expressive arts sessions, including drumming, movement, and singing. They work with government officials, advocating for those who need more resources.  And they are talking about the issues, raising consciousness through Alzheimer's Awareness runs, wine-tasting fundraisings, and community events.

Now, when someone is diagnosed with dementia on Bermuda, they don't have to feel totally isolated and confused. They can turn to Action on Alzheimer's.

If you know of other people who are making a difference, please let me know. I love being inspired by the passion and compassion of world-changing souls.

 

To learn more about Action on Alzheimer’s, visit  www.alzbermuda.com

12038228_10153700906971108_3788623937754805612_n

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

CITLOD largeJPG
litlod-crp-cover-1

Building London’s Bridge between Dementia and the Community

Imagine a global community of people diligently working to make the world a better place for people who are living with dementia. We met a few of the esteemed people who are making a difference on a recent trip to the United Kingdom and to France. Esther Watts has a passion for creating dementia friendly communities that is contagious. Talking to her gave us a lot of ideas and spurred us onward to collaborate on a dementia-friendly movie event in Kansas City. Plus, her workplace is located near the Thames and after our meeting, she took us to see the Queen’s Golden Barge, which was quietly waiting for its next chance to carry Her Majesty.

imgres

 

London is already one of the world’s great cities and Esther Watts is helping to make it, and other cities throughout England, even better. As coordinator of the Alzheimer’s Society’s Dementia Action Alliance (DAA), she orchestrates policies, events, and activities tailored to people living with dementia.

Esther and a team of Dementia Action friends have contacted bus companies, arts organizations, retailers, sports authorities,and hospitals in behalf of those living with dementia.

“Our goal is to keep people going out in their communities, enjoying new experiences and meeting new people,” Esther says. “We want people to feel comfortable and welcomed.”

 

IMG_0335Royal Ways to Create Community Experiences

She and her team collaborate with some distinguished clients, including the Victoria and Albert Museum, Kew Gardens, the Royal Academy of Arts, historic Royal palaces, such as Hampton Court, and various sports organizations.

One of her projects was a dementia-friendly cricket match. Esther and her team scored free tickets for fans that are living with dementia and their families. They had plenty of trained Dementia Friends on-hand to welcome these fans and escort them into the stadium. There they showed a special short film on the history of cricket and shared items from the cricket museum. For those who needed respite from the excitement of the match, the stadium offered a designated “Quiet Room.”  When London celebrated Dementia Awareness Week, DAA wrote the Society of London theaters, asking for dementia-friendly playgoing experiences.

IMG_0383Advocates pledge to take three action-steps, which can be as simple as visiting a friend who is living with dementia or as complex as creating a self-guided museum tour for people living with dementia.

“Dementia Awareness Week gives a community a focus,” Esther says. “DAA is about what we can do together.”

##

Please share your ideas for action-steps. One of mine is to try to stay in regular touch with friends who are living with dementia.

For more on the international scene, dive into my book, Connecting in the Land of Dementia: Creative Activities to Explore Together.  Pre-order your signed copy.

CITLOD very small

How to Create a Network of Dementia Friends

Ron and I recently traveled to Europe and we were lucky to meet with several creative thought leaders working in the field of dementia. Over the next weeks, we’ll share some of their insights with you, ideas we can incorporate into our every day lives as care partners, friends, and dementia advocates. We met with Philippa Tree, Senior International Officer Alzheimer’s Society UK, in a charming coffee shop located near the Tower of London.

The U.K. has more than one and a half million Dementia Friends, and 10,000 Dementia Friends Champions, volunteers who deliver the Information Sessions. Their goal–four million Dementia Friends in the next two years.

IMG_0285Philippa Tree is part of the Dementia Friends team at Alzheimer’s Society UK. The Dementia Friends programme is a social action movement that aims to transform the way England and Wales think, act, and talk about dementia. It started in 2012 when the Prime Minister of the United Kingdom, in partnership with Alzheimer’s Society UK, urged his country to focus on building dementia-friendly communities.  He became a Dementia Friend and challenged others to join him.

The free Dementia Friends Information Sessions help people understand what living with dementia might be like. The sessions also offer small action steps so people can make a difference to those affected by dementia in their community.  Anyone of any age can be a Friend by attending an information session or watching an online video.

Philippa’s work with Dementia Friends extends beyond the UK and across the world. She’s recently been collaborating with partners in the United States to roll out a pilot Dementia Friends program in the near future. At the recent Alzheimer’s Disease International  Conference in Budapest, Philippa facilitated a session with countries including Nigeria, Germany, Israel, Scotland, Canada, and Indonesia.

IMG_0301“After only two years, Dementia Friends has become one of the UK’s biggest social movements on any disease.” Philippa says. “We’re working on using positive language and spreading positive messages as we tackle the stigma around dementia. My current role is to support countries worldwide to implement a Dementia Friends program, and to learn and share experiences.”

While Philippa and her team are working in England and Wales, and worldwide, each of us can make a difference on a local level.  Here are examples of action steps people have enjoyed taking:

 

  • Share positive stories about friends and family who are living with dementia. This helps reduce the social stigma.
  • Volunteer for creative programs and events for those who are living with dementia.
  • Spend time visiting family and friends who are living with dementia.
  • Talk to other care partners and ask how their lives are enriched through their caring experiences.

For more information about the Dementia Friends programme, please visit their website : www.dementiafriends.org.uk.

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

COMING SOON: CONNECTING IN THE LAND OF DEMENTIA: CREATIVE ACTIVITIES TO EXPLORE TOGETHER

Stamping out Alzheimer’s

For twelve years Lynda Everman was a silent caregiver. Her husband, Richard, was diagnosed with Mild Cognitive everman-1Impairment in 1997; in an effort to preserve his dignity, she told few people what they were going through.

“We were both introverts and private people,” Lynda says. “My husband and I were a team, taking care of each other, moving through a situation that was too painful to address in public.”

After she had to move her beloved husband into assisted living, she went on her first advocacy trip to her state capital, Nashville, where she began telling their story. Along with activist Kathy Siggins, Lynda campaigned for a semipostal stamp that could raise money for Alzheimer’s Disease research.

il_570xn-567731996_82cgThe proposed stamp is similar to the Breast Cancer semipostal: consumers pay a little extra for the stamp and the additional funds go to the NIH for medical research. The US Postal Service has raised more than 81 million dollars for breast cancer through sales of that stamp. Lynda and Kathy wanted the same opportunity for Alzheimer’s research.

Lynda has been a tireless advocate for fighting Alzheimer’s. On her advocacy site, Help Stamp OUT Alzheimer’s, she shares research and legislative updates, caregiving tips, the work of fellow advocates, and words of encouragement. She is a founding member of three national networks, all under the umbrella of USAgainstAlzheimer’s: ActivistsAgainstAlzheimer’s, ClergyAgainstAlzheimer’s, and WomenAgainstAlzheimer’s and a Board Member of Beating Alzheimer’s By Embracing Science. Together they campaign for policy change and for increased funding for Alzheimer’s research.

Lynda has written to every member of Congress urging them to cosponsor the Semipostal and she and Kathy have made countless visits to members.

Lynda and Kathy visited more than 60 members of Congress, trying to persuade them to sponsor and approve the Alzheimer’s semipostal. Both the House and Senate have to give their “stamp” of approval before the Congressional Budget Office can consider the project.

The bill was introduced in the House as part of the Alzheimer’s Action Now initiative and has 63 cosponsors. Sen. Mikulski will reintroduce a companion bill in the Senate very soon. But if the bill doesn’t pass by the end of the year, it expires.

Here’s where you come in. The stamp requires no governmental funding or increase in taxes. It’s bi-partisan and bi-cameral. You can help RIGHT NOW by calling your congresspersons and asking them to cosponsor H.R. 3092.

“It is important to share your story and speak out for those who cannot,” Lynda says. “ Please help them and their caregivers—and help us make this fundraising stamp a reality.”

m-mead-quote

Ask that the Postmaster General use her authority to issue an Alzheimer’s Disease Research Semipostal independent of the legislative process. Simply go to: : https://www.uspsoig.gov/blog/putting-stamp-good-causes

To call the U.S. Capitol Switchboard, dial 202-224-3121 and ask to be put through to the offices of your two Senators and Representative. If you don’t know the names of your representatives, you can get that information, as well as the direct line to their offices, by visiting: http://www.contactingthecongress.org.

For more about Lynda’s work, please visit:

www.clergyagainstalzheimers.org and http://alzbabes.org/

In addition to founding ClergyAgainstAlzheimer’s, Lynda served as a editor for “Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers” and their recently released Leaders Guide for support groups. She has a blog post on UsA2: http://www.usagainstalzheimers.org/blog/its-time-alzheimers-stamp

For more about the semi postal, please visit www.alzjourney.com/2014/02/15/help-stamp-out-alzheimers/

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. 

COMING SOON: CONNECTING IN THE LAND OF DEMENTIA: CREATIVE ACTIVITIES TO EXPLORE TOGETHER

Ten More Steps to Make Your Community Dementia-Friendly

I’ve been thinking about Michelle’s ideas, inviting us all to be part of creating a more-dementia friendly community. Here are additional thoughts from Michelle Niedens, L.S.C.S.W. Director of Education, Programs and Public Policy, at the Alzheimer’s Association’s Heart of America Chapter.

What volunteers would walk with their neighbors who were living with Alzheimer’s disease, so they could exercise and visit with others, without worrying about getting lost?  dem 3

What if neighbors volunteered to visit regularly or run an errand?

What if law enforcement went beyond Silver Alerts and had standardized protocol for individuals who wander and go missing?

What if gas stations and convenience stores had training to recognize someone who might be lost?

What if pharmacies provided support information any time an Alzheimer’s drug was prescribed?

What if doctor’s offices had “memory aware” time slots, so people living with dementia wouldn’t have to wait in a noisy, chaotic environment?

What if there were geriatric urgent care settings?

What if grocery stores had a “slow down” line?

What if grocery stores had designated times when shopping support was available?

What would it take for all of us to be “memory aware” and to act on that?

dem 2……………………..

I want to do something to help here in Kansas City, but I haven’t yet decided what. In my upcoming book, Staying Connected in the Land of Dementia, I write about Meet Me at the Movies & Make Memories, a movie-going event for those living with dementia and their partners, co-created by John Zeisel. That really appeals to me and I’m thinking about contacting local theater owners. I welcome collaborators and I also would love to hear your ideas. What actions are you inspired to take?

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

Eight Paths towards a More Dementia-Friendly Community

On November 10, 2015, Michelle Niedens, L.S.C.S.W. Director of Education, Programs and Public Policy, at the Alzheimer’s Association’s Heart of America Chapter, gave a beautiful talk, inviting all of us to contribute to a compassionate, inclusive, and dementia-friendly community. Her ideas are both simple and profound and offer a challenge and an invitation for all of us. Over the next two weeks, I’m going to share some of Michelle’s visionary “what if” thinking.

From Michelle:

What would it take for all of us to be memory aware and to act on that?dem 4

What if restaurants had finger food menus? What if restaurants had specials from the finger food menu in the middle of the afternoon, when there were fewer people in the restaurant and things were quieter?

What if theatres had showings designed “memory aware”?

What if theatres had showings of old movies monthly with the “memory aware” icon on the website, so families could still enjoy getting out and having the cinema experience?

What if radio stations played songs related to memory issues in November (Alzheimer’s month) or April (Caregiver month)?

What if retail stores had designated days when the staff wore “memory aware” name badges and could provide more support to shoppers?

What if technology-based stores had annual displays of products that support memory, safety, or organization?

What if faith communities identified in bulletins/newsletters those activities that were “memory aware?”dementia friendly

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

 

Four Ways to Support Care Partners

We all know that wrenching feeling of wanting to support our friends who are immersed in being care partners but not understanding how best to help. Many of us know the feeling of being exhausted care partners and not knowing just how to ask for the help we need.

Mara Botonis, author of When Caring Take Courage, created a list of meaningful tips, captured in a note to friends from a care partner. I really appreciate her empathetic yet practical outlook and wanted to share a few of her ideas with you.  cut flowers

 

 

The Present in the Present

I so appreciate you wanting to help me, I don’t always have time to read a book, watch a movie, or accept your generous invites to restaurant meals or spa treatments. The best gifts save me time and energy and are a treat I can enjoy at home without arranging care. I would love a visit that includes a pre-made dinner we can share. Any of these thoughtful gifts would lift my spirits: a CD with my favorite songs, a favorite dessert or snack, a chance to play a favorite game with you, a soft cuddly blanket, or fresh flowers.

 

Write Me

Write me a note or an email. I can’t always talk on the phone or devote the time I’d like to an in-person visit.   I’m usually only “free” to socialize when my loved one is sleeping and even then, I am alert to his needs. If you write to me, I can read it when I have time to truly enjoy it.

 

Share Memories

women photo albumReminisce with me. I willingly and lovingly put another person first for most parts of my every day. Sometimes I feel like big parts of me get lost so please remind me of our earlier times together. You may be the only one I get to do this with.

 

Please Stay in Touch

You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes and I’m here every day. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying. #

 

When caring takes courage

After thirty years working in healthcare throughout the United States, Mara’s life was forever changed when a close family member was impacted by Alzheimer’s.

Please visit her website:

Website: http://www.whencaringtakescourage.com/

Amazon: http://www.amazon.com/When-Caring-Takes-Courage-Compassionate/dp/1478730536/ref=tmm_pap_title_0?ie=UTF8&qid=1400634987&sr=8-1

 

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.