One Easy Way You Can Help “Stamp Out” 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 very 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.

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. The US Postal Service has raised more than 78 million dollars for breast cancer through sales of that stamp. Lynda and Kathy wanted the same opportunity for Alzheimer’s research.

Lynda has become 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. In 2013 she shared her full caregiving story, using it to introduce herself to politicians, community volunteers, caregivers, and other activists. 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. She 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 stamp.

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 congressperson and Senators, and asking them to cosponsor H.R. 1508 and S. 1091.

“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 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: http://www.leadcoalition.org/2013/11/journey-caregiver-activist/

For more about the semi postal, please visit http://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.   

 

 

 

Advertisement

The Zen of Playing at Seeking

   Is it possible to have ten pairs of reading glasses and lose them all in the same afternoon? 

“I don’t know where my glasses are,” Mom tells me. I bite my lip; she’s been misplacing things all day. We are supposed to be spending a day drawing and painting, trying to connect mom with the artist she used to be. We are supposed to bake cookies together and look through magazines. But I’ve been spending much of the time crawling around, looking under the sofa and chairs and between the cushions for the disappearing glasses.

“Let’s make our cookies. You won’t need your glasses for that,” I say.

“I need my glasses.”

           As I search, I wonder when it became drudgery instead of a job to find things. One of our favorite childhood games was Hide ‘N Seek. I loved being the Seeker, loved the surprise of finding someone in a tucked away, mysterious place. I had a special trick I used when I was “It.” I would close my eyes and say, “If I were Dan, where would I hide?” Then an image would float into my mind and I’d race to the hiding place. Half the time, I was right.

Do I still have “it?” I closed my eyes and say, “If I were Mom’s glasses, where would I be?” The refrigerator comes to my mind. I rush into the kitchen and fling open the refrigerator door, only to see the usual chaos. But I’m hungry, so I reach for an apple. Behind the fruit is a pair of reading glasses, sprawled across the shelf.

Triumphantly, I take the glasses to Mom.

“These feel nice,” she says.

Not only has my mother reminded me of the creative importance of play, but she also discovered a great summer time tip: cool off your glasses.   

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

 

Seven Secrets for Creating a Care Partners Support Group

“Kindred Spirits are not so scarce as I used to think. It’s splendid to find there are so many of them in the world.”                                               —  Anne of Green Gables

Recently, Ron and I were honored to share stories and ideas with a dementia-focused caregiver support group at Hallmark Cards. Every month, the group welcomes a guest speaker and discusses an interesting aspect of caregiving. The group shares resources, caregiving ideas, family challenges and more.

“To learn how others have managed challenging experiences is so very valuable,” says Gini Toyne, RN, MBA, from Creative Care Consultants, who facilitates the group.

Gini contributed to these tips for creating a monthly support group:

Find Kindred Spirits

Find one or two people who share your situation. Ask them to meet you for breakfast, lunch or coffee.

“Believe me,” Gini says, “when you start sharing and troubleshooting, the group will quickly grow in size and value.  You will be amazed at the number of folks who will want to join in. “

Agree on Group Goals and Behaviors

Agree on a regular meeting time. Be flexible: meet by phone or Skype when meeting in person doesn’t work. Agree on a facilitator, who’s dedicated to keeping the group focused and on-topic and who makes sure everyone is heard.

Create a Safe Space for Sharing

Create a safe and confidential atmosphere; agree that you’ll keep all comments and stories confidential and that you’ll listen to each other with openness and empathy. Agree to share ideas and avoid offering unsolicited advice.

Share Caregiving Journeys

Initially, invite group members to tell their caregiving story. Ask someone to write the stories down, so when a new member joins, they can read about the others.

Discuss Challenges, Issues, and Concerns

Ask members to keep a journal of challenges. Invite them to bring one question, challenge or concern to the each gathering.  Discuss each person’s issues, managing the time, so everyone has equal chance to be heard.

Share Resources

Save time for questions and discoveries, so members can ask for advice and share resources.

Celebrate and Acknowledge The Journey

Take time to appreciate the energy, innovation and attention each member is offering to their loved one.

Share pieces of wisdom and moments of joy and connection.

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

 

Top Three Ways to Celebrate Mother’s Day When your Mom Has Alzheimer’s

“I don’t know what to do about Mother’s Day,” a friend recently told me. “I used to celebrate with my mother, but Mom doesn’t really recognize me now and the holiday won’t mean anything to her.”

My friend was not alone in her dilemma: according to the Shriver Report,  ten million women either have Alzheimer’s or are caring for someone with it.

I’d faced the same issue with my mom as she sank into Alzheimer’s. But I’d decided that celebrating Mother’s Day was important for me and for my family, even if Mom didn’t truly understand what was going on.

Here are three tips I devised for reducing the sadness this holiday can trigger and for substituting a celebration of renewal and connection.

Feel Your Frustration and Grief

The happy-family-candy-and-flowers Mother’s Day television commercials seemed to shout at me: “Your mother is no longer who she used to be!” That was true and a spike of sorrow stabbed at me as I mourned my “normal mom.”

Celebration: Talk about your feelings with empathetic friends; feel your grief and the frustration. Explore ways to express yourself, perhaps through journaling, collaging, stomping about. Or cocoon and immerse yourself in mournful movies and music.

Activate Your Appreciations

My mother could not complete a sensible sentence, cook a simple meal or dress herself. She did not know my name or remember any of my accomplishments or stellar qualities.

Celebration: Notice and appreciate the good in your situation. Even though Mom didn’t remember my name, she also didn’t remember any of my shortcomings. She was no longer critical of my parenting skills and no longer shy to show affection. She had a dazzling smile, a whimsical giggle and an ability to look into my eyes. She was content with who I was, whoever I was. These were qualities to celebrate.

Celebrate Yourself and Your New Relationship

Since my mom could not care for herself, I learned to care for her. Our lives wove together and we became deeply connected, as I emerged from being just a daughter to becoming an advocate, spokeswoman and historian for my mother.

Celebration: On Mother’s Day, I stopped to celebrate myself, my flexibility, my sense of humor, my steadfast feelings of responsibility. I gave myself the gift of time and appreciation.

7 Ways to Concoct a Creative Celebration

Share favorite memories

Tell her favorite life stories

List her opinions, maxims and worries

Sing along to favorite family music

Muse over family photos

Serve up easy comfort foods

Share what you’ve learned from your journey with her

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