Five Steps to Becoming an Advocate for Those Who Have Alzheimer’s: Lori La Bey Shares Her Story

Lori La Bey was sick of all the negative information about Alzheimer’s Disease.
As a family caregiver for her mom, Lori didn’t appreciate the fear that surrounded the subject. 
 
 “I wanted to talk about hope and joy and the positive aspects that empower caregivers and those who are diagnosed with the disease.”  Lori says. 
 
Lori had a lot to share on the subject. Her mother had been dealing with dementia symptoms since the mid 1980’s and in 1996, she received a formal diagnosis of  Alzheimer’s disease. Lori, then age 37,  understood the challenges and stresses of being a working parent and a family caregiver. She understood the issues that her mom grappled with as she lived with Alzheimer’s. She also knew the feelings of joy, hope, and connection that she and her mother constantly shared. 
 
Stepping Out and Sharing
 “You have to tell your story,” friends told her. In 2009, Lori began to blog, focusing on the positive aspects of her experiences with her mom. 
 
“People were thrilled to hear the hope in my stories; they were tired of hearing all the doom and gloom,” Lori says.
 
Blogging led to speaking and speaking led her to training the staff who worked in her mom’s care facility and then to training in other care facilities, organizations and businesses. In 2011, Lori started her Internet radio program, Alzheimer’s Speaks. She recently launched a resource directory, which allows both professionals and the public to share information, and she is a leading resource in helping communities become more dementia-friendly. She has gradually eased out of her successful real estate career and has devoted herself to “Shifting Caregiving from Crisis to Comfort.”         
 
Five Foundations for Advocacy
Here are some of Lori’s tips for becoming a more effective voice for caregivers and for those who have Alzheimer’s. 
 
Rename Yourself
Consider yourself a “Care Partner” instead of a caregiver. “Caregiver sounds like you’re giving it all away and in reality, you’re sharing,” Lori says. “When you give, you receive.” 
 
Start the Conversation
Don’t be afraid to talk about your experiences with dementia. Often, you’ll learn friends, coworkers and even strangers are dealing with the same issues. 
 
Share Your Story, Your Feelings and Your Truth
Lori knew being vulnerable when sharing her own stories and authentically expressing her moments of sadness, triumph, anger, frustration, weakness, and happiness allowed others to feel comfortable  expressing their own emotions and stories.
 “Discussing all your feelings invites deep conversations and helps you build amazing relationships,” Lori says.  “Life is not perfect and we have to stop pretending it is.” 
 
Set Your Priorities
Give up trying to please everyone. “Focus on pleasing yourself and the person you’re caring for,” Lori advises. “Everyone else is secondary.”
 
Seek Involvement
Join a support group or start one to help others. Sign up for a dementia fund raiser, such as the Memory Walk.  Get to know people who have dementia. Start talking about the disease – share what you know. It doesn’t need to be complicated. Take dementia on as a cause.  
 
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lori la beyTo learn more about Lori and to hear our conversation with her click here on Alzheimer’s Speaks Radio.
For more information, please visit Lori’s website:
http://www.AlzheimersSpeaks.com   Lori La Bey, CSA, COS, AOSAD, Radio Host
Recognized by Dr. Oz and Sharecare as the #1 Influencer Online for Alzheimer’s!
651-748-4714

Six Spiritual Practices For Living with a Diagnosis of Dementia

Normally, you can put my friend Vicki Stoecklin in any city and she will easily get her bearings. From Paris to Dubai to Marrakesh, Vicki is used to working in and making her way around foreign countries.

So, at age 58, when she started getting lost in her own city, she knew something was seriously wrong.

Vicki had been plagued with a series of chronic physical ailments and she figured she’d deal with whatever this new issue was.Image 1

But she was caught off when the neurologist said bluntly, “You have dementia.”

“What am I supposed to do?” Vicki said.

“Live your life,” he said.

Learning to Live with Dementia

Initially, ”living life” was a huge challenge. She had trouble remembering where she’d put things; her feelings were disoriented. She could no longer drive and or do simple math. Her vision played tricks on her: she saw black holes where there were none. And she felt isolated from her community and friends.

But Vicki had a wealth of inner strength and resources. When she told me about her spiritual practices, I was inspired and moved. Here are a few of the ideas she uses to center and care for herself.

Learning Self-Compassion

“I learned to have compassion for myself,” she says. “If I’m having a hard time concentrating on a book, I stop and do something comforting, instead of pushing myself.”

Using Family Treasures to Encourage Contemplation Image

Vicki enjoys contemplating her grandmother’s hand made quilt, which hangs on the wall of Vicki’s meditation room. “She probably had Alzheimer’s when she stitched those squares together,” Vicki says.

Inviting out the Inner Artist

Vicki uses crayons, watercolors, and colored pencils to explore her own artistic process.

“My depth and visual perception is off, so my work is abstract,” she says. “I also find it meditative to color labyrinths and mazes.”

Opening the Heart to Spiritual Texts

Vicki has a number of trusted books she calls upon.

One favorite is Peace in the Storm: Daily Meditations and Prayers for Those Affected with Chronic Illness.  

“This book has been a great support to me,” Vicki says. “It’s about finding your relationship with God during the challenges of ongoing illness.” Another book that spoke to Vicki was Proof Of Heaven by Eben Alexander, a neurosurgeon who writes about his near-death experience. She also frequently reads Psalms.

Praying With and For Others

Vicki has a small box that she puts little prayers in for her grandson and her daughter. She has become a chaplain at her church and often prays for others. She also finds comfort in using the 24-hour prayer service at Silent Unity

Documenting Her Life Story

She has created two memory books — one for her work and one for her life. “These books are also reminders of the many happy memories over my lifetime,” she says.

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Q 4 U 

What are some ways you incorporate spirituality into your life?

If you’d like to contact Vicki, you may email her at Vicki vickiwhllg@aol.com

Celebrating the Differences: Our Teachers are Everywhere

Part of my journey has been opening myself to love in all its glorious guises. As my mother went deeper into Alzheimer’s, I also feel we went deeper into love, the kind of true emotion that goes beyond words.

I am now deeply in love with another amazing person, my granddaughter Annabelle Rose, who doesn’t yet have the words to express her feelings but whose  ability to connect is truly inspiring. 1378651_10151736173247955_1493338418_n

My daughter Sarah wrote this note to Annabelle and I wanted to share it with you. It really captures the essence of how we can appreciate, learn from and celebrate what is extra and unique about every one of us.

Warmly,

Deborah

Sarah’s  Journal Entry: October 1, 2013

Today marks the first day of Down Syndrome Awareness month — the first time that I have been aware, as it is Annabelle’s first October. Here is my wish:

Dear Annabelle,

I hope you recognize that having an extra chromosome makes you extra special. I do not want to define you by that addition to your DNA, nor do I wish to minimize the impact that it will have on your life. I believe that you will be able to accomplish great and amazing things. I hope to help you find your passion and to express yourself in every way. I want for you what I want for your brother. I will do everything that I can to give you a solid foundation — early intervention and love.  1376987_10151736175542955_1503456887_n

I have celebrated the last 7 months, expressing gratitude for my healthy and happy baby girl. I did not expect a girl. You are a blessing. Being different does not diminish or change that fact. I imagine life will be more of a challenge for you because of that fact. I hope to protect you from any cruelty or ignorance. I will work hard to educate and advocate. I am aware of Down Syndrome. It is with us everyday.  But this month, I aim to celebrate.

I believe that you will teach us just as we teach you. I have been forced to put my education and training into practice. I cannot live in the future — none of us knows what it will hold. However, we can plan, prepare, and then be mindful of this moment. Each moment with you is filled with joy and wonder — the sweetness of your smile, the magic of your laugh. I love to be with you. I love to help you get stronger and develop new skills. We are being trained, and the information is amazing. We will learn how to help you in the best possible ways. You have a team dedicated to your health, happiness, and future.

You are different, but you are the same.  You have an extra chromosome. You also have the same 46 that we have. You have a patience and sweetness that is hard to define. You have an interest in people and the world around you.  You stay awake to watch and observe, refusing to miss any action by napping. When you sleep, you sleep with abandon. You often “talk” during this time.  I could write for hours about how much I love you and all the special things that you do.

Your mom.

Sarah

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Photo Credits, Ann Brown

Connecting in Long-Term Care: Seven Sure Ways to Have a Great Visit

It wasn’t just an ordinary visit. I walked into the long-term care facility and made my way to the memory care unit. I paused in front of the locked door, pulled a crumpled scrap of paper out of my pocket and tapped the entry code into the keypad. As I walked to my mother’s room, her new home, I felt sad, confused and guilty. How was I going to connect with my mom in this strange new environment?

Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide, has 16 years of experience as a psychologist in long-term care and understands the emotions and confusions  family or friends might feel when visiting in a long-term care facility. Here are her tips for having a meaningful connection.

Seven Tips for Visiting a Loved One in a Long-Term Care Facility   

Many families find it stressful to visit their loved ones in long-term care, especially if dementia has changed their usual ways of relating. Here are seven ways to make the most of your visits:

  1. Help the room feel like home by bringing photos and bedspreads, creating an environment that feels more comfortable and familiar to your relative and more pleasant for you to visit.  Labeling the photos with names (such as “Oldest son, Sam”) provides reminders in your absence and clues for the staff that are with your loved one daily.
  2. Turn off the television or radio and close the door during your time together. When the room is quiet and free of distractions, it’s easier for someone with dementia (and for those with hearing loss) to focus on their visitors.

  3. Try to converse at the same height, sitting on beds or chairs rather than standing while your loved one is sitting. Bring in small folding chairs and stash them in a corner if you tend to have lots of visitors.  Remember, though, that some people react better to hosting just a couple of guests at a time rather than a possibly loud and confusing crowd.

  4. Use memory aides such as photos and magazines of beloved hobbies as conversation starters.  Creating a memory book together can be a great way to spend some time, especially if the focus is on enjoying the process and the conversation that comes from it rather than on completing the memory book in a set amount of time.

  5. Go with the flow of the conversation, allowing your loved one to talk about what’s on their mind, rather than asking questions they used to be able to answer but no longer can, which is upsetting for everyone.  For instance, replace, “Don’t you remember X?” with “Your flower garden was so lovely,” adding details that reflect your appreciation for their abilities and see what response this generates.

  6. Find pleasurable activities that don’t involve talking, if that’s beyond your loved ones’ capabilities at this point.  Listen to music, hold a private stretching class, go outside and enjoy the sun and the birds.  Just be, pleasantly, without expectations.

  7. Talk to staff members and to other visiting families and become part of the long-term care community.  Media reports to the contrary, most long-term care homes are filled with people who are trying to do the best they can for your loved one under challenging circumstances.  They can become your allies, supporters, and teammates in care.

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Eleanor Feldman Barbera, PhD is an accomplished speaker and elder-care coach with over 16 years of experience as aImage 1 psychologist in long-term care. Read her book, The Savvy Resident’s Guide, for the inside scoop on how nursing homes work and visit her award-winning website, MyBetterNursingHome.com, for more tips on how to thrive in long-term care.