Monday, April 1, 2019

Interview with Lori La Bey Healing for Dementia Patients and Family

Did you know that Dementia is one of the major causes of disability and dependency among older people worldwide, but it is not a part of the normal aging process? 

I’m including this hot topic now at Colors 4 Health. It's Part 5 of the Healing Series, because almost everyone knows someone who is or has suffered with Alzheimer’s disease or Dementia. 

Just a few weeks ago, our dear family friend died of Alzheimer's disease. I dedicate this post to all those who have had or will have some form of dementia.

Research shows approximately 50 million people have dementia, and there are nearly 10 million new cases every year worldwide.

Alzheimer's disease is the most common form of dementia and may contribute to 60–70% of cases. 

There is no cure for Alzheimer’s disease as yet, but there are many online resources for patients, caregivers, and the health professionals who treat them, due in large part to an energetic, imaginative woman named Lori La Bey.

Anita Jader Photography/Pin Nancy Andres

Lori La Bey is the Founder, CEO of Alzheimer’s Speaks. This organization offers multiple platforms to improve dementia care around the world including a radio show, blog, videos, articles, projects and initiatives

In fact, Dr. Oz and Sharecare acknowledge Lori as the Number One Influencer Online for Alzheimer's in the world.

Lori is a keynote speaker, trainer, and unfaltering champion for Alzheimer/Dementia Awareness. I'm grateful she agreed to take time out of her busy schedule to speak with me.

Lori’s podcasts and radio show bring vital information about Dementia and Alzheimer’s to the public, and she has been recognized by AARP MN as a 2018 “Disruptor and an Inspiring and Accomplished Leader.”  

Oprah named her a “Health Hero” and Maria Shriver named her an “Architect for Change.”

Lori has been concerned with memory loss issues for over 30 years, ever since her mother starting having memory problems. 

Lori’s mom was in the end stages of Alzheimer’s disease for 4 years, before she passed away in 2014. 

This journey has taught Lori many beautiful life lessons and changed her life.

Now to the interview questions...

Nancy Andres Question:

What motivated you to start Alzheimer’s Speaks?

Lori La Bey Answer:  

My mother’s journey with dementia was life changing. Feeling lost, unsupported, and with little direction, I sensed our family couldn’t be the only one who was frustrated, exhausted, and depressed by negative marketing, lack of education, and resources.  I decided to do something about that.  I left my career of 25 years and vowed not to work in a broken system.  I figured I could do no worse, but the possibilities of connecting families and professionals to services, products, and tools was exciting and well worth the risk. 

So I committed my time, energy, life savings, and retirement funds to shifting our dementia care culture from crisis to comfort around the world.  It’s been a long road, but in the past ten years, it’s been wonderful to see the changes occurring and the collaborations coming together to improve life for those diagnosed, their families and friends, professionals, and communities at large.

Nancy Andres Question:

Please share one meaningful event that occurred in your personal journey coping with your mom’s Alzheimer’s?

Lori La Bey Answer:  

As I walked into my mother's room I saw her shadow through the drawn curtain. It looked like she was taking a nap. 

I looked down from my Mother’s sweet smile and saw her top hiked up just below her breasts. Her elastic pants, now way too big, were just below her belly button. Mom’s full round tummy was exposed to the warmth of the sun.

“Hey Mom,” I said, “Do I need to pull out that bikini for you?”

Mom’s eyes twitched before she slowly opened them. She giggled like a small child and said, “Oh no Lori, I don’t think I should be wearing a bikini.” Then, she giggled some more, closed her eyes, and fell back to sleep. 

In the previous several months, she had lost her appetite, and had lost eighty pounds. As I rubbed her tummy to comfort her, I discovered she had a hernia. That and the bagginess of her clothes all said to me, Mom isn’t going to be around much longer

This disease is nibbling not only at her mind, her soul, but now her physical body. Alzheimer’s disease was winning the battle. I knew this all along, but today it just felt so permanent, so imminent.

You see my mother had been in the Nursing Home since 2001. She was diagnosed with Alzheimer’s disease in the mid 90’s, but had memory problems since the early 80's. My reaction that day was to sit and ball my eyes out.

My heart felt like it had been dropped kicked one more time. How many times have I said goodbye to yet another piece, another phase of my Mother’s life? My life? I had to say goodbye to a part of this wonderful woman I love with all my heart. I wondered how many more times are left.

With no warning God spoke to me so clearly.

 Lori, you have one more connection, one more great story to tell, one more wonderful memory of your mother. For that be grateful. Today it was the bikini story. Tomorrow is an opportunity for another story. Just embrace the moments. Write them down and share what you have learned. Find the gift wrapped inside the pain. Learn the lessons of the pain Lori. Learn the lessons. 

My body trembled and tears poured down my face like a faucet. My shirt was soaked, my eyes were so puffy. I could barely see, but my heart was once again full of hope.

As I left that day two things hit me. One, Alzheimer’s disease kills individuals multiple times on multiple levels. You can look at it as painful and one loss upon another; or you can look at it like a cat with nine lives. Each life being different from the last, but each offering much love and comfort. Love is simple, uncomplicated, lives within each of us. The lesson is to learn to love the many levels of the individual.

So each day since the bikini incident, I try to look forward to embrace each tiny moment with Mom with love and thankfulness for the gifts in my life, even those that cause me great pain and discomfort. I know each is a memory, each is a piece of her, and a piece of me that cannot be taken from us. 

Some days I admit, the chaos wins out. I crumble and cry. I lay broken as the cookie crumbles a bit more, and then another moment passes. Another day arrives, and I feel the warmth of the sun and I am thankful for the nine lives that live within each of us.

Lori gave her permission to edit this story. To read it in its entirety see The Bikini by Lori La Bey.

Nancy Andres Question:

In addition to this experience, what other things did you do to express your concern and love, and still make time to care for yourself?

Lori La Bey Answer:  

For my mom-

I developed a tool, Your Memory Chip.™” See it on YouTube. 

It asks three questions of me, and was developed, because I wasn’t always the gracious daughter my mother deserved.

1. What is the most important thing I want her to know?  That I love her, but I learned that words were not enough.  I had to use multi-sensory engagement to give her more ways to connect with me, remember me – my approach, my tone of voice, the perfume I wore, the words I used, how and when I touched...

2. What do I need to focus on to care for her?  I found it wasn’t my checklist.  I needed first to focus on was she happy, safe, and pain-free. This changed how I cared for her, how I viewed letting others in to help, and so much more.

3. What do I want to remember?  Well, if I want to remember her, I better look for and capture those moments of joy, no matter how small.

For me-

I did a lot of journal writing and writing down stories she told me to capture those special moments. I also made time to be with my friends weekly.  It filled my soul so I could care better for my mother, and feel more balanced in my life.  

Mediation was something I did too. I'd play a meditation CD, light a candle, turn out the light, and be still. I attended meditation classes as well. 

Gardening helped me feel really grounded. Sitting outside at night and being amazed and fascinated with the moon, stars, and nature was healing too. A massage didn’t hurt either!

Nancy Andres Question:

In retrospect, are there things you wish you knew more about, when you were dealing with your mom’s illness?
Lori La Bey Answer:  

Very basic information like what we could expect from her and the disease, how do we best care for her as a family, where can we find resources and support, when the doctors didn’t even seem to have answers, how to find other people living with and dealing with dementia, what was the Alzheimer’s Association and ways they could help us.

Hope and joy were never discussed, like they weren't an option.  It was a very sad state back then, and I’m glad things have changed. However, we still have a long way to go.

Nancy Andres Question:

What suggestions can you offer to those who have Alzheimer’s or another form of Dementia, and feel challenged and uncertain?

Lori La Bey Answer:  

Know there is still life to be lived with dementia.
Don’t give your relationships over to dementia. No matter what type of situation occurs, think of it is just another thing to adjust to. 
Know our relationships are always changing, but our connection with one another always remains – we just might have to communicate differently. 
Know you deserve services and support – so don’t be afraid to share your thoughts, feelings, and challenges with others and find creative ways to make a difference. 
Let your voice be heard.  Talk about your experience knowing it will help others on their journey.
Keep socially engaged
Advocate for those who have dementia and those caring for them

Additional reading and resources for you

Awesome ways to use colors for healing

Healing and recovery through self-compassion

Colors of Joy, Self-care Journal Prompts for Healing

Counseling for caregivers

Sorrow's Company: Great Writers on Loss and Grief

Tips to combine journal prompts and quotes to heal

Colors for self-compassion, healing, and recovery

Lori and her mother's touching story warmed my heart. 💖

It takes center stage in my healing series to show you ways to maintain your quality of living, as you come to terms with a serious health challenge. 

Even if you're not directly impacted by dementia, I hope it helps raise awareness about this condition and serves as reference material. 

Perhaps Lori and her mom's journey will help you be more fully present when you spend time with loved ones and while you take time for yourself.

Do you often notice and appreciate "things as they are in each moment," and feel grateful about being alive each day?

Please comment below and share on social media.

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  1. Great post with lots of helpful information. Pinned and shared

    1. Thanks for the visit, comment, and social shares Carol. Wishing you a beautiful day.

  2. As my family navigates alzheimers in my mother and dementia in my husband, this is a wonderfully supportive post. Thank you!

    1. Glad you saw my post and know that I send positive, healing energy to you.

  3. My dad had early onset Alzheimers and died in his mid 70's. It was tragic watching him disappear slowly and a relief when he passed away. We weren't close so that made it easier to let go, to watch someone you love dearly die incrimentally would be tragic. Thanks for sharing your story.
    Thanks for linking up with us at MLSTL and I've shared on my SM :)

    1. Thanks for your comment and visit Leanne. Sorry for your loss. It was a pleasure for me to link up at MLSTL (Midlife Share the Love) party, as I learn so much from each blog post. Have a beautiful day.

  4. The bikini story is lovely. Alzheimers runs in my family and I have dealt with these issues. I applaud the sharing of information to help families through this difficult disease.

    1. Thanks so much for your kind words. Have a beautiful evening.

  5. Hi Nancy what a wonderful interview with Lori La Bey and such an important topic. I haven't had first hand contact with family or friends who have had Alzheimers but do see dementia patients when I visit my MIL at her aged care home. I think sometimes it is worse for the family but Lori gives some very effective strategies for coping. Thank you for sharing her interview with us at #MLSTL. x

    1. Thanks Sue for the visit and comment. Lori La Bey is an amazing woman with, as you wrote..."some very effective strategies for coping." I'm thrilled I had a chance to interview her. Love #MLSTL and thank you for hosting. Nan