Nov 172016
 

My experience with Alzheimer’s started in 2001. My grandfather (my father’s father) died of what was first described to me as senility. I was in my early 20s and thought nothing of it; people in their 80s just forgot things.

It was not until 2009 or 2010 that I started to pay closer attention. We later discovered that my grandfather had had dementia. That’s when I also learned that my grandparents on my mother’s side of the family – both my grandmother and grandfather – also had a form of the disease. My living grandfather has early stage Alzheimer’s. My grandmother was diagnosed with senior dementia.williamwalk

This cause is important to me not only because my grandparents have the disease, but also because I am a financial advisor with Edward Jones, and I work with families currently living with this disease. Over the years, Edward Jones has helped many families work toward their financial goals, many of whom have dealt with Alzheimer’s disease or dementia.

It wasn’t until January 2016, when Edward Jones announced it was stepping forward to become the National Presenting Sponsor of Walk to End Alzheimer’s, that I learned about the many resources provided by the Alzheimer’s Association, including educational and outreach programs right here in my own backyard (Reno). I now actively share this information so that members of my community are aware that the Alzheimer’s Association is in local communities and here to help them!

Getting involved was surprisingly simple. When Edward Jones asked about helping with local outreach at Walk to End Alzheimer’s, I responded immediately. They put me in touch with my local Alzheimer’s Association chapter and offered me a position as a volunteer for our local Walk. In addition to helping the Alzheimer’s Association, this also gave me the opportunity to learn more about the resources available to help my grandparents and my clients.

As part of my personal commitment:

  • I’m now the mission chair for the Reno Walk to End Alzheimer’s.
  • I serve as the Edward Jones Northern Nevada regional coordinator for the Walk partnership. I’m proud of Edward Jones’ $4.7 million commitment over two years to support the mission of the Alzheimer’s Association. As part of that commitment, the Alzheimer’s Association will work with Edward Jones to create the Edward Jones Alzheimer’s Research Fund, a targeted effort to advance research toward methods of treatment, prevention and, ultimately, a cure at a quicker pace. The Alzheimer’s Association will provide education programs to associates at Edward Jones, and will work to ensure Edward Jones associates are equipped to share the resources of the Alzheimer’s Association with their clients.
  • I volunteer with the Community Foundation of Western Nevada Caregiver Support Initiative.
  • And, I volunteer with AskSara, a free contact service for individuals facing life changes, such as caring for aging parents.

Photo courtesy BMW Photography

I want my family to be safe and sound, and I want to tell my clients – many of whom have become friends – that to know that they aren’t alone when facing this disease. Thanks to what seems like fate, I’m proud to say I work with this great organization and plan to continue until there is a cure.

About the Author: William Palmer is an Edward Jones financial advisor in Reno, NV and mission chair for the Reno Walk to End Alzheimer’s.

Group photo courtesy BMW Photography.

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Nov 142016
 

Today, there are an estimated 5.4 million Americans living with Alzheimer’s disease. And while most people associate the disease with old age, the fact is there are 200,000 Americans under the age of 65 living with it today. As with all forms of the disease, early-onset Alzheimer’s is a progressive, terminal disease, which cannot be prevented, cured or even slowed.

Since the onset can occur in people as early as in their 30s and 40s it often strikes during an individual’s prime working years, and as the disease progresses it prevents gainful employment. As a result, individuals are coming to grips with a devastating diagnosis all while losing employment and the salary and benefits that come with being employed. These individuals and their caregivers then must figure out how they will pay for their care.

Thankfully, since 2010 the Social Security Administration (SSA) has helped these individuals by adding Alzheimer’s disease to its Compassionate Allowances Initiative. The initiative identifies debilitating diseases and medical conditions that meet the SSA’s disability standards for Social Security Disability Income (SSDI) or Supplemental Security Income (SSI). This allows for faster payment of Social Security benefits to individuals with Alzheimer’s disease, mixed-dementia and Primary Progressive Aphasia.

The Alzheimer’s Association actively worked with the SSA for the inclusion of early-onset Alzheimer’s disease and advocating on behalf of individuals with early-onset (younger-onset) Alzheimer’s disease. As the SSA was considering this decision, the Alzheimer’s Association provided comments to the administration and commissioner, held numerous meetings with SSA staff to advocate for the inclusion of Alzheimer’s disease and related dementias, and Alzheimer’s Association CEO Harry Johns testified during the SSA’s public hearing about the inclusion of early-onset Alzheimer’s disease. Since then we have worked closely with the SSA in support of the implementation of this Initiative nationwide and to educate our community about this benefit.

And since its implementation it has had a profound impact on the Alzheimer’s community, helping thousands of families including Tom and Julie Allen. Tom was looking for a way to help manage the costs of Julie’s Alzheimer’s care, since his retirement and two part-time jobs were not enough to cover the large costs of Alzheimer’s disease. Through working with the Alzheimer’s Association and the SSA he was able to secure for Julie the SSDI benefit.

Social Security benefits are very important to individuals with early-onset who are unable to work and have no other source of income. At the Alzheimer’s Association we hear from family caregivers about the challenges they face paying for care. As was the case with Tom, the financial complications and solution finding falls to the caregiver. That is just one of the reasons why we celebrate November as National Family Caregiver Month and we take time  to honor the 15 million caregivers for those living with Alzheimer’s disease.

To learn more about how SSDI works and if it may be available to you, visit www.alz.org/SSDI or call our 24/7 Call Center at 1-800-272-3900.

This blog appeared originally on the Social Security Administration website blog.  

About the Author: Robert J. Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movementegge_2014-1

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Nov 142016
 

We sat down to talk with Richard Lui, news anchor for NBC and MSNBC and long-distance caregiver for his father, who is living with Alzheimer’s. Every week, Richard travels coast-to-coast to be with his family.

Tell us about your father Steven’s Alzheimer’s diagnosis and how it came about.

luiwithfather

It began with a diagnosis of dementia. The interesting part is my Dad never had a great memory – it was something we joked about. However, what started to happen was much more extreme.

Dad is one of 13 children in his family, and at Christmas, his youngest sister Fannie pulled me aside and said, “I’m concerned, Steve is forgetting our names.”  He agreed he should get tested. This was about five years ago, and it resulted in a diagnosis of early signs of dementia. It wasn’t until about a year and a half after that that he was diagnosed with Alzheimer’s.

I’ve always traveled back to San Francisco from New York for family gatherings. During these visits, I was able to see moments in time — snapshots of my Dad, if you will — and I began to notice the differences in him. It was probably more nuanced for my mother, who lives with him, but I saw it, and now make the 5,000-mile round trip to see him once a week most months.


As a caregiver, how do you make this long-distance, long-term travel work with your schedule as an anchor and reporter?


The practice of consistently going back and forth helps me gather the information I need in a short amount of time. I try to stay with my parents when I come back so I can observe the nuances and changes…how it’s difficult for Dad to brush his teeth or walk down the block to get a haircut. Sometimes it’s hard to put on a strong face, but I do what I can to help my Mom, who is Dad’s primary caregiver.

From a professional standpoint, I am so thankful my supervisor understands the situation I am going through. When we sat down to talk about changing my work schedule, I found out she was also a long-distance caregiver who traveled to take care of her mother. She knew I had to start thinking about options immediately. Like a good journalist would do, she brainstormed options, and six months later our strategy was in place. My boss has been absolutely supportive of my need to go back west, having four to five days off and working two and a half days a week. That is very uncommon for very practical reasons of the way journalism works but NBCUniversal has been nothing short of amazing.

Your mother was born in China, and your father in San Francisco’s Chinatown. Have there been difficulties or cultural barriers in finding a support system or talking about the disease?

We are a multigenerational Asian American family, and each of us assimilates differently, just as any American family does in their community, city and social circles. When it comes to the way we handle my father’s diagnosis, each brings individual strengths. More broadly, Asian American and Pacific Islander (AAPI) families like ours take on responsibility of caregiving without thinking twice  – an unwritten and sometimes unspoken practice that family is number one. But interestingly, despite this core family strength, few talk about it, nor share best practices openly. That said, my Dad doesn’t fit the stereotype. He was always open to whatever had to be done when he was sick and the same is true with his Alzheimer’s.

One decision we made as a family was my Mom and Dad’s living situation. Instead of moving because of my childhood home’s dangerous stairs, we decided to remodel their house so my Dad wouldn’t be shocked by a strange living situation which could cause more loss of memory. Instead, we created a stairless ranch level apartment in their tall “Full House” type San Francisco home we all grew up in that would help Mom and Dad’s long-term living needs.

Interestingly, these are not topics we would typically talk about…long-term care, planning ahead…but because my father is so open, we were able to talk about it bluntly.

richardstevenHow has your profession helped you handle your father’s Alzheimer’s?

Taking a plane is second nature to me; it’s like walking out the front door. That is why, despite having the most demanding travel schedule of my siblings, going back once a week to help my parents is not a big deal. And as a journalist, I learned years back that in order to tell good stories I had to emotionally access parts of who I am that I wouldn’t have had to otherwise if I was not a journalist. I feel comfortable asking difficult questions about care facilities, financial planning and other sensitive topics. I don’t want to do it, but we need to.

How did growing up with a close family help you face the challenge of being a caregiver?

We’ve always been a tight-knit extended family. Twice a year, my father’s side of the family would go to the cemetery and burn fake money and leave food for my grandfather, along with his favorites – whiskey and cigars. At Christmas, we would have 90 people together – cousins, aunties and uncles all celebrating the holiday. From road trips à la the “Vacation” movies where we piled into the station wagon to see my Mom’s family in L.A., to gathering for Ching Ming, it was never explicitly said “you have to take care of your family” – it was simply understood. We were close, and we will always be close. It’s just how we are. Caregiving is an extension of that.

What are the tough moments you’ve faced since your father’s diagnosis?

There have been many emotional moments. Most recently my father has lost the ability to shave, and I helped shave him for the first time. He laughed and smiled and thanked me as I cleared his whiskers. As a young man, my father was the one who taught me how to shave my chin. So this latest change was symbolic. And it was saddening. But it was my honor, too. I want to be the one who shaves him every day – but I can’t.

What moments of joy have you found since your father’s diagnosis?

I find moments of joy every time I go home! My Dad is a joyous person, which is much different from his personality before the diagnosis. He was a pastor and couldn’t support the family on his salary, so he became a social worker to have a steady income, but that didn’t pay much either and he wasn’t built emotionally for social work’s noble but trying tasks. He cared too much and was often stressed.

As a social worker, he was forward with people and told them what they had to be prepared for. In a way, he was equipping himself to be the happy embracive person he is today. And there’s the silver lining. He accepts his diagnosis for what it is.

For my own part, I’ve had to accept Dad’s Alzheimer’s diagnosis spiritually and emotionally. There was a time when I would describe being with him like watching my father die in front of me. Now I see him being born again in front of me. Life is a stack of pancakes, and Alzheimer’s takes the top pancakes little by little until you’re left with none. But through this process, my father has shown me another side. He hugs me and kisses me and tells me that he loves me over and over again. This is the person he always was who I’m only now getting to know.

Your mom is your father’s primary caregiver. What has her experience been like, and what have you drawn from her strength?

Mom talks to one of her good friends whose husband also has Alzheimer’s. She also talks to some of her other close church friends who are also caregivers every couple of weeks. She has a support system but despite that, I know this road hasn’t been easy for her. In moments when she’s alone with my Dad and I am in the other room, I can hear the frustration of a person who had been steely, personable, forthright and honest her entire life. She comes from a golden generation of exceptional values, but I can sometimes see the crack in her armor.

I listen to and look at the other women (who I call aunts) that my Mom gets support from. The commitment they’ve all made is exceptional, without a squeak or a squawk. I wish I could draw just a little bit of that attitude and energy into my life and do something to the degree they do—it’s amazing.

When I am at home in San Francisco, I sometimes hear Mom speak to Dad in certain ways and I tell her that he won’t understand. What she has said is too much; it’s too complex. “No, no no….if I say it to him, he will listen,” she says with her endless amount of hope. And sure enough — sometimes he does. She doesn’t give up. She is a hidden hero. All caregivers are.

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Richard Verdi, David Hyde Pierce & Richard Lui at the 2016 New York City Walk.

About Richard Lui: Richard Lui has had an illustrious career that has included roles in marketing, strategy and technology. Today Richard is a journalist and news anchor for MSNBC and NBC News and is known for his humanitarian charity work. He served as emcee for the 2016 New York City Walk to End Alzheimer’s.

 

Nov 102016
 

2016 marks the 5th year I have walked in Walk to End Alzheimer’s. This year, I was lucky to walk with friends and family, but there is one person I wish could walk with me – and I simultaneously realize that if she was here, I wouldn’t have the same compelling reason to walk. That person is my mom.

alexmag

When I was 15, my mom was diagnosed with early-onset Alzheimer’s at the age of 50.

The once bold and fiercely independent woman I knew quickly became a stranger to me. At first it was the little things, like forgetting to pick me up from school, or getting confused on a drive home from the airport. Then one day when I was 16, she looked me in the eye and asked: “What’s your name again?”

The day of my graduation, my mom refused to get ready, insisting that the clothing my dad had laid out for her was “for children.” At the last minute, she changed her mind and decided to join us. On our way home, we decided to stop to get some dessert to celebrate. As we made our way to the table to sit down, my mom started yelling at my dad: “I’m not going with him! He hits me! I am not going with him!” A moment of silence followed as we decided what to do.

alexmomWith Alzheimer’s, there is this inclination to hold onto what is “normal.”

That night after graduation and all throughout my mom’s fight with Alzheimer’s, my family and I fought the battle of how to maintain “normalcy.” That night, normalcy was having dessert with my family, because if my mom could make it through dessert, then maybe things would be okay. We could do what “normal” families do. Unfortunately, there is nothing normal about what Alzheimer’s does to a person.

We didn’t have dessert that night. 

My family could feel the eyes of the restaurant guests on us as my mom continued to yell out, and all we could do was smile a little with tears in our eyes as we reassured her: “It’s okay. We’re going to home, and it will be okay.”

On October 3, 2011, my mom passed away.

After her 10-year battle, she finally got to rest. Although I can’t change the fact that my mom isn’t here  –  and I can’t help but be glad that she’s no longer in pain or scared – I refuse to accept that her fight is over. I am now the one who has to fight. One way I choose to fight is by walking to raise money and awareness for Alzheimer’s research.

So why do I fight? Why do I walk each year, and look forward to future Walks?

I walk in honor and memory of my mom. I walk because I don’t want to have to walk for my friends…and I don’t want them to have to walk for me.

alexwithfriendsI also walk because I long to see the first survivor at a future Walk to End Alzheimer’s. Although I feel energized as I meet other people who are as committed to eliminating Alzheimer’s as I am, I wish we didn’t even have to think about Alzheimer’s as a threat.

The only way we’re going to get there is if we continue to raise money and awareness to end Alzheimer’s for good – and keep fighting. This year’s Chicago Walk is over, but I’ll be back next year; I will keep walking, and I hope you will too.

About the Author:  Together with her family and friends, Alexandra Magiera participated in Walk to End Alzheimer’s in Chicago, Illinois. You can visit Alexandra’s Walk page here.

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Oct 212016
 

I was 15 years old when I found out my grandmother was diagnosed with Alzheimer’s disease. I had heard of it. I knew about it from friends who had grandparents who suffered through it (and I’d seen The Notebook a million times), but nothing can ever prepare you for what comes after the diagnosis.01_katie-blog

I tried to convince myself over and over that she would suffer less because there would come a point that she would no longer know that she was sick. But I didn’t realize that she would always suffer. She would suffer in the confusion of not knowing who she was around. She would suffer in the times where she would no longer know how to feed herself, bathe herself, or even walk by herself.  And as her family, we would suffer watching the matriarch of our family, someone who was always so strong and who took care of everyone, fade before our eyes.

My grandmother gave Alzheimer’s quite the fight. She never let it dim her light. No matter how bad the day was, she always found a way to smile, and made the rest of us smile around her. However it was always difficult. I moved away to California to pursue my dreams at 17, which is what she wanted for me, but I couldn’t get over the fact that I wouldn’t be there for her as she progressed in the disease. I called her every day, FaceTimed with her and came home as often as I could. The heartbreak set in every time I left home, because I never knew if that was the last time I would see her again. And every time I said “I love you” to her in the last few years, my mom would have to tell her to, “Say I love you, too.”

The last time I saw my grandmother was during Christmas break of 2014. I don’t know why, but I had an overwhelming feeling that that would be the last time. I went up to her room where she sat in her chair most of the time, and I knelt beside her and held onto her hands. I knew at this point the disease had taken hold of her so much that I could literally say anything to her and it wouldn’t confuse her or necessarily register. So I sat there and said my final goodbye.

I thanked her for shaping me into the woman I am today, for her never-ending love, for her support, and I told her she would always be my angel. I looked at her and said, “I love you Vovo.”  She smiled at me, and without anyone telling her to, and without hesitation she said, “I love you, too.” In that moment I knew I had to let her go, and I promised her that I would do all that I could to find a cure.02_katie-blog

I lost my grandmother, my best friend, on April 2, 2015. Alzheimer’s may have taken her mind and her strength, but it could never take away her love, her kindness and her beautiful heart. Life is about creating ever-lasting memories, and my wish for the world is that we all are able to remember those memories when it’s our time to leave this earth. I will spend the rest of my life trying to help find a cure.

 

About the Author: Katie Stevens is an actress and singer best known for starring in MTV’s scripted series “Faking It.” She is an Alzheimer’s Association celebrity champion, working to raise awareness for the cause in honor of her grandmother who she lost to the disease. Katie also serves on the Hilarity for Charity committee. 

Coming Soon: Read Katie’s mom’s piece, Remembering Mom: A Daughter’s Story.

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Oct 202016
 
sunsetjamaica

My wife Kim and I in Jamaica.

In 2015, I was diagnosed with younger-onset Alzheimer’s disease. My father, 85, and the youngest of 10, is living with Alzheimer’s, as well as one of his brothers. Their father also had the disease.

Still fresh in my mind is an early incident at my grandparent’s home. My grandmother was trying to tell my grandfather where the closet was so that he could hang his coat, as he had done so many times before. He was standing right in front of the closet, but couldn’t seem to find it. I recall her looking at me, saying, “He’s confused, honey.”  At that time I had no idea how he could have been possibly confused. That event, more than 45 years ago, left an indelible mark in my memory that resonates today as I live my daily life with Alzheimer’s.

My parents and daughter packing goody bags for the kids of the Palm Grove church.

My parents and daughter packing goody bags for the kids of the Palm Grove church.

My faith helps me approach each day with hope. Almost every morning I stand in the shower and I say to myself, “I won’t be here forever, but I’m here now, so I need to live and advocate today.” I know that God has my back.  I’ve always been a doer and God has given me another opportunity to glorify him, as I know I have been prepared for this journey.

familydinner

In Ocean City with daughters Aubreigh & Erin, my wife Kim, son Michael &  his girlfriend Joanna.

 

 

 

My wife Kim is amazing, and her compassion and faith are exceptional.  She has stood by me 100 percent through this entire experience.  As soon as I was diagnosed, she began researching the disease and joined a care partner support group through the Delaware Valley chapter of the Alzheimer’s Association. We are an eHarmony success story, married 10 years now! This is the second marriage for both of us and blending our families over the last decade has been both challenging and rewarding.  We credit the success of our marriage to our strong faith.  We know that we could not navigate the complexities of this illness without God to sustain us.

My mom is my dad’s caregiver. Kim and my mom drive us to our appointments, as we’re both unable to drive. They share the belief that Alzheimer’s is nothing to be ashamed of.  It’s not contagious and it does not define who a person is. They advocate for us and support us every step of the way.

jerseycitywalk

At the Jersey City Walk to End Alzheimer’s.

Although my dad can’t lead a very active lifestyle due to a stroke, he loves to tell stories about his family and his time serving our country during the Korean conflict. It may be challenging to pull everyone together for family activities these days, but we get together as much as possible.  We spend a week every year in Ocean City and go on camping trips.  We are also very involved with our church; Kim and I have been working for many years as missionaries to a children’s church in Jamaica.

In addition to her monthly caregiver support group, Kim attends state advocacy meetings and is my main source of support at the Walk to End Alzheimer’s where I have spoken on behalf of others living with Alzheimer’s at the promise garden ceremonies. She does so much for me and I try to show her gratitude all the time. I recently surprised her with a weekend to a cozy bed and breakfast in Lancaster, Penn., to enjoy the autumn colors!

palmgrovechurch

At the church where we do missionary work.

I often think that it’s the family members and caregivers that struggle more than the person with the disease. I know the job of a care partner or caregiver is very challenging and can so often go unrewarded or underappreciated, so I make sure to thank Kim for the things she does for me on an everyday basis.

Kim and Mom, and all care partners and caregivers: I know your job is not easy.  Seeing your loved ones change in such a drastic way, the promise of a long life together seemingly dashed with the diagnosis—I know it’s difficult.  You have to do everything in your power to maintain what control you do have over the situation.  For myself, and for some of those with an Alzheimer’s diagnosis who have become incapable of expressing our emotions – thank you from the depths of our hearts.

Our hearts are still beating.  We’re still here, we still love.  Thank you for loving me … thank you for loving us.

About the Author: Jeff Borghoff is raising awareness of Alzheimer’s disease as a member of the Alzheimer’s Association 2016 National Early-Stage Advisory Group (ESAG).

Oct 132016
 

When my mother was diagnosed with Alzheimer’s disease, I was a healthcare professional working in assisted living. I didn’t have much personal experience with dementia or first-hand knowledge of what it would be like to walk with someone on this journey. Suddenly, it became my mother’s journey and, eventually, my story as well.sheila-1

My sisters and I bought every book we could find about this terrible disease. “You read these three, I’ll read these four.” We felt desperate to learn as much as we could to help our mother. The books, along with the Alzheimer’s Association’s website and blog, were so helpful to us! I remember reading about the stages of the disease, and I could see my mother’s path in front of me.

That path led us to Walk to End Alzheimer’s. How wonderful to have an actual event to share with others on this journey! Whether you’re a person living with Alzheimer’s or family members representing and supporting loved ones, Walk is a place where you connect with people who truly understand the challenge and heartbreak of this disease. You feel less alone when you realize you aren’t the only one fighting this battle. True strength in numbers!

In 2010, my sister, Pam Lindsey, and I gladly volunteered to be on the publicity committee for Walk and the annual fundraising banquet. Pam documented Walk in a special video, as well as a song that I wrote for my mother and performed at the banquet. We felt it was a special way to honor her and all the other families struggling with Alzheimer’s.

After going on this journey with my mother, I knew I wanted to help others who were on this same daunting path. I was grateful for the opportunity to come to work at Brookdale Senior Living’s Belle Meade location, where a true continuum of care for those with dementia is available. I’ve now joined my co-workers as part of Brookdale Senior Living’s National Walk team. I’m very proud to be part of a company that is so involved with a great cause.

sheila-2It’s both exciting and comforting to attend an event that renews everyone’s passion for this rapidly growing cause. Every day I remember the devastation that Alzheimer’s disease has brought to my family in losing my mother, grandmother, mother-in-law and her mother as well. I am grateful to the Alzheimer’s Association for all they do to help so many.

I know my mother would be happy to know that our story helps others. I have her photo on my desk so that those I help can see the woman who inspires me to do this every day. I lead two monthly support groups to help families deal with the loss, grief and unmerited guilt that comes when they realize that they can no longer care for their loved one at home. I try to help them understand that in getting professional help, they are not doing this to their beloved, but for them. For those fighting Alzheimer’s disease, there is still a life to be lived while focusing on what they still can do, instead of what they can’t.

As I remember my mother’s battle with Alzheimer’s, I remember her courage, strength and bravery which set my life on a path I could have never imagined. That path is to help as many families who struggle with the disease as I can. Her fight continues through me.

About the Author:  Sheila Uselton is the director of sales and marketing at Brookdale Belle Meade in Nashville, TN. Walk to End Alzheimer’s – Nashville is on October 15.

Oct 112016
 

“Come on, Carlen,” Martha said. “Let’s get out there now!” My wife was anxious to see two of her paintings on exhibit in an art show on St. Pete Beach.

Martha scurried straight to her paintings when we walked through the door that Friday.

art

One of the pictures that Martha exhibited, a self-portrait. It hangs in our living room, where I’ve seen it thousands of times.

“Look, here they are,” she said, grabbing my hand. You’d think there were no other paintings in this show, I thought as I smiled. She beamed as she looked at them and then she showed me their price tags: $200 each. We returned Sunday afternoon to see if the paintings had sold. They had not, but that didn’t matter.

Eighteen months earlier, Martha had been diagnosed with Alzheimer’s. My wife was a confident woman. She’d served on the St. Petersburg City Council, run for the Florida Legislature and was active in other civic and political affairs—all while being the mother of three.

But after her Alzheimer’s diagnosis, Martha’s confidence plunged to a depth I hadn’t seen. That was September 1997, just three weeks after she turned 50.

As Martha’s despondency dropped to a low ebb, our sister-in-law KK encouraged Martha to take a watercolor class together. This should be interesting, I remember thinking. She had never shown an interest in quiet hobbies like art. Martha liked action—dancing, tennis, singing, hiking and talking smack.

So I was surprised – stunned, really – when Martha said yes to taking the class. I think she agreed because she loved KK, and anyone who knew KK knew she could be persuasive. They started going to a watercolor class once a week at the St. Petersburg Art Center.

Her teacher Judi would hand Martha a sketch to paint, and Martha began to do so with such a complexity and boldness of color that reflected a dimension I had never seen in her before. I had no idea where that came from.

Neither did Judi, who pulled me aside one day. “Carlen, this can’t be taught,” she said of Martha’s use of color.

Martha painted scores of pictures large and small—turtles and fish in an orange-and-green sea; a multi-colored zebra; a blue-faced hippo walking atop an orange-and-yellow rainbow. You can see these and other paintings here.

What a delight to see this talent unfold out of a dark and scary place. Most of all, it was a joy to see Martha’s confidence surge.

As much as I enjoyed Martha’s artwork, I enjoyed hearing her talk about each piece even more, and seeing the glow in her face when she completed one. The lethargy so common with Alzheimer’s just melted away.

maddux

Our family in 1987, a decade before Martha’s diagnosis.

I remember Martha talking on the phone with our daughter Rachel, who was away at college. She was describing the art show, and was so excited and fluent. What a change.

And then, as quickly and quietly as they had emerged, after two years or so of painting, Martha’s desire and talent evaporated away. If it were only possible to bottle this confidence, I thought, as Martha’s mind slipped away to an unknown place.

A friend once told me to look for the little things that emerge and to be thankful for them. That was good advice, but it sure is hard to follow when you’re deep in a crisis like Alzheimer’s. Nonetheless, the memories of those two years of Martha and her art are warmly engraved in my heart.

About the Author: Carlen Maddux wrote a book about his family’s 17-year journey through Alzheimer’s. Just released, it’s titled: A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s. Carlen also launched a blog in September 2015, which can be found at www.carlenmaddux.com.   

 

 

 

Oct 072016
 

“We have a great opportunity,” said Ruth Gay, our chapter’s chief public policy officer, reaching me at San Francisco International Airport early on September 29 as I was about to board a flight to New York.  “It’s a real long shot,” she explained, “but as an AIM member and volunteer advocate, would you like an opportunity to ask a question about Alzheimer’s disease at the next presidential debate?”

“Absolutely!” I replied, “What do you need me to do and when?”

“Can you possibly get something posted in the next 30 minutes?” Ruth said. “I’ll send you some ideas and a link to the Open Debate Coalition website.”

Standing in line, juggling my luggage, I managed to type this question into my mobile phone, editing on the fly to comply with the 80-character limit:  What’s your plan to tackle the large public health crisis:  Alzheimer’s disease? As a supporting statement, which couldn’t exceed 200 characters, I wrote: An estimated 5.4 million Americans are living with Alzheimer’s disease.  Our nation’s most expensive disease, it is the leading cause of death in US without any known prevention, treatments or cure. 

I pressed send, confirmed the posting and tweeted a link just before boarding. By the time my plane landed, we were at 1,500 votes. I emailed our Chapter Board and staff, asking them to vote and activate their networks. And then my focus turned to spending three wonderful days in New York.

But early Sunday morning, October 2, I received an email from the Open Debate Coalition, advising that our question was now in the top 50 and asking:

  1. Would I be willing to talk to a reporter about the Open Debate process, the content of my question, and my personal connection to it?
  1. Would I send a simple video, shot from my phone, of me asking the question for “the candidates — and America! — to see the actual people who asked these questions”?
  1. If the opportunity presented itself would I be willing to attend in person?

I immediately answered yes to all the above, and forwarded the video (shot by my husband) to the Coalition.

In the meantime, the Alzheimer’s Association legislative advocacy team and Alzheimer’s Impact Movement (AIM) staff started engaging social media to mobilize our advocates across the country. Our question began rising in the rankings: number 33 out of 9,000 by October 4 in the morning, number 30 by midday. The e-News alert went out on October 5 and we received more than 500 votes in less than 20 minutes. Our question jumped to number 23, and by late afternoon had reached number 15, now of more than 10,000 questions. When we awoke on Thursday, October 6, our question was in the top 10, and had climbed to number nine out of 12,000 questions by the end of the day.

It was a giddy feeling — to think we’d have the chance to reach more than 80 million people about the need to end Alzheimer’s disease!  My mobile phone was at my side every moment, just to be sure I didn’t miss a call from the Coalition.

By Friday morning, with the debate less than three days away, our question had slipped a bit in the rankings but is still growing in support. Organizers have said the Top 30 will be considered and with some questions on duplicate topics, I’m still feeling optimistic about our chances. And I’m not done growing support for our question as we head into the final days of voting.

On Sunday night, I’ll join tens of millions of Americans watching the debate. Of course I’m hoping our question will be included, or at least that the candidates will mention Alzheimer’s disease on their own initiative, now that so many people have shown how much they care about this issue. But regardless of the outcome, it’s been exciting to see our network of advocates mobilize around this special opportunity to raise Alzheimer’s awareness. Many thanks to everyone who voted for our question and spread the word. It gives me even more confidence that together we will end Alzheimer’s!img_1798

To vote for Karen’s question, please visit: bit.ly/Ask4ALZ

About the Author: Karen Stevenson is the board chair of the Northern California & Northern Nevada chapter of the Alzheimer’s Association.

 

Sep 292016
 

The memories of our grandmothers – and the urgent need to protect our own parents from this disease – propelled our family to join the Alzheimer’s Association in Walk to End Alzheimer’s. We walk because it is our greatest hope that, in the near future, no one else will have to experience this disease the way our family has.grandma-and-nanny

Our family grew up on Staten Island, New York. Surrounded by grandparents, aunts, uncles and cousins, we were lucky to live no more than a few blocks away from any given family member. This also meant that both of our grandmothers were very often at the dinner table with us.

When Grandma and Nanny were both diagnosed with Alzheimer’s and dementia and their presence at those meals became the after-dinner trip to the nursing home, our family began to experience what so many describe as “the long goodbye.”

For a few years after Nanny and Grandma entered nursing homes, we were able to bring them home for Sunday dinners, holidays, birthdays and anniversaries. We were just happy to have them close to us, spending precious moments together. But as the years went on and the disease progressed in each of them, removing Nanny and Grandma from their familiar day-to-day routine became detrimental to their well-being. It became increasingly clear that the women we loved and missed were with us physically, but perhaps no longer in spirit.


img_0859-1We did not despair, however. We shifted gears. Every celebration now began or ended with a visit to the nursing home.

Some of our most precious moments – both joyful and heartbreaking – happened there. Kate told Nanny about her engagement and saw a glimmer of recognition in her eyes; Paula sat with our mother as Grandma took her last breath; and our entire family surrounded our Nanny as she left us behind.grandma-and-horse

It has been almost three years since we lost our Grandma and under a year since we lost our Nanny.

While we felt the pain of their loss deeply, no one felt it more acutely than our parents, aunts and uncles.  We will never forget their daily dedication to their mothers, the profound sadness when their parent could no longer speak their name or the unbelievable joy when our Grandma or Nanny said a few words, held their hand and knew who they were.

It felt like our family had reached the end our long goodbye, but then we began to worry about the future, to the time when our parents, once the caregivers, might become the next diagnosed. That is why we walk. We walk for hope and for one more happy memory. We walk for Nanny and Grandma, our parents and millions of other families. We walk so that we will see a day without Alzheimer’s.

About the Authors: Kate Satin, Paula Caruselle and Paul Caruselle are siblings who lost their maternal grandmother Betty (“Grandma”) and paternal grandmother Anna Maria (“Nanny”) to Alzheimer’s disease. Along with Kate’s husband Russell, they are walking in Walk to End Alzheimer’s in Manhattan on October 29. View the Caruselle team page here.

 

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