As we near the end of National Alzheimer's Awareness Month, we want to remind you of the beauty that still lives deep in those who are fighting the disease. Take a quick break from your day and check out these two videos below:
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Co-written by Milly and Jenny, mother and daughter co-founders of Live Wright Society September is World Alzheimer’s Month - and international campaign to raise awareness and challenge the stigma that surrounds dementia. September 2020 will mark the 9th World Alzheimer’s Month. Today, September 21st is World Alzheimer’s Day. JENNY: The thing that really gets me about Gene dying from Alzheimer’s, is not the awkward (and even lack of) condolences my mother received, but that no one really knows what she went through before he did. On the whole, no one really knows how to detect the early signs of Alzheimer’s. It can be especially hard to identify when there are other medical issues involved. For so long, Gene had ulcerative colitis and depression, which on the surface seemed like the cause of his defensive behavior and increasingly bad temper. But they were the marks of late onset dementia. And even if you are able to detect those signs, no one knows that when you have a history of dementia in your family line, you should get checked by a neurologist and not a general practitioner. Because the former might be able to help slow down the process of rapidly shrinking brain cells, or in the very least help educate the family better so they don’t become more overwhelmed about the caretaking process. And when the disease hits you all of a sudden, no one knows that after a lifetime of hard work and saving and investing your money, you are only allowed to keep a grand total of $8,000 in your bank account. Any more than that and you won’t qualify for Medicaid, which is the only option many people have, including my mother who was left paying for Gene’s nursing home, which cost a minimum of $6,000 a month. A MONTH. No one knows that in order to get to that $8,000 balance, you have to spend your money down. Which means you have no choice but to instantly dwindle your entire life savings to almost nothing - you cannot give the money away, you cannot create a scholarship, you cannot hide it. You cannot even give it to your wife, who is still alive and thriving, and going to be left behind in your wake of forgotten memories. And you have to prove in a paper trail that for the past five years you have been compliant, when five years ago, you didn’t even know you would have to obey these government rules because you didn’t know you would tank so quickly and would have to go to an egregiously expensive Assisted Living care facility because you would no longer be able to take care of yourself, much less remember your family. No one knows that my mother Milly, at age 70, had to give up our puppy Monkey and three beloved cats, and sell our beautiful house along with all of our belongings from 33 years in the States, to random people online and our sweet but probing neighbors, sifting through the piles of treasures and expensive furniture and artwork and books, and buying our proud antiques and memory-filled items for only $3 a piece. We sold the golden chargers that I adored and proudly used every holiday to carry our gold rimmed china plates, and the antique silverware and napkin sets that might just be insignificant decor to you, but really were collected through my summer trips when I flew solo at eight years old, to visit my American designated grandparents in San Diego. That’s when I learned the idea of grace and elegance through table settings, which transformed into a proud ritual before the many dinner parties my mom and I would throw year after year. These were the things of my childhood, my teenage years, the vessels which held the memories that made our life, the measurements of a loving home filled with the security that my mother worked so hard to give us. No one knows that without even blinking, Milly took that measly thousand dollars she made at the garage sale and gave it all to me, the starving entrepreneur who had nowhere else to turn at that time, so that I could let my team of young, privileged and oblivious millennials live to see another month. That thousand dollars represented a very humble barter for the only things my mother could call stable in her life - the beautiful home that she created, where she finally had a little library made of three white bookcases that we carefully picked and curated every item and book for, and the pieces in her home with history in their veins, that she slowly collected and gently took care of with love and hope all through the years. No one knows that after months of spending down, endless lawyer meetings, deciding to create an irrevocable trust and realizing it’s absolutely the wrong thing to do, then changing lawyers - we finally get accepted by Medicaid - only to have Gene pass away one year later. For me, the whole thing was surreal. I felt numb pretty much the entire time, disconnected. I was motionless and emotionless because I was over 7,000 miles away in Shanghai. No matter how much you love someone, if you cannot literally experience what they are going through, you can never truly understand or feel their pain. And I was like that to my own mother and stepfather, because I just wasn’t physically there. And I often look back at that time and am stupefied by my own immobility. If I, the daughter, could not even understand what to do or how to help, I imagine no one outside the family knew what to do either. And it is these moments that are just so unfair. The challenges were too great. The only father figure I had really had for the past 20 something years, was dying of a dark and mysterious enemy. And my heroic mother was silently moving mountains on a daily basis...alone.
I always wonder. What was the actual thing that was forgotten here? Did Alzheimer’s make Gene forget his life and family? Or did Alzheimer’s make the world forget my mother, in her greatest time of need? --- MILLY: My dear daughter. Your writing brought back the cold fact of Gene’s passing. Yes, I lost everything - in a slow and painful fashion, spread across many many months. And then all of a sudden, I became a widow with an uncertain future. I felt like I was destined to be alone in this life. What I went through was unspeakable (yes, without you), and what I am currently experiencing, especially during this pandemic, is the missing piece of human family life. I am speechless about my recent past, and longing for so much more. What you wrote above was what you felt like you lost, but still hold dear in your memories. Yes, I needed you during that hard time, and even in the past 20+ years that you were gone from home - at boarding school, or college, or building your businesses in China. But I also need you right here and right now, to help my next 20 years of life be one filled with spiritual growth, peace and ultimately thriving. That way, one day you will look back and remember what kind of character your mom had, and how she dealt with the massive things life bestowed upon her. And just as close as you keep me in your heart, please keep paying it forward and raising awareness for Alzheimer’s and Dementia. After 32 years of living in the States, I am back in my motherland, China. I had a very special Mother's Day with both my daughter and sister - a mix of my past and future to enrich my present! As I watch Shanghai transform into a truly unique and globally-minded city, I realize just how important it is to me to serve as a cross-cultural, entrepreneurial-spirited role model and Live Wright Society ambassador, in front of my daughter and anyone else who might need me. Love and live, =Milly= Live Wright Society's Art Director, Marion Sheinberg, is displaying her beautiful paintings for the whole month of February, at the Gallery at C. Leslie Smith located in the Cedar Point Shopping Cent at 311 S. Cedar Crest Blvd. Allentown PA. Please stop in to meet Marion in person and hear her fascinating Pay It Forward stories surrounding her art work on Friday, Feb. 24th, 5-8 p.m.! Here is a sneak peek below of what you will see: Sharon Schrantz, freelance journalist and photographer at East Penn Press, was lovely enough to visit us during our first Coloring For Kids event last month at the Live Wright House in Macungie. And then we found a half-page story on us this past week! Thank you so much for the love and recognition. We are about community, and we are proud to have a chance to showcase ours in East Penn. A toast!
The watercolor painting of the twin giraffes has been successfully completed and donated to the Lehigh Valley Zoo! They have valued this 22"x30" masterpiece at $2,000, and will feature it in a live auction this summer at the Zoo. It seems our two long-legged youths have already been initiated into high society ;p A huge thanks to Live Wright Society's very own Art Director, Marion Sheinberg. We are proud to support such a talent in her efforts to help the community. This directly aligns with the LWS mission of paying it forward and raising awareness for good causes. Hope the Masai boys are cozy in their new home in Lehigh Valley. CLICK HERE to print a copy of Marion's Masai giraffes to color on your own time. Did you know that just like snowflakes and human fingerprints, no two giraffes have the same spot pattern? And that they spend most of their lives standing up, sleeping for a maximum of two hours a day, usually only 10 minutes at a time? And because their legs are so long, they walk at 10 miles per hour without even trying? Did you know that a giraffe's blood pressure is twice that of humans? This is necessary to keep blood flowing all the way up its long neck to its head. In fact, their system for regulating blood pressure is so sophisticated that it has been replicated by aeronautical engineers for use in spacesuits. And for all our friends in Allentown, did you know that two boy Masai giraffes from Kansas City Zoo are coming to Lehigh Valley Zoo this August? These two tall drinks of water are causing quite a stir in the Live Wright community. So much so that a local Pennsylvanian artist was inspired to turn them into watercolor: The incredibly talented artist is Marion Sheinberg of Lower Macungie. "As a student of the arts, and a member of the Lehigh Valley Arts Council and the Lehigh Art Alliance, I have the opportunity to volunteer for the arts and display my work for the Lehigh community to view." - MARION SHEINBERG Live Wright Society (LWS) is privileged to introduce Marion as our new, in-house Art Director (welcome to the family!), and she has already initiated her first project. We are honored to bring you: "I can paint. And at first it was just about painting these two Masai giraffes for the zoo. But then I realized it could be so much more - it could be the start of a bigger movement. We can use my painting to bring the whole community together, not only to support getting these majestic creatures to the zoo for everyone's enjoyment, but also to use my art to support Live Wright Society's good causes, specifically Alzheimer's and Dementia. This is something I can do from my heart, to give back and pay it forward. Kids! Adults! Everyone! Get out your coloring books!" - MARION SHEINBERG Galvanized by the summer arrival of the Masai giraffes to Allentown, Shades of Masai leverages the simple act of coloring to bring together all facets of a community and raise awareness for Alzheimer's and Dementia. But what is the symbolism of these animals and their connection to Marion's painting and Alzheimer's/Dementia? First: Animals are calming Animals by nature are non-judgmental, which allows them to serve as very good companions for Alzheimer's/Dementia patients. In fact, they can provide an immense amount of social support and unconditional love. Research shows that people with Alzheimer's/Dementia recognize an animal as friendly and non-threatening, and often display more interactive behaviors when around them. "The kind of obstacles faced by those with dementia include apathy, irritability, restlessness, depression, difficulty engaging in social activities, and risk of loneliness and isolation. Due to the anxiety that social situations can cause in dementia patients, they often avoid social situations altogether, including interacting with family and loved ones. Second: Coloring alleviates stress Color is the most important visual experience for a human being. It is an extremely powerful channel for information and science has found it to play a significant role in enhancing memory performance. Psychiatrists have been prescribing the act of coloring to patients for over 100 years now. And in recent years, adult coloring books have skyrocketed in popularity because we are all searching for familiar ways to relieve our stress, find clarity or even a moment of escape. It is not just a casual pastime for children anymore. Third: Animals + Color = Therapy Many senior living facilities use therapeutic methodologies like coloring and animal interaction to help sooth their residents. In fact, Lehigh Valley Zoo has already taken their animals to visit Alzheimer's/Dementia patients who reside in the Memory Units of places like Country Meadows Retirement Communities. Our goal is to work with facilities like Country Meadows / Above & Beyond / Arden Courts, Alzheimer's Dementia Caregiver support groups like Memory Café by Abington Manor, health care organizations like Lehigh Valley Health Network, free community services like Care Patrol / SarahCare Adult Day Care Center, organizations like the Lehigh Valley Art Council, local schools, libraries and neighborhoods - distribute Marion's giraffe painting as a medium for coloring and individual expression, as well as a therapeutic method people can use to preserve and enhance their own memories and stories, while learning about Alzheimer's/Dementia and how to help those affected by it. * So, whether you have children who could use some calm in their day, or you're searching for a brief break from your own life, or you are just seeking a conversation or a way to get a little clarity - color with us! For whatever reason you might have, color away your stress. Color out your stories. Color alongside those who have lost their memories. Color to help raise awareness. You will benefit from it. And if you color with us, you will also benefit others. At Live Wright, we use coloring internally as a cathartic way to free our minds, to brainstorm amongst friends, and to gently reminisce on the stories and memories that make us who we are. By doing all these things, we often discover surprising answers to our questions and positive solutions for our challenges. Stay tuned and watch this space for when we begin announcing local community coloring activities you can join or support. If you would like to download and print a copy of Marion's Masai giraffes to color on your own time, CLICK HERE. All we ask is that you send us a photo of your finished product to [email protected]!
Action: Raise Awareness and Pay it forward! To all the dear primary caregivers of Alzheimer's & Dementia patients out there, I need your support alongside Live Wright Society's mission by:
* Liking our Facebook page: https://www.facebook.com/LiveWrightSociety * Sharing your emotional stories by e-mailing me privately: [email protected] * Asking questions and sharing your tips by clicking HERE, and I will make sure to get back to you personally. Love & Live, =Milly= Founder, Live Wright Society Every good cause we support at Live Wright Society is tied back to someone we know. The heart of this nonprofit feeds into the fact that most people are more likely to pay it forward when they are doing something good for a loved one or at least someone they know and can relate to. Our organization's very name is in honor of a dear friend of ours, Debbi Wright, who has Multiple Sclerosis, and serves as both a role model and aspirational icon. As we build momentum around educating the community about Alzheimer’s and Dementia, you should know why we chose this cause. Gene McClain, the husband and father to Milly and Jenny, co-founders of Live Wright, was diagnosed a few years ago with late onset Alzheimer's. Alzheimer's is a disease that declines the patient very rapidly, and with every passing day, Gene is plummeting further and further into an existence that is out of his control. While it is certainly a heartbreaking and frustrating sickness for Gene to go through, it is an exponentially more devastating event for his family members, especially Milly. The loved ones of the patient are rarely prepared to navigate the emotional, logistical, legal and financial issues around taking care of someone with Alzheimer's or Dementia. It becomes extraordinarily easy to fall victim to bureaucratic red tape when applying for financing to fund the expensive caregiving options, or figuring out what kind of trust will protect the estate, or even rating the best local adult day cares. Despite her incredibly difficult and movie-like life (read "Letter from the Founder"), those who know Milly describe her as a strong and bright spirit. And she is, because she has the amazing ability to harness her hardships and turn them into sources of motivated action and inner peace. But even an intelligent, loving, bright spirit like Milly is finding herself overwhelmed, alone and constantly running into dead ends. And she imagined that many many others in her situation felt the same way she did. So, Live Wright, with the guidance of Milly, has created a program called THE SERENITY REMEDY (TSR), which leverages both traditional and modern tools to help the family and friends of Alzheimer's and Dementia patients. While we may not be able to provide every single answer to daily practical struggles**, we can help to mend the broken hearts that this type of disease mercilessly leaves in its wake.
**Milly will also be updating this blog with lessons she's learned along the way, in actually dealing with practical struggles, like setting up an irrevocable trust to protect her estate and family assets, applying for Veteran's benefits to subsidize Gene's care, choosing the right personal care and memory care facilities, and much more.
Live Wright Society has the privilege to share the exclusive and innovative talks of the three-day TEDMED 2014 Conference in Washington, D.C. and San Francisco VIA LIVESTREAM in Lower Macungie, Pennsylvania on Saturday, September 13 2014.
We are partnering with FitnFree4Life to host this amazing live stream event. You are probably familiar with TED, the global movement dedicated to “ideas worth spreading.” TED Talks have been viewed online 2 billion times around the world. TEDMED, created by the same founder, is focused exclusively on health and medicine, and is dedicated to bringing together extraordinary people from all walks of life and blending our unique yet complementary ideas and perspectives. TEDMED curates a unique and provocative program featuring brilliant short talks and stunning artistic performances that reframe the way we think and inspire critical new possibilities for the future of health and medicine. Last year, 2,000 Delegates attended TEDMED in person, but more than 200,000 people watched worldwide via TEDMED Live. |
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