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.
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.
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.
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.
VISITING GENE AT THE ASSISTED LIVING FACILITY
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?
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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.
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.
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