My mother died 51 years ago on Labor Day – I was nine years old. Monday night I was telling my kids a little bit about my mother. Her passing still seems surreal. I was so young, and so much was going on that I don’t think I ever had the chance to embrace the full impact of her death. However, when I look back on my childhood, I am fortunate that I remember it as a wonderful time. I had the good fortune of family, friends, and a Jesuit education. It all combined to make that time storybook good.
As I was talking to Casey tonight, I was struck by how real his mother’s passing is to him. My mother’s death was sudden and unexpected, while Casey’s mom, Eadie, suffers from a relentless disease that is consuming her day by day in a devastating decay. I am proud of Casey and Kelly’s determination to provide exceptional care and love for a woman who can not be replaced. Their selfless efforts have given dignity to a woman overwhelmed by an ignominious affliction.
In addition to caring for his mother, Casey has come to recognize the indignity, disregard, and corruption in today’s care-giver ecosystem. He now endeavors to provide a resource for families that are faced with the same challenges that his brother, Whit, and he have faced so courageously and thoughtfully.
Unfortunately, few families have the Hansen resources to provide the kind of exceptional care that Casey’s mom has received. The costs are enormous. Just the professional care-givers cost $300 per day [$110k per year], and that is just the start. The apartment, specialists, emergency room visits, transportation, and general living expenses all add up to at least another $70k per year. What is remarkable about this $180k cost is that in NYC, nursing homes have access to $15k per month [$180k per year] in government funding for the often sub-standard care they provide.
Casey would like to see the government’s money spent better, and, if possible, spent on at-home care. Casey wants to “create a new normal.”
The Forget Me Not Care Foundation is being developed by Casey [and his family and friends] to facilitate dignified and compassionate care for sufferers of a range of debilitating diseases, but mostly for the ever-increasing amount of younger women who suffer from various dementia disorders.
There is a lengthy list of things to do, and if you can lend your support, time, resources, or expertise, Casey and his family would be appreciative.
Things To Do
- Create a business plan.
- Form a 501C not-for-profit organization.
- Define a mission statement.
- Create a Board of Directors.
- Recruit a management team that will work in conjunction with Consilium Global Management [who will be donating their time and resources for the launch of the foundation].
- Develop a fundraising protocol and gameplan.
- Define how the money raised will be spent.
- Establish the activities and resources that the foundation will provide to those in need:
- How to access the best care-givers.
- How to access government funding.
- How to recognize problems with care-givers.
- How to evaluate your options.
- Advice on fiduciary responsibilities.
- Financial advice and assistance.
- Legal advice.
- Ratings for doctors, hospitals, nursing homes, care-givers, etc.
- On open social media forum for families with dementia sufferers.
- A blog with information, stories, updates, opinions, etc.
Of course, thats just the start of a long list of things to do. Casey already has a number of prospects for the Board of Directors, along with the current involvement of Rachel [who is providing his mother with exceptional care] and his brother [who is currently working on a social media video of his mother’s rapid decline].