I sat in the Kansas City airport contemplating the 2018 Alzheimer’s forum, and couldn’t help but think about birthday wishes. For the first time ever, I’ll be visiting with my legislators on my birthday.
I can remember when I was a child, I thought about my birthday wish ahead of time. I don’t recall any earth shattering wishes. I remember homemade birthday cakes with candy pieces spelling out “Happy Birthday” and candleholders made out of the same sugary confection.
With eight kids, birthdays weren’t unusual or cause for a huge celebration. I’ve had a few memorable ones over the years of my life. I think the one that stands out in my mind the most was a camping trip gone haywire. A huge group of the Fisher family was camping at Rhody Lake in Oregon. To make a long story shorter, I slept in the tent with a bunch of kids and one of them peed on me. The next day, my birthday, was miserable. My kids were misbehaving, and I was cranky and out of sorts. No one, not even Jim, acknowledged it was my birthday and, oh, yes, I was feeling sorry for myself and too stubborn to bring it up.
Well, later in the afternoon, as everyone was relaxing around the campfire, suddenly here came my sister-in-law carrying a birthday cake. Everyone started singing, and I started crying when I realized no one had forgotten. They just wanted to surprise me.
Years later, right after we moved into our house, the family decided to have a surprise birthday party for me. Jim clued me in, and I met everyone at the door welcoming them to my “surprise” party.
So, whatever my birthday wishes were in the past, I know for sure what they will be this year. First, and foremost, I wish for a cure for Alzheimer’s. In the meantime, I wish that our legislative asks are met with favor. We have three federal priorities: An increase in Alzheimer’s research funding, the BOLD Act, and PCHETA.
Alzheimer’s is the most expensive disease in America. One in every five Medicare dollars is spent on caring for a person with dementia. The disease is expensive both for the family and the government. The average monthly cost for a person with dementia at the end of life is $4,866. Palliative care reduces that cost to $1,534.
The only solution to negate the expense is to find a cure or effective treatment. This can’t be accomplished without research. We are asking for an increase of $425 million for Alzheimer’s research. The stakes are high in terms of human life and economic savings for families and our country. A treatment that would delay the onset of Alzheimer’s by five years would save $220 billion during that period of time.
The Building Our Largest Dementia Infrastructure for Alzheimer’s Act (BOLD) will create a road map to treating Alzheimer’s like the public health threat that it is. This act creates a public health infrastructure countrywide. Increasing data collection, analysis, and timely reporting will save billions through early diagnosis. Centers of excellence will improve diagnostic procedures and quality of life for our loved ones.
One of the best decisions our family made was to use hospice care for Jim, and my only regret is that we did not use hospice sooner. Hospice provided comfort for Jim and for us as we faced the final days of his life. The Palliative Care and Hospice Education and Training Act (PCHETA) will ensure that end of life care is provided by well-trained workforce. Nearly half of all people with Alzheimer’s depend on hospice care during their final days.
After a few days seeing the sites and catching up with my friends and fellow advocates, we will be ready to roll up our sleeves and get to work. On Tuesday when we go to Capitol Hill, we will be armed with facts and figures, but more importantly we bring our personal experiences and passion to find a cure. Our hearts, wishes, and mission will be for a world without Alzheimer’s, and we are willing to ask, ask, and ask again until there is no longer a need to ask. That is my birthday wish!
Copyright (c) L. S. Fisher June 2018