9,999,999 Kindred Spirits

Richard Taylor, a retired psychologist, was diagnosed with Alzheimer’s-type dementia in 2001 at the age of 58. Now 67, he is a champion for individuals with early-stage and early-onset Alzheimer’s disease, and author of the book "Alzheimer’s from the Inside Out" (Health Professions Press, 2006).

The following plea by Dr. Taylor expresses what we at Ecumen believe in most strongly — empowering our residents with Alzheimer’s and other forms of dementia to live life as fully as possible. That’s why we’re embarking on a groundbreaking initiative at all of our skilled nursing centers to free these individuals from any and all unnecessary medications that are sadly, typically, prescribed to "calm" the most disturbing symptoms of dementia.

"Awakenings" is supported by a grant from the State of Minnesota, and we’ll be asking for support from our friends in the community as well. Expect to hear from us in the coming months as we roll-out our campaign to end the unnecessary "chemical restraints" imposed upon dementia patients through the administration of antipsychotic medications. We can all be part of the next generation of respect for people living with dementia, and in honoring them, restoring their dignity.

Oh woe is me. Oh woe are 9,999,999 kindred spirits. Woe is the life of tens of millions of caregivers and those who know someone living with the symptoms of dementia. Oh woe is our plight, oh woe is our Nation. Like our pioneer ancestors we are all responsible for taking care of ourselves. We are each responsible for living purposeful, productive, loving lives. And for those with disabilities not of their own causing? "light at the end of the tunnel, great progress, breakthroughs?" I sadly think not. 

When will we each and all stand up and speak out. Enough of this hoping/exaggerating/wishing/pretending. Let’s put most of our research money where the real problems are – living with the symptoms of dementia and caring for folks living with the symptoms of dementia. For every one’s sake, stand up and speak out. Vote with your donations, your political support, your discussions around the ipods/watercoolers/skype video calls/under the tables texting at work/in your church and community. 

We don’t have the luxury of waiting for physicians to be retrained, assisted living communities to grow up, nursing homes to realize more than that their residents are there because it’s the only place Medicare pays the bill for room and board for people with dementia. We can no longer hope/pray/expect that the experts and current organizations and leaders will get "it." At least they won’t get "it" in yours or my lifetime, and there are no current signs they will get "it" in the lifetimes of your children or grandchildren. Stand Up. Speak Out.