June is Alzheimer’s & Brain Awareness Month
If you didn’t have the chance to listen to this week’s “Experience Talks,” you can hear it now on our Experience Talks website’s Listen Page. Dr. Connie Corley talks with Gary Glazner, Founder and Executive Director of the Alzheimer’s Poetry Project.
_________________________________________________
“Experience Talks” host/producer Dr. Connie Corley attended the Alzheimer’s Association Advocacy Forum on March 23-25 in Washington, D.C., as part of the LA Chapter of the Alzheimer’s Association “District-Forum-District” representatives. (DFD) is a premier program for Advocacy Forum attendees designed to maximize the impact of their Forum visits on Capitol Hill. By meeting with members of Congress and/or their staff in local, congressional district offices before and after the Forum, advocates will amplify the message that Alzheimer’s disease must be a national priority, as well as hold congressional leaders accountable. DFD participants are leaders in year-round advocacy and will receive special recognition at the Advocacy Forum.
Connie’s letter of testimony – a very personal story from the point of view both a professional in the field of Gerontology and a long distance caregiver to her mother, Dolores – has been included in the Congressional Record.
Testimony for the United States Senate Special Committee on Aging
“The Fight Against Alzheimer’s Disease:
Are We on Track to a Treatment by 2025?”
Held 3/25/15
Submitted by Connie Corley, MSW, MA, Ph.D. on 4/1/15
It’s an amazing time to be alive! Longevity is at its peak and for many diseases and illnesses there are treatments and, for some, even cures. But not for Alzheimer’s Disease. There is no cure, only a few drugs that slow memory loss, and no definitive way to diagnose it other than autopsy. Unlike other major causes of death, the toll that Alzheimer’s Disease takes continues to climb. Unlike other major causes of death, federal funding for research is in the millions of dollars each year rather than the billions. And unlike other major causes of death, many who have it are never told even when the diagnosis is almost certain and, saddest of all, many with Alzheimer’s Disease are not even given the simplest of evaluations by a doctor or other professionals.
One screening test has a question asking who is the President of the United States. The United States: a country in which many of its residents take pride. I am one of them, and I am also sharing my story of long-distance caring for a parent with Alzheimer’s Disease and being the designated advocate in a family with 4 Boomer-generation siblings. And I am a gerontologist, a career I chose nearly 40 years ago after first hearing the term ‘gerontology’ my first week of graduate school at the University of Michigan. I wanted to become an expert in the study of aging.
In spite of all the rich opportunities to learn about, teach about, and research aging, now that I am 60 and eligible for Older Americans Act services, I worry about my own aging and the future of our country as a disease like Alzheimer’s takes its toll on so many people in so many ways. As I write this, I’m awake very early due to jet lag from one of my frequent trips across several time zones (my mother with dementia lives in St. Louis), but this trip was more than worth it. I came to Washington, DC to join over 1,000 advocates from all 50 states to spend a day at Capitol Hill, meeting with Congressional staff members, and to be present at a compelling Senate Hearing related to the status of Alzheimer’s Disease in the next 10 years.
By 2025 I will be 70. I hope to keep my current job until then and receive the maximum benefits from Social Security…. and I hope to be healthy. But the journey from Los Angeles to St. Louis every 8 – 10 weeks takes its toll, and I hope that the HOPE for Alzheimer’s Act recently re-introduced in Congress with bipartisan support will help families like mine navigate the complex maze of care by mandating professionals to be educated about Alzheimer’s Disease and to coordinate care.
Let me give you a very recent example about how both education and coordination would have been of great value for my family. My mother’s eye doctor saw her a few weeks ago after her many complaints about her vision were not resolved by yet another pair of glasses. In spite of having cataract surgery and a procedure for glaucoma that was only partially successful last summer, she still needed glasses but no other treatments, or so we thought. But her doctor said to me, and I quote, “She’s 90 years old and going to die soon anyway, so treating her glaucoma doesn’t really matter.” I was stunned! I told the doctor that longevity runs in her family, and that her father lived to be 94 and multiple older siblings lived into their 80s and 90s. When informing him that her family doctor referred us to a university-based eye institute he said skeptically and scornfully, “You’re getting a second opinion?” When I said we thought we might learn about some rehabilitation services there and I was letting him know so he could expect to be asked for his records he stated, “I don’t need to send records. I told you everything they would need to know. Besides, I’ve been seeing her for a long time! Ever since….well…. 2011….”
Hanging up from this phone call made we want to hang up on being a professional in the field of aging. Not because I don’t want to continue to advocate for my mother or the many other elders undervalued in contemporary society, but because I felt like a failure and unable to do enough to help my mother, let alone my country. But the power in numbers brought me to Washington, and the power of words brings me to write this testimony. Yes, I am a professional in the field of aging and I have taught advocacy and I am not giving up. I just wish I could sleep better at night and not wake up too early most mornings, wondering if my mother will fall because she can’t see well and have to endure being cared for in a facility where typically staff are woefully undereducated. And I hope that things will be better for me someday if I too will lose my ability to remember when I went to bed or what I just ate or what medicine I need to take.
Just a few more things to share that might help paint the picture of what a caregiver like me is facing. Just a year ago, thanks to the help of a non-profit organization in St. Louis offering free home assessments called Memory Home Care Solutions, our family was finally able to get Meals on Wheels for my mother. It turns out that my unanswered phone calls to help set this up over the course of many weeks was due to the fact that the sponsoring agency of this home-delivered meal service (made possible through federal funding) would not return my phone calls because I had a long distance number!
Here’s another challenge our family faced, in this case when we tried using institutional placement: a staff member at the assisted living memory care home was about to put the wrong drops in my mother’s eye that had not yet had the cataract/glaucoma surgery, just days after the first eye operation. I learned about the importance of being vigilant, even when trusting the care of a loved one to a facility, because family members become the extra eyes that the security cameras don’t record. So the night before I was heading back home I had to stay up late to work with my siblings on a plan for my mother to return home and help piece together the care she would need for getting 4 sets of eye drops a day for a month. A plan that would continue after the second eye surgery and indefinitely thereafter since my mother’s ability to dress herself and get regular meals now required daily monitoring.
On the bright side for me is the fact that I have a job with state disability insurance that would allow me to take paid leave for caregiving after my vacation and sick leave is used up. Ironically, I left a tenured state university position that did not have this insurance, and took a faculty position without tenure that gives me the flexibility to work online. So my office is right at hand when I’m traveling for my caregiving career. At the same time, I worry that if I take too much time away from my work, it will take too long to get back to a full workload when my leave runs out so I choose to sleep less and work more while doing my best as a caregiver. In my work I meet so many wonderful students and maintain decades-long relationships with professionals who, like me, have a passion for elders. I want to continue this work and in coming to Washington for the Alzheimer’s Forum, I knew that my voice was important and wanted to show my students and family the power of advocacy in action.
While there is much more I could say, I am grateful to be able to share a sliver of my story. As I write this I also want to note that like many caregivers with a family member who has dementia, the woeful tales of insensitive professionals and the nights of imperfect sleep are not a new experience. Over a decade ago these same experiences were part of my daily life as a single parent taking care of a teen with mental illness. So I have learned a lot and to quote myself at the bedside of my father (who was my mother’s primary caregiver until he died 15 months ago from a recurrence of lymphoma): “What I have learned in love, I will teach in life.” Ralph Corley was a World War II Purple Heart veteran who survived the bombing of his ship in the Pacific arena at the age of 17. If he could help care for my mother 70 years later until his health left him unable to do so, then I hope that I can continue to care for others as a family member, a teacher and also do my best to care for myself. I have felt the love of the 1,000 plus this past week, and I am grateful for people like Verna Jones-Rodwell, the Chair of the 2015 Alzheimer’s Association Advocacy Forum (former Maryland state representative) who asked me, “What are you doing to take care of yourself?” Now in such love, I hope to teach from my story and enhance my expertise — all of it from my heart and, so far, from a functioning mind.
