Many people are impacted by Alzheimer’s and dementia; my story is not much different. I have seen many aspects of this disease. Like cancer, every individual’s case is different and unique. I am honored to be part of an organization where proceeds go towards research to find a cure for a disease that takes so much. It takes moments from people that we love and the memories from the ones they love most.
My grandfather, Peter, was diagnosed six years ago with Alzheimer’s. Whenever I ask him how’s he doing, I get the same response “Am I still here.” He always had the best sense of humor, an arsenal of jokes, and one-liners. He is also my inspiration for playing the bagpipes. While his health has declined steadily, it has become highly noticeable lately that his dementia is prevalent. He is starting to forget everyone he once knew, and I am terrified for the day he won’t remember me.
My brother’s grandmother, Arleen, was never formally diagnosed with Alzheimer’s but had all the signs and symptoms. She was once one of the most incredible people who could light any room. Now, she can no longer recall who people are and can barely speak.
My husband’s grandmother, Patricia, was diagnosed with vascular dementia last year. She recently moved in with us last year, and we are now her full-time caregivers. She used to be on top of everything and was highly organized. Now, she is confused, repeats herself often, and gets extremely frustrated with others. We have our good and bad days, but we take each day at a time.
To watch these three-amazing people turn into a shell of their former selves is the worst thing imaginable, and I wouldn’t wish this pain on anyone. The fight to defeat Alzheimer’s and all forms of dementia is an uphill battle that I am ready to take on. I want to inspire others that there is hope and that you are not alone. It feels like, at times, you are, but thanks to this, the Alzheimer’s Association support brings comfort. I haven’t utilized all the services, such as the hotline, enough, but knowing it is there means the world.
I joined the committee and the walk to give my support in many ways. Raising funds is one way, but giving a voice to those that have lost theirs is just as important. Many loved ones are lost in the fog, and I want to be their voice. Ensure they get the care and support they need during their time of need. It includes the caregivers and family members that sacrifice their time to help their loved ones. Caregivers are on the front line and need the most support.
I am walking to end Alzheimer’s. The walk is an incredible event where you feel positive energy, and everyone is there to support each other. We are all in the fight together to find a cure. There is such powerful healing and hope behind the walk event.
Everything I do is to fight for a world without Alzheimer’s and dementia. My mission is for future generations to only know stories and be spared the pain of watching their loved ones slowly fade away.
This story originally appeared in our blog in 2020. Dr. Jordan is currently volunteering for the Alzheimer’s Association as a support group facilitator for the Women and Men of Faith Support Group, a community educator, and a NEW IDEAS Champion for the NEW IDEAS Study.
I married the love of my life, Robert Andrew Jordan, on July 29, 1962. He was twenty and I was seventeen. Fifty-five years later our story of love and happiness, good times and bad, ups and downs, twists and turns, from poverty to prosperity had enough guiding light that it was turned into a published book “From Suspenders to Stethoscope…The Dr. Jordan Story.” This story was released on June 30, 2017, the day which was the last day of work for my husband, Robert A. Jordan, M.D., the pediatrician, a graduate of Rush Medical College, the first African American Chief Resident at Rush Presbyterian St. Luke’s Hospital, a well known and respected physician who was known for the quality of patient care he gave to thousands of children during his time in practice. He believed that no matter what one’s socioeconomic orientation may be, ethnicity or gender, or religious affiliation – everyone deserved the best of healthcare. Yet this dedicated clinician had been diagnosed with dementia.
It was in January 2014 that I finally came out of denial and came to terms with what was going on with my husband. I shared with our five children as well as Bob’s mother and sisters my fear of what was later confirmed – he had dementia. I became more observant of the changes in his behavior. He would call me from his office two or three times a day to ask how my day was going and I would share with him what I was doing or had done but a few minutes later he would call again, and ask the exact same question. When I would say you just called me and asked me that, he would laugh and say, ‘“Oh I was just kidding.” He was an avid golfer and would golf at least two to three times per week with his buddies or on his off days and special occasions. However, I began to notice his buddies stopped calling to include him in their golf outings. I eventually realized it was probably because he would interrupt the game when he couldn’t find his phone or misplaced his keys, everyone would have to go on the hunt only to find that his keys were in his pocket and/or his phone in the compartment of the golf cart. He stopped being excited about our golfing together. His interest in reading the bible, which he loved to do, diminished.
We were a physician-pastor team and our dialogue with one another about our passions was slowly coming to a halt. I would ask him to stop by the store on his way home from the office to get a loaf of bread, or pick salad fixings and would come with everything but. Around late 2015 his staff started calling me to ask if Dr. Jordan had come home for lunch because it was way past his lunch hour and he had not returned. He once called me to say he had gone to pick up lunch for the staff but he was confused and couldn’t find his way back to the office. He seemed scared and panicky, but I was able to direct him home using landmarks and street signs after about 30 minutes.
I was taking care of my 86-year-old sister who was a double amputee, and he would ask the same questions about her condition over and over. In early 2016 I finally convinced him to let me make him an appointment to see our Primary Care Physician be evaluated for possible memory loss- he wasn’t happy with the suggestion and went hesitantly. My husband was so crafty that he convinced our doctor that nothing was wrong with him, but rather he was preoccupied. When the doctor suggested that he could do a memory loss assessment just to rule out what we suspected, Bob refused. I can remember leaving the office in dismay, frustrated not knowing what to do.
I began to watch his behavior even more closely. His routine of getting up at 7 a.m., showering, getting dressed, making and drinking a cup of coffee, and stopping by McDonald’s to get some oatmeal before going to the office began to change. He started sleeping later and later. His impeccable dress was a little off and it would take him forever to complete the dressing task; he was constantly misplacing his wallet or his phone or his keys. Every morning was a search for something that he had misplaced. When I located the item he would fuss and say “who put it there?”. I notice that his demeanor was changing and he would get irritated often. He started to get up earlier to get ready for work, sometimes as early as 6 a.m. when office hours weren’t until 9 a.m., leaving him to pace back and forth until it was time to leave. He stopped calling his mother, I would have to remind him. He forgot that our daughter’s fiance had flown in from California to ask him for our daughter’s hand in marriage. They had a long wonderful conversation and he gave his blessing. When the day came that she called to say they were on their way to get married, he became angry and claimed he’d never met the man. He began to take longer and longer to come home. As things got progressively worse, my children and I started preparing for Dr. Jordan’s retirement. We found a psychiatrist who convinced him to do a memory loss test and diagnosed him with Alzheimer’s. A second opinion confirmed this diagnosis. He was placed on medication, which he initially refused to take. We reduced his hours at his office, and my oldest daughter immediately pitched in by becoming the office administrator to help prepare for his retirement. He was resistant to retiring but we finally convinced him it was time to enjoy life outside of medicine, he was now 75 years old and God had given him the ability to practice 10 years beyond retirement age.
July 3, 2017, was the first day of retirement for Dr. Jordan. On that day he got up early, got dressed in his suit and tie, put on his lab jacket, and began searching high and low for his stethoscope and car keys. On that day my duties as a caregiver began. Trying to get him to understand that he no longer had to go to work was a daily struggle. He was concerned with how we were going to survive, eat, and pay bills. This question went on all day practically every day. I eventually had to go write out our income sources and put them in his wallet so that he could visually see the numbers and understand for a short period of time that we were going to be alright. We had to move from our home which was now much too big for me to handle and seemed to be a trigger for his unhappiness. Not being able to drive the car that sat in the garage made him angry, and not being able to go to the office to care for the children confused him. I was becoming frustrated, angry, and confused. I hadn’t experienced or known anyone suffering from this disease and had no point of reference. I cried daily. My children insisted that I connect with a support group, so I started with the support group at South Suburban Hospital in Hazelcrest, IL, I then reached out to the Alzheimer’s Association of Illinois. After having attended an Alzheimer’s Association forum at Palos Hospital in Palos, Illinois where I shared my story I was asked if I would be interested in volunteering as a caregiver speaker for the Association and I gladly did so. I also- signed up to become a participant in the Emory University Tele-Savvy Caregiver Program which is a training program for caregivers. I needed to know all there was to know about being an informed caregiver, I knew how to be a wife but now I needed to know as a wife how to be a good caregiver for my husband. I’ve learned that I’m more than a caregiver, I am a clinician for my husband.
This journey has touched my heart so deeply that I now have a need and calling to be an advocate, not just for my husband, but for all who are affected by this disease. My husband as well as all who suffer deserve to be cared for with respect, dignity, honor, and a deeper kind of love. Even though my plans were to care for him at home till death would separate us, my children and I had to make the dreaded decision in October 2019 to place Dr. Robert A. Jordan in a long-term care facility. He had begun to wander off, once having to be found by the police and brought back home. That was the most frightening day of my life. Then he was becoming aggressive toward me, my daughter, and my nephew; he was extremely agitated and depressed. In his new community, he has become very calm and more social with the other residents. I find solace in sharing what I’m learning and experiencing every day.
One key I have learned is that self-care is most important. If I’m not healthy, I can’t see to it that my husband is cared for properly. During the time I was caring for my husband at home, I was anxious, tired, short-fused, crying daily, and suffering sleepless nights. I needed to share my feelings with someone who wouldn’t judge or criticize how I was feeling, so my children encouraged me to see a therapist. This was the best decision I could have made because she help me to work through my feelings of fear and frustration by focusing on self-care. I gave myself permission to enjoy my life through spiritual disciplines, outings with friends, or enjoying free time with recreational activities. I have been blessed with an awesome support team, my daughters, my church family, my Nephew, my God’s Son together with his daughter, and Dr. Jordan’s colleagues who visit him often. My two children who live out of state come to surprise their Dad and me as often as they can, but with today’s technology we FaceTime them when we visit.
This support team allows me the flexibility to take trips to see my children and grandchildren who live out of state or to just do a getaway! I’m thankful for my support groups, the friends who have not abandoned us, my children who are the best, my colleagues, Bob’s colleagues, Bob’s agency caregiver, who still visits him, my church family, and the support goes on and on. The vows we took 57 years ago have even more meaning to me now, “for better or worse, for richer or poorer, in sickness and in health we’ll be one till death parts us!”
In honor of Black History Month, we spotlight those making a difference in our cause. This week we feature, Lisa Barnes, Ph.D.
Dr. Barnes is the new deputy editor of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association. This newly-created role is designed to reflect and adjust to the rapidly changing field of Alzheimer’s and dementia research by expanding the topics covered in the journal.
Alzheimer’s and Dementia: Journal of the Alzheimer’s Association emphasizes interdisciplinary investigations related to the causes of the disease, risk factors, early detection, treatment interventions, prevention of dementia, and the application of new technologies in health services.
“We will strive to improve diversity and end bias in research while maintaining the high levels of rigor and quality that Alzheimer’s & Dementia is known for,” said Barnes, a cognitive neuropsychologist and Alla V. and Solomon Jesmer professor of Gerontology and Geriatric Medicine at the RUSH Alzheimer’s Disease Center at RUSH University Medical Center in Chicago. She is the associate director of the RUSH Alzheimer’s Disease Research Center.
“We plan to build an outstanding group of advisors who will ensure that Alzheimer’s & Dementia remains at the forefront of scientific integrity and groundbreaking Alzheimer’s research,” Barnes added.
The new deputy editor will provide editorial support, guidance, and counsel to the editor-in-chief and the editorial board. She will also work with the editor-in-chief to enhance and guide the editorial staff.
“The Alzheimer’s and dementia field is evolving, and the changes to the journal reflect that growth and expansion,” said Donna Wilcock, Ph.D., editor-in-chief, Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association. “Dr. Barnes’ clinical expertise complements the translational research focus of the current editorial staff. Her accomplishments in the epidemiology of aging and Alzheimer’s disease will help to expand the focus of the full suite of journals.”
Barnes received her Ph.D. from the University of Michigan in biopsychology and completed a postdoctoral fellowship in cognitive neuroscience at the University of California, Davis. She joined the faculty of RUSH as an assistant professor in 1999. She has received many NIH grants and has published close to 300 manuscripts. Her research interests include disparities in chronic diseases of aging, cognitive decline, and risk factors for Alzheimer’s disease. She is the principal investigator of two longitudinal community-based studies of older African Americans, including the Minority Aging Research Study (MARS), which has been funded by NIA since 2004. She advocates for the recruitment of under-represented groups into clinical studies and has received many awards and fellowships.
About Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association Since its inception in 2005, Alzheimer’s and Dementia has sought to rapidly disseminate new findings and serve as a platform for clinical investigations and articles covering basic, social, and behavioral research.
Solomon Carter Fuller, M.D., was among the first known black psychiatrists and a pioneer among Alzheimer’s Champions. The grandson of a slave, Dr. Fuller worked alongside Dr. Alois Alzheimer, who discovered the traits of the disease in 1901. Dr. Fuller is responsible for countless contributions to the field as a researcher and educator. The Solomon Carter Fuller Mental Health Center in Boston is named in his honor.
To find our special programs featuring Dr. Fuller’s legacy go to alz.org/CRF
