I am the type that “sweats the details” and worries about most things. These traits have served me well professionally, and to a degree personally. However, no amount of data or forward thinking could have prepared either me or my family for the life test we have been facing. With a total population of over 320,000,000, in the United States; 5.3 million are living with Alzheimer’s disease, including an estimated 200,000 under the age of 65. In the case of our Waverly family, two members of our staff have spouses that were diagnosed with early on-set Alzheimer’s – consider the odds. This statistical improbability has, and will have, an enormous impact on our small business. Given that I am one of those two, I have first-hand experience with the effects of the disease as a spouse, as a parent, as a business owner, an employer, a friend, and as a member of the board for the Alzheimer’s Association. Published figures suggest that the disease affects a relatively small number until you consider the figures in the context of the population size of the age group. The Alzheimer’s Association predicts that diagnosed cases will increase by 40% during the next 10 years. In addition, there has been a rapidly growing number of those diagnosed between the ages of 50 to 65. My name is Jef Eyring and I am the President of Waverly Construction & Management Company. My wife was diagnosed 10 years ago at the age of 52 with Posterior Cortical Atrophy (PCA), an Alzheimer’s related disease.
In addition to the classic Alzheimer’s symptoms of gradual loss of memory and functionality, a hallmark of PCA is a change in a person’s ability to see. My wife’s brain has been gradually losing the ability to process visual information. Her eyesight is good; her ability to understand what she sees is severely impaired. These vision problems were the symptom that caused us to search for a diagnosis in the first place. But the truth of the matter is that other issues of memory and personality change had occurred as well, and for a long time prior. We had written-these-off as simply normal parts of aging. Like so many others, I think we just rationalized the symptoms away. When a formal diagnosis came, it was stunning for me. It shocked the doctors as well. Who could imagine this happening to a 52 year old? On top of it, the formal news came on the day that we buried my father. It was a challenging time, to say the least.
In the beginning we didn’t tell anyone, including our children. We didn’t see the point. It is an incurable disease and in the early days, symptoms were only an annoyance. Our challenges were mainly emotional. She was a really smart woman who knew what the diagnosis meant. I was a “fixer” who just couldn’t admit that this was a titanic and hopeless problem. So along we went, trying to support each other. Three years after the formal diagnosis my wife was accepted into a clinical trial of the Eli Lilly Company. The program gave us hope and gave us the strength to announce our situation to friends and family. The science of the study is use of a monoclonal antibody. Antibody cures are now being evaluated for many diseases, including Alzheimer’s and cancer. The very good news is that recently published reports suggest that the results of these studies have been encouraging for patients in very early stages of the disease. These findings offer hope to future generations. The bad, and then unknown news for our family was that my wife was already beyond early stage Alzheimer’s as she entered the trial.
Over the following six years she deteriorated from functioning relatively well, to requiring help with every daily task. Her impaired vision presented safety concerns as she navigated our home and a neighborhood which included stairs and irregular walking surfaces. My wife was a woman who loved life, loved to travel, loved her family and got the most out of every minute. I cannot imagine the fear and anxiety that she must have felt and may still feel as her condition continues to decline. Her independent, adventurous and fearless nature could never have prepared her for this. And to say that it is unfair is an incredible understatement when you consider the importance of her life, and the impact that her disease has had on so many around her. My work-day started with cleaning, dressing, and feeding my wife. It ended with feeding, dressing and cleaning my wife. With the exception of help from my children, weekends were non-stop care. Squeezed in between was a relatively ineffective attempt to be a business owner. A letter that would have taken 15 minutes to write, took an hour. Decisions that at one time were considered routine were put on hold. Work became a secondary concern. How could it not? The project became my wife. In the beginning, my focus was clear. Each day was manageable. After years of a similar daily routine, a few things happened. First, I couldn’t see a day-of-care as simply a day any longer. I began to look forward…a month, a year. It became an overwhelming thought. Not only had the care of my wife become overwhelming, but I realized that I had lost my best friend, companion and confidant. We could no longer communicate; not even a simple conversation about something as seemingly menial as “What do you want for dinner?” (Something I would now give anything to be able to speak with her about) and lastly, in spite of our continued enrollment in the Eli Lilly trial, I lost hope.
One year ago, my wife was permanently admitted to a Memory Care unit of an Assisted Living Facility in Baltimore. This move changed everything, and quickly. There was relief as professionals were now in charge of the day-today work and care for safety. But, there was an emotional drain associated with letting a loved-one go. Our children reacted in ways that ranged from extreme sadness to extreme anger. The emotional stages of our family’s grief have been compared to those experienced in divorce. The most notable similarity was the act of placing her in assisted living. To the one angered by the situation, it appeared as a form of abandonment, and a sign that I was moving on with life. For me, it was ensuring my wife’s safety and wellbeing 24/7 and not allowing this tragic disease to crush both of us. Today, my wife doesn’t know me and is unclear about relationships. She thinks her children and I are her friends. And so our family carries-on, with a struggle which will likely continue for some time to come. The reason my story becomes important is that while every situation is different and each family dynamic varies, the emotional path of a very long term disease, for which there is no known cure, can be debilitating at many levels. They say that you can’t fully understand another person unless you walk a mile in their shoes; and for good reason.
With differing relationships come differing experiences and resulting emotion. A spouse and a child have had remarkably different experiences and relationships with their loved one. The emotion, the reaction, the commitment and the sense of loss seem to be remarkably different as well. Influences beyond family are challenging too. As a business Owner you have responsibility for the success of your company. After all, there are often many people who rely on the organization for a livelihood. This responsibility can run counter to the needs of an effected employee as their focus shifts toward a very personal matter. As an employer you are concerned about maintaining a replicable posture, without piling-on an employee who is already facing financial and emotional challenge. As a friend you are trying to provide advice and support, and yet you are incapable of fully understanding the issues and emotional trauma of the individual that you are trying to support. And while it may seem trite, you realize quickly that bad things do happen to nice people. The likelihood is high that everyone who reads this will sooner-or-later be touched by Alzheimer’s.
The reason I am sharing my story is to spread awareness of this devastating disease in hopes of increasing funding for research, education and care so that future generations do not have to face the tragedy of Alzheimer’s disease. Did you know that the National Institutes of Health spent far, far more on heart disease, cancer and HIV in 2014 than Alzheimer’s disease? Approximately $6 billion was directed toward cancer research, nearly $4 billion on heart related disease research and nearly $3 billion on HIV/AIDS research. But, NIH spent only $586 million on Alzheimer’s research. The reason for stating these facts is that death rates for these terrible illnesses have declined while rates of Alzheimer’s deaths have increased. And, given the projected growth in Alzheimer’s and related diseases over coming years, death rates will accelerate as well. It seems all too obvious that money does matter. The mission of the Alzheimer’s Association is to not only advance research for this terrible disease, but to enhance care and support for all affected. This includes caregivers and their families. Emotional care matters as well. Moreover, your support is important.
On October 31, the Alzheimer’s Association Greater Maryland is hosting its annual Walk to End Alzheimer’s. The event will begin at Rash Field and travel around Baltimore’s beautiful inner harbor. Our own Brittany VanDivner is organizing a Team (“A Walk to Remember – Unbind the Mind”). The link to the team page can be found Waverly will be participating in the 2015 GREATER BALTIMORE WALK TO END ALZHEIMER’S at Rash Field in Baltimore on Saturday, October 31, 2015. DONATE ANYTIME! Every dollar counts! Your donations help fight Alzheimer’s by funding research, education, and support programs. Visit http://www.alz.org to make a donation! on the front of this newsletter. She, we, greatly appreciates your care and support. Thank you… Jef
(editor’s note: my Dad, Warren Brandon died of Alzheimer’s in September 2000 so my good friend’s article hit especially close to my heart. I am sure you or someone you know is aware of this growing and devastating illness. Research into a cure is the only way that this research can be done. Try to do what you can to support your local or the national Alzheimer’s Foundation, thanks)