Source: A Silent Night, A Holy Night
This will be the first Christmas holiday season that I have not had a job. No office holiday party, something I looked forward to with real anticipation each and every year! Very often this was the only Christmas party to which I was invited so it was always very special to me. No exchange of Merry Christmas or Happy New Year wishes this year with fellow employees, vendors, and business associates who I had formed close personal ties over many years of developing commercial real estate projects throughout the Mid-Atlantic.
Although I was careful to be ethical in acceptance of gifts and followed all proper company policies many of these people became close friends albeit always maintaining an appropriate professional separation while conducting business. I admit to taking my guard down during the Christmas season and feeling personally close to many fellow employees and business partners.
I loved each of the three jobs I enjoyed over 35-years starting as a city planner then as a land development project manager and finally as an officer for a publically traded real estate investment trust. But what I most enjoyed were the people who I worked with. That love was second only to the special love I have for my immediate family. I miss my business friends this year and it is hitting me very hard for reasons that I am exploring while trying to work through successfully with my psychologist and with God and my minister.
Christmas was a special time of the business year for me. When smiles were on almost every face and a bounce was in almost every step. When people you cared about looked ahead with anticipation to a New Year full of possibility and if applied along with some good luck always held forth the hope of unlimited prosperity!
Such a pleasant time to be in business and a joyous time for all my business acquaintances. Many business relationships were of long standing and strong personal attachments developed through multiple projects accomplished within wonderful team work environment. I palpably feel the loss of these friends and my job this year.
The doctors took my ability to work away from me in May this year when my mental illness manifested into bouts of short term transient amnesia. Fortunately all the tests have shown so far that these amnesia events are part of my mental disorders rather than any physical neurological issues (I thank the Lord for any blessing, no matter how thinly they are veiled!).
Currently my diagnosis is that I just cannot tolerate any level of stress or anxiety whatsoever or my mind simply shuts down and I experience transient amnesia. The most serious and notable event occurred in May this year while driving. I have absolutely no memory of the amnesia gap whatsoever. I got in my car after having it serviced, checked my watch with plenty of time to drive to a doctor appointment across town which should have taken about 15 to 20 minutes. Off I went and I do not remember a single thing that happened for the next 90-minutes!
I ended up parked in an abandoned shopping center under a tree with the car still running and in gear but correctly in a space with front tires against the curb. I looked at my watch and 90-minutes had elapsed, go figure! I have had several other transient amnesia events but none others while driving. They still are quite disquieting and each causes a combined sense of annoyance, discontentment, fear and anxiety.
I have had a wreck since my diagnosis and even though the car in front of me turning was obscured by plantings in the right of way I wonder if I was my old self if I would have seen that and not just plowed into the car, flipping it over. Fortunately no one was hurt! My insurance paid to fix our cars and I wish there was some way to fix me!
I have applied for total disability based on chronic pain caused by arthritis in my knee from an injury 22 years ago and more notably from arthritis and spinal stenosis with disc degeneration and early Kyphosis which I have suffered from in gradual decline for well over 40 years and fortunate to be in a great pain clinic for treatments every month ranging from RF nerve deadening, cortisone injections, and on a high dosage level regimine of combinations of pain medications now for well over a decade.
More distressing is the continued degraded progression and deterioration of my mental condition. Although I have suffered periods of depression about every 10-years my entire life, with each episode getting gradually worse over time relative to the last; about 7 years ago I fell into a bottomless pit of severe depression which I have not been able to climb out of yet.
Just when I think I am near the top of the pit I fall backwards again into what I can best describe as a bottomless void of complete darkness with no frame of reference. When I walk I feel as though bags of cement are piled on my shoulders. A heaviness pervades my whole body that I cannot seem to get rid of no matter how much I pray or how many doctors I see. I don’t see in colors, everything appears to me to be in shades of darkness and very fuzzy without distinct shape or lines in any form. Various shades of gray. And I cry, I cry a lot. And I pray, I pray a lot.
I have not lost hope but have now been on almost every type and combination of medications that are currently available all with no appreciable success. People who have not had to take psychiatric medication have no idea how difficult and literally mind numbing they are.
You have to gradually go on, experience at time terrible side effects, establish some form of treatment dose and stay on that for some period of time often in an almost zombie-like state, then when it is determined that the drug is not effective or the side effects cannot be tolerated you have to wean yourself off the medications.
This is a medication protocol process which on average takes 3 to 4 months of duration. It is horrible and when you are deemed drug resistant the dosages are typically higher than normal. In my case I have the potential drug interaction with my high level pain medications that prove tricky to predict and manage.
Then invariably when this combination of psychiatric drugs does not work there are always the next psychiatric attempt for relief. This involves the same weaning on, getting to a treatment level, monitoring the side effects and weaning off but now often with new and at times brand new drugs and untested combinations of these medications.
The bottomless pit is still there and I continue to fall backwards, always falling. It is clearer than ever to me now after all these years with multiple psychiatrists that they are simply trying, usually to the best of their ability to see what works but it is largely a guessing game with you as the guinea pig. It is not easy to provide your own patient advocacy while undergoing treatments that put you in altered and at times a compromised mental status This has been my life for the past 7 to 8 years and I would not wish it on anyone. It is a horrible existence.
I am at the point where I am considering Electroconvulsive Therapy (ECT) but this scares me the worst since there are distinct possibilities of memory loss, short and long term and it is a multiply applied inpatient treatment with regular repeated treatments. This is considered the last resort and I am not quite prepared to go there just yet
I am currently diagnosed as treatment resistant recurrent severe depression, extreme anxiety with panic attacks and transient amnesia, sleep disorder, borderline personality disorder with noticeable deterioration of cognitive ability often referred to as early dementia. My Dad suffered from Alzheimer’s Disease so the doctors are watching my cognitive decline very closely. I know what is coming and I am afraid.
So I wait. Impatiently I wait. I filed for Social Security Disability in June through a firm that specializes in nothing but these types of cases. I have waited since my application was filed for any news from the Social Security Administration. My disability advocate says I have a good solid well documented case and will eventually win but I am not a patient man. This process can take from 6-months to 2-years and that is just not right.
I did finally after 6-months just this past week get a notice that Social Security has requested that their medical examiner see me and do an independent evaluation later in January. I pray there will be good news and my benefits that I worked hard over 37+ years to accrue will be approved! If not the appeal process can take from six more months to another year and a half. So I wait. And I wait. Unsure what my next steps will be and unable to properly plan without knowing for sure what my benefits will be. Thank God that my wife has a good solid job. I frankly don’t know how people less fortunate can make it through this bureaucratic quagmire
My purpose in relating my story in such detail is not to solicit sympathy. It is to help someone else out there dealing with a silent illness not to feel like they are all alone. You are not alone for I suffer with you! There are resources available within your family, your community, your church, your doctors, your friends. Please do not be afraid to ask. Only in asking can you hope to get some help. Do not take your own life, and if you are considering this get help immediately. Dial 911. There is help out there and you can get that help but you have to ask!
You always will have a friend in me. I cannot do anything except listen but I will do that if asked and do it willingly because I know the hell you are going through and how alone it can make your feel. I am also telling my story in hopes that it may help to eliminate some of the stigma surrounding chronic pain and mental illness, two of the “invisible” diseases since they can’t be deduced by any current test or cursory observation. If anything I do offers even one, just one person just a smiggen of relief then I am willing to endure the difficulties and embarrassment incumbent on relating my story!
The Bible declares that patience is a virtue. One which I must admit is among the hardest lessons for me to master. But a virtue that I must master in order to deal with my declining physical and mental conditions.
“A man’s wisdom gives him patience, it is to his glory to overlook an offense”: Proverbs 19:11 NIV
Yet my entire life I have been a man on fire, pushing pushing pushing to get projects completed on time and to make things happen as scheduled. Patience is a virtue that I clearly need to cultivate.
“In purity, understanding, patience and kindness, in the Holy Spirit and in sincere love”: 2 Corinthians 6:6 NIV
But it is an imperfect world and God gives each of us our own cross to bear. The answer is not for me to complain about my difficulties. For so many have such horribly tragic events occur in their lives which makes my situation pale in comparison. Rather, my goal is to bear the cross I have been given with grace and humility. To begin to learn the real meaning of Grace.
It is a hard thing not to feel sorry for yourself when you know a piece of yourself, something that defined your being is gone and will in all likelihood never return. It is difficult to be patient in the face of bureaucratic delay putting your life on hold. Forced retirement puts other strains on the practical aspects of my family and our everyday life.
Yet then I think of Job’s testing in the Bible of his faith in God by Satan giving him every affliction and curse known and not only to Job himself but to his entire family. Reminding us that we can falter in our faith and it will be tested but in the end our faith in God will prevail if we learn patience, practice grace and master humility.
“Pay attention, Job, and listen to me; be silent, and I will speak.” Job 33:31 NIV
“In all this, Job did not sin by charging God with wrongdoing.” Job 1:22 NIV
“As you know, we consider blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.” James 5:11 NIV
So here the lesson is clear: we get to determine if we hold fast to God or whether we just let in to our troubles and tribulations and gripe about our situation rather than endure with grace. It is our choice, our decision. If I start to think of patience more in terms of perseverance the true lesson may become easier for me to understand and to model in my behavior.
Grace in Christianity (from Wikipedia, the free encyclopedia) In Western Christian theology grace has been defined not as a created substance of any kind but as “the love and mercy given to us by God because God desires us to have it, not because of anything we have done to earn it”, “the condescension or benevolence shown by God toward the human race”.
So I am torn this Christmas, as are so many between the sadness or depression they are experiencing and the happiness and joy that the season should bring. For me this is proving very difficult to take for the variety of reasons I shared with you.
But so many others are suffering the same dichotomy of the holiday torn between sadness and joy. Some of our friends do not have their loved ones with them because they have died, especially tough if this is the first holiday without them. You may be worrying about your loved ones if they are not able to be with you because your relationship is estranged. Or maybe they happen to be in another location where for whatever reason you are not able to be with each other during Christmas.
Especially blessed are those friends and family on duty in our military and first responders who may be unable to be with their family and their friends. My heart goes out to them and their loved ones for in addition to missing their Christmas at home the are forward deployed to protect and serve all of use and are in constant danger for their very life.
My heart is also with those Christians this year who are being persecuted for their faith alone in the Middle East, Africa and elsewhere by intolerant extremist Islamic jihadists whose hatred of anyone who does not believe specifically as they do will be a harsh judgement on their soul and is a stain on their religion.
Fortunately God gives us strength to make any suffering possible no matter how severe. The love you give this Christmas comes through you from God. He is with you always as He is with me as He is with us all, everyday and everywhere. He wants to be part of your life, to take the load that you willingly give to him in Christ’s name. This Christmas consider rededicating yourself to God.
So in spite of it all I know I am fortunate for I know that God loves me and I sit here late humming a favorite Christmas carol. Hum it with me, it may bring you strength as well. Oh, and Merry Christmas to each of you. My Friends, may we each find the true meaning of Christmas in spite of, or perhaps because of the hardships we face. All things are possible in Christ’s love!
Silent night, holy night!
All is calm, all is bright.
Round yon Virgin, Mother and Child.
Holy Infant so tender and mild. Sleep in heavenly peace, Sleep in heavenly peace.
Silent night, holy night!
Shepherds quake at the sight.
Glories stream from heavens afar
Heavenly hosts sing Alleluia,
Christ the Savior is born!
Christ the Savior is born!
Silent night, holy night!
Son of God love’s pure light.
Radiant beams from Thy holy face
With dawn of redeeming grace,
Jesus Lord, at Thy birth
Jesus Lord, at Thy birth.
Silent night, holy night, wondrous star, lend thy light.
With the angels let us sing.
Alleluia to our King.
Christ the Savior is born.
Christ the Savior is born.
MERRY CHRISTMAS TO EACH OF YOU MY FRIENDS AND A HAPPY AND JOYFUL NEW YEAR FILLED WITH ENDLESS POSSIBILITIES!
-Your pal John
Today is our second week of practicing Benjamin Franklin’s Thirteen Virtues. I wonder how you did on Temperance the first of the virtues that we practiced this past week? I was impressed that by thinking about the value of temperance I was able to take my consumption of food and drink down to what was required for my nourishment but did not binge or indulge (well, OK one doughnut but really who could resist a Krispy Kreme doughnut and I only had one!).
For our second week we move on to what I know I need more help with: Silence
“Silence is not always a sign of wisdom, but babbling is ever a folly” – Ben Franklin
A few suggestions from The Art of Manliness for living the virtue of Silence this week:
- Listen more and talk less during conversations.
- Don’t talk (or even check) your smartphone when engaged in face-to-face interaction.
- Keep texts and online comments appropriate, civil and respectful.
- Abstain from swearing.
- Curb sarcastic and cynical comments.
- Do chores or other activities without music or TV in the background.
- Before deciding to say something online or in-person ask yourself these three questions:
- Is it true?
- Is it kind?
- Is it necessary?
Today’s world is full of distractions, many of them that we do not have direct control over especially while engaged in business or other outside activities. Many of the distractions that we do have control over are often used to entertain us while we try to accomplish other activities or chores that we may not want to do, cleaning the house comes to mind. But when we have other distractions in the background even as an accompaniment to something we dislike to do we lose the opportunity to think. Our own thoughts are drowned out by the constant sounds of music or TV in the background.
Some may find, like me that ideas or issues we have been wrestling with often become clearer to us, almost as a revelation in quite times while engaged in often unrelated activities. How many times have I thought of a good idea while in the shower? Or the old but true statement that “I woke up at 3 am with the solution”. The silence that sleep affords us gives our minds the opportunity to focus on all those problems or issues that we wrestle with unsuccessfully during the day. Many of life’s issues are solved during silent introspective periods, without thinking about an answer the solution often becomes apparent.
This concept of Silence certainly applies as we relate to each other more and more through electronic media such as smartphones or emails. People lose the common courtesy of paying attention to who you are with at the moment and increasingly seem to want to “multi-task”, even to the extent of being discourteous to whoever we are with by checking out smartphones for messages or even answering those texts while we are engaged in direct conversation with others. You know how that feels inside when someone does that to you? It makes you feel like the other person does not think you are quite as important as whatever they are doing on the smartphone, it offends you on some level and that is unfortunate.
Now turn the table around and do something about that seemingly ubiquitous behavior of checking your phone for messages while with someone. If you are engaged in a direct conversation, whether face-to-face or over the phone pay attention to who you are with, only them and to nothing else. It will be amazing how important you make the other person feel but it will also improve the clarity that you are able to provide to the conversation.
To become a good listener is one of my personal goals. In order to listen you need to be silent. Not that you should not engage in the conversation at hand but you should listen more than you talk. Practice hearing what the other person is saying and comment accordingly, not as often happens taking their comment and then relating a story about yourself, almost as if in a competition of who has the better story or experience. If your story is relevant to the conversation you can offer it at the appropriate time, but not as a one-up on your companion’s experience.
I believe we all are guilty to a degree of digressing into using swearing as a relief valve. What we don’t realize is that by using discourteous words, especially in public we risk offending those around us. That offense causes them to not listen to what we are really trying to say but rather thinking about how crudely we are relating our story or our frustration. Swearing may feel good for a moment but it reduces our chances of getting our main point across to the other person and either turns them off or escalates the conversation into a yelling match, neither outcome productive. Use your vocabulary to express yourself with cleverness not crudity. This is one that I am sure we all can do a better job of accomplishing through focus and practice.
And I will leave you this week with the three questions to ask yourself before speaking or responding to any matter:
- Is it true?
- Is it kind?
- Is it necessary?
Have a great week with Ben Franklin and practicing the Virtue of Silence. See you next week.
Your pal John.
Visit http://www.theartofmanliness.com for other great ideas on shaping your own life.
-Ben Franklin” by Joseph-Siffrein Duplessis
By: John Brandon with inspiration from “The Art of Manliness” at:
1n 1726 when Franklin turned 20 years old, convinced of the necessity of it, devised a systematic method to improve his character. “I proposed to myself, for the sake of clearness, to use rather more names with fewer ideas annexed to each, than a few names with more ideas, and I included under thirteen names of virtues all that at that time occurred to me as necessary or desirable, and annexed to each a short precept, which fully expressed the extent I gave to its meaning” – Ben Franklin
Today I embark on a similar journey, at a much later time in my life to improve my character. To that end I have vowed to follow the plan outlined by Franklin some 289 years ago. I believe after reviewing many schemes that these virtues remain relevant to our time as they will remain for all time and for all people. Character is important. It defines us not only to others but most importantly character defines those ideals we wish to maintain for ourselves. Those touchstones that we may use to identify if we measure up to the standards of an internal standard which we find acceptable to enjoy life and to be an example that others may look too with approval. So with some trepidation of if I will follow through this exercise I embark.
“Tho’ I never arrived at the perfection I had been so ambitious of obtaining, but fell far short of it, yet I was, by the endeavor, a better and a happier man than I otherwise would have been if I had not attempted it.” So even Franklin knew he was never to obtain perfection of character. The important things in life often fall short of the perfection we desire a however they continue to deserve our attention and our best effort.
Franklin’s system was quite simple. He listed the 13 virtues on a chart to keep track of his progress toward each goal. Every week his focus would fall on one specific virtue, while keeping track of each his focus every week was on that one specific goal. Every week his focus would shift to another of the thirteen virtues and then repeat the cycle again so that he would make four rounds of efforts in any given year.
He placed a simple mark on his chart beside each virtue that he believed he had failed to measure up to each day. Franklin, as I suspect of myself, initially fell short and found himself placing far too many marks on his chart. But gradually, with focus and effort he discovered that there were fewer and fewer marks. He nor I or you will ever obtain the goal of “moral perfection” yet it was important for Franklin as it is for us all to try and by trying to do.
The mere focus on a particular virtue each week and cycling through those with repetition will lead us to a recognition of the importance of each and through our tendency to form habits by repetition the exercise will lead us each to better habitual behavior. Without further explanation, Franklin’s Thirteen Virtues:
- Temperance. Eat not to dullness and drink not to elevation.
- Silence. Speak not but what may benefit others or yourself, avoid trifling conversation.
- Order. Let all your things have their place; let each part of our business have its time.
- Resolution. Resolve to perform what you ought, perform without fail what you resolve.
- Frugality. Make no expense but to do good to others or yourself; i.e. waste nothing.
- Industry. Lose no time; be always employed in something useful; cut all unnecessary actions.
- Sincerity. Use no hurtful deceit; think innocently and justly, and, if you speak, speak accordingly.
- Justice. Wrong none by doing injuries, or omitting the benefits that are your duty.
- Moderation. Avoid extremes: forbear Wrong none by doing resenting injuries so much as you think they deserve.
- Cleanliness. Tolerate no uncleanliness in body, cloths, or habitation.
- Tranquility. Be not disturbed at trifles, or at accidents common or unavoidable.
- Chastity. Rarely use venery (sex) but for health or offspring, never to dullness, weakness, or the injury of your own or another’s peace or reputation.
- Humility. Imitate Jesus and Socrates.
So today begins this week’s focus on Temperance. As Franklin wrote:
“Temperance puts wood on the fire, meal in the barrel, flour in the tub, money in the purse, credit in the country, contentment in the house clothes on the back, and vigor in the body”.
From “The Art of Manliness” come these suggestions for living the virtue of Temperance:
-Eat only when you’re hungry; stop when full.
-Chew your food slowly and savor each mouthful.
-Don’t eat on the go or in front of your computer or television.
-Try not to eat anything with sugar in it.
-Fast for a meal or two; notice how it affects your appreciation for food;
-Drink alcohol only in moderation or abstain from it altogether.
You and I will move through the cycle of Thirteen Virtues together. I will share with you each Monday my observations and progress and invite you to comment on your own experiences as we examine our own behavior in a systematic manner. We will see if we can live up to Franklin’s ideal. He fell short, especially in the category of Order (and Chastity), as I expect to fall short in one or more areas. But the key is to do, not just to try but to do. We will by doing achieve a noble goal: to become a better person. And this shall prove to be a goal well worth pursuing.
-Your pal John
Friends are a true source of wisdom and education on a variety of topics because true friends care. I know that I learn a lot from people I have met on Facebook and other places online, often friends from long ago. A re-connection with long lost friends is an education in itself, often eye opening as how they turned out positive or negative. But I’ve found that people often don’t change from their base personalities, if they were negative early on in life it is rare in my experience that they will become positive as they reach maturity. Certainly there are exceptions and by no means am I suggesting that people cannot change for the better. In fact that is what I am trying to do now and boy is it hard! I have to continually remind myself to Identify, Challenge and Re-frame as part of my behavioral modification therapy. It is a challenge, try it yourself, to not look at things as negative especially if you suffer from depression like me. But try I will and the basic point remains: Friends help to keep me focused on the positive rather than the negative that inevitably finds it’s way into all our lives. Friends are the rays of sunshine on a cloudy day if they are true friends. True friends care about you more than themselves and that care shows in times of trouble or distress. I have been able to tell who my true friends are since I have made my medical conditions of chronic pain combined with recurrent treatment resistant depression, anxiety with panic attacks and altered mental status including global transient amnesia and early onset dementia. Wow, I’m not so sure I would want to be friends with myself! But reality is what it is and each day a new opportunity as trite as that sounds. We choose every conscious moment how we are going to interpret life. The more you educate yourself, and real friends help here as well, the more opportunity you have to be a good self-advocate for yourself in the medical community. So, thanks to my true friends. And to everyone else that wants to be open about themselves in a positive manner I am practicing my listening skills. No negativity or attitude need apply. That is the purpose of A Friend’s Friend, to know you always have a place to find a true friend that cares about you and a place that offers you the opportunity to care about others, your friends! A good deal all the way around and a rare oasis of kindness in an unkind world. We can make it, together as real friends!
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)