I want to share with you a new meaning for ASAP. A = Acceptance, S = Socialization, A = Attitude and P = Purpose. I have found these four things to be the foundation of my living with Lewy Body Dementia (LBD) well.
ACCEPTANCE - I was able to immediately accept my diagnosis of dementia because I had seen seven other doctors in fifteen months. I finally had something that I could hang my "hat on". Three months later though, I had to accept the likely path of my disease. As I was able to do this, I became able to forge ahead. I did not want to be a statistic. I told my wife that I would defy all statistics. Deciding that I would rule LBD and that it would not rule me became deeply ingrained in my mind and actions.
SOCIALIZATION - This is extremely important. It is my lifeblood. I have chosen to attend Dementia Mentors Memory Cafes every Wednesday and Friday. Through Dementia Mentors, I have the opportunity to mentor persons with LBD all across the world. I am able to virtually meet with them as we share our disease together and help each other. What a gift to me this has been! My wife and I started Purple Angel Memory Cafe Thomaston on January 8, 2015. On March 31, 2015, we will be starting Purple Angel Memory Cafe @ Cambridge House in Thomston, Georgia. The following month on April 17th, we will start Purple Angel Memory Cafe @ Cambridge House in Newnan, Georgia. Future plans are to start a memory cafe at Cambidge House in Griffin, Georiga in a few months.
ATTITUDE - My attitude sets the stage for how I will live with my disease. It enables me to set aside the absurdity of many LBD issues. My attitude enables me to stay focused on ruling LBD in my life and it not ruling me.
PURPOSE - It took me fifteen months after my diagnosis of LBD for me to realize that God was not through with me. As I found my new purpose in life, I was able to forge ahead and live with LBD well!
©2015 Robert Bowles
The one thing that is predicable about Lewy Body Dementia is that the disease itself is UNPREDICTABLE. Most people without LBD, probably wake up in the morning with a facial expression that may reflect their emotions for that day and often those emotions might remain throughout the course of the day.
Enter LBD into my world. Chaos follows and many faces of LBD are alive and well in my mind and body. Questions flood my mind. Why is this happening? When will it change? Will it ever change? Will another face show up today? Where will I go? What will I do? Can I change my face today? Will I be wearing multiple faces before the day is over? So many more questions may occur that allow my brain to run rampant with thoughts of what might lie ahead. I have my faith to cling to. My faith sustains me through everything in my life. My faith calms the storms of LBD when they appear.
I have created an acrostic, HEDASS. This acrostic represents (1) Happy (2) Embaressed (3) Disgust (4) Angry (5) Surprised (6) Sad. It is important to realize there are so many more emotions taking place in the person with dementia. The face that I wake up with may not be the face that I go to bed with. As the day progresses from waking up to going to sleep, there may be multiple faces that will rear their ugly head. Sometimes, there are many faces occurring all at one time. The emotions present can often become like a game of ping pong, bouncing from one side to the other.
Happy - I think about all of the good things that many of my friends are doing in creating awareness about dementia and the impact that it has on their lives. So many people are begging to realize there is life after a diagnosis of dementia. While I desire that a cure for dementia will be found, I am thankful that I have a clear and concise understanding of my disease and the feelings that might occur.
Being able to describe them with the goal of helping other persons with dementia (PWD)) and care partners brings happiness to my life.
Embarrassed - I am fortunate that this is an emotion that I do not have to deal with at the present. If or when I lose my filters, I am confident that I would be highly embarrassed at that point. I can only hope that I do not realize that I am doing something that would be embarrassing. For many though, the stigma that far all too long has been given to dementia has caused many PWD to isolate and attempt to live with their disease by themselves. This can be very problematic because socdialization is one of the most important things a PWD can do. Socialization will often improve the quality of life in the early to moderate stages of the disease.
DISGUST - It is disgusting to think about one of my loved ones having to change my diaper. Also, it is humiliating to have anyone have to change my diaper.
ANGRY - I am angry at LBD. I hate this face. LBD is one of the most horrific diseases that I know of. The motor problems of Parkinson's, the cognitive problems of Alzheimer's, the psychiatric problems that include hallucinations, dream acting, nightmare and delusions are all part of this disease. It is such a multifaced disease that invokes its rage into so much of an individual.
SURPRISED - I must admit that I am a bit surprised that I am doing so well in my journey with LBD at the present time. The statistics that I read following my diagnosis were devastating. I simply decided that I was not a statistic, but was created by God with certain inalienable rights. I am thankful for the new purpose that God gave me in my life with LBD. My purpose in life enables me to forge ahead and live with LBD well.
SAD - Sadness permeates my inner being. The only fear that I have is thinking about what my wife and family might have to go through with this horrific disease. They deserve so much more and should not be facing this journey.
For now, I will forge ahead and live with LBD well!
©2015 Robert Bowles
This day has been one of my most difficult days since I started doing better three months after diagnosis of LBD in June 2012. Last night, my sleep was constantly interrupted. As I woke up this morning, I was experiencing a new feeling inside my brain. Over the next six hours of this feeling, I tried to think of ways to express how I felt. I struggled with this more than any other time a new feeling took place. Finally after six hours, the feeling disappeared; and, I had thought of no way to explain it.
The picture above represents my brain in the skillet and the flames are flowing over the side. For me, it was like a low grade electrical shock that was relentless and never stopped for those six hours. It was frustrating, perplexing, endless; and, there did not seem to be anything I could do to get rid of the feeling. Most times, I can stop what I am doing and just rest in the recliner. Judy was out of town and I was at home by myself. I began asking questions. Why is this happening? What can I do differently; and, yes, will it ever stop?
As I was about to believe that it would never stop, my wife called and told me she was driving into town. She told me that she was coming to get me and we would go eat some lunch and run some errands. Doing those things cleared my brain and the horrible feelings disappeared.
Maybe distraction and disengagement might be a solution if this occurs again. Then I remind myself, with LBD, you can never tell. The path of LBD is the most unpredictable path that anyone could ever imagine. In fact, most people will never know just how much a roller coaster ride it is.
I have put a link below to a youtube video done by Dr. Dennis Dickson at Mayo Clinic in Jacksonville, Florida. He is on the Scientific Advisory Board for LBDA. In this video, he explains LBD.
Dr. Dennis Dixon - Mayo Clinic - Jacksonville, Florida
©2015 Robert Bowles
Neither the person with dementia (PWD) or the care partners have chosen to be in the role they are now in. The question that must be asked is: What can we do do minimize the collateral damage that can so easily occur in both parties. My Mom and Dad both had dementia. I spend many hours a day advocating for both the PWD and care partners. I understand both roles.
Let's join our collective efforts to develop ways that both the PWD and care partners can have better quality of life. One of my passions is finding ways to lower the high percentage of families that disintegrate as a result of a loved one having dementia. We can start by making comments about the things that we feel will make quality of life better for both parties. As you make your comments, please be respectful of others. If you choose, you can private message me at: https://www.facebook.com/LBDlivingbeyonddiagnosis
Welcome to my world of living with dementia of the Lewy Body type (LBD). I have opened the door, and you have chosen to come in. While I wished I had never had to open the door, I am thankful that you have chosen to come inside. You are important to me, and I need you in my life. Please never forget that you have come into my world.
It is important to remember not to argue with a person with dementia. If you have ever been inclined to think you might win the argument, I would suggest that you think again. This is one of many things that I really do not like about my world of dementia. While I have always been opinionated, I never liked to argue.
What you see in my world is real to me. My disease has progressed to the point that my filters are sometimes less than desirable. Sometimes, I feel humiliated because I cannot control my emotions; and, I feel frantic and there is nowhere that I can go to remove myself from that feeling. Sometimes, I even feel like I'm being disrespected.
Often, there are people who come into my world who do not want to be there. I am sorry that you might feel uncomfortable in my world; but, I still need you in my world. I need all the socialization that I can muster because it improves my overall sense of well-being. I long for the day when there will be a better understanding of what it is like to live with dementia. Deep within my soul, I want the lives of the person with dementia, their care partners, friends and others to be the best that it can be. I cannot alter the path of my disease; however, most likely you can make small changes that will enable you to enjoy the peace that I experience.
Even though I do not like my world, I am comfortable in it so long as I have calm and peace. You are integral part of making that happen. Together, we can enjoy life when this occurs. I want you to have just as much peace in your life as I do.
Please remember when you come into my world, there might be things that you do not like; but, I am thankful you are here. I still need you to come into my world; and, I am still Robert Bowles.
©2015 Robert Bowles
When someone tells me something to do, they need to be quiet and patient. Just because I am slow in responding, does not mean that I do not know what I have been told to do. An example of something that would create frustration and increased anxiety in my mind and body is: you might say Robert will you take the things out of the car, if you do not mind. That would be fine unless you pause in between the two thoughts. If you pause, my brain has already started planning how to execute what I have been told to do. With my example, I would suggest that I be told "If you do not mind Robert will, you take the things out of the car". What ensues with the example is utter chaos inside my body. Immediately, I go blank. I will lose my focus. I have no idea at that point what I have been told to do. May I suggest that the best approach with a person with dementia is to start off with the defining parameters first and finish the sentence with what you want them to do. Care partners and others following this process will most likely see less anxiety and frustration in themselves and in the person with dementia.
©2015 Robert Bowles
I now realize how my Mom and my Dad probably felt when they were being hurried to complete a task. My two wonderful daughters were helping me today with some computer work. My friend Harry Urban has a background in computers and website design. While I am fairly savvy with computers, I knew nothing about website design until I purchased the templates and began working on the website. With a little coaching from Harry, I have been able to bring this website to its current state.
Since the beginning of dementia, there has been a stigma associated with it. As a result of this stigma, persons with dementia have remained largely quiet about their disease. Now, many persons with dementia are stepping forward and sharing their experiences and the impact they have on their lives. Our sharing what it is like inside our brains can have a huge impact on care partners. As they understand what we are experiencing, they will be better able to provide care with less stress and agitation in their own lives. I feel that I have been gifted with being able to discern what is taking place inside my body and explain it to others. I will be sharing my experiences in my life and hope they will help others and their families.
Even though I have dementia, I love the fact that I am still able to challenge my brain and continue to learn. I may be slower; but, I am still highly functioning. My two daughters and I were working on the website. We were trying to hurry so that Kelli could drive me to the grocery store. It was taking longer than usual to complete what we were doing. My wife has both systemic lupus and rheumatoid arthritis. She needed to go to bed and there were three grandchildren that she would be with alone with if we went to the grocery store. Inside my brain felt scrambled. Kelli and I had three stores that we needed to go to. Unfortunately as a result of my not planning the best sequence of store visits, I became very agitated and again my brain felt as if it was scrambled.
When these feelings occur, I become light-headed, agitated, frustrated, and hopeless. I often start shaking and crying. It is very frightening. I have no idea how to change the course that is taking place. Fortunately for me, Kelli took control and in her calm and sweet spirit calmed the storm. I am so thankful that I have an understanding family that is with me to the bitter end.
Physically running a marathon can be long and arduous. I had to prepare to run my marathon with LBD. At the time of diagnosis in June 2012, I acknowledged and accepted my diagnosis. I was determined that I would not be a statistic. In August 2013, I accelerated my preparation for living with LBD well. Infrastructure was put in place to allow me to do this. Goals were set. Benchmarks were put in place. Further planning and development became a must.
As a result of doing this, I started feeling better and doing more different things. I was challenging myself to living with LBD well and having an impact on the lives of others. I wanted others to know; there was life after a diagnosis.
It is not all peaches and cream; but, there are more highs than lows. The highs are higher than previously experienced; and the lows are not as low.
Be LBD Strong!
©2015 Robert Bowles
What can I do when I wake up in the morning and there is an overwhelming fog right before my very eyes? Do I go back to sleep? Do I get up and shower? Do I jump up and run through the day wide open? Do I sit in the chair and possibly recline and just experience some quite time?
I feel these are good questions. For me, I have found that I just need the quite time. I call these moments "Tired Brain Syndrome" I have chosen the anacronym "TBS". I will let the recliner back. During this time my mind just wanders; and, I am really not thinking about any one thing very long. I have found that if I take this quite time, I will come out of the fog sooner rather than later. If I chose to push ahead and then stop, it may take a day or several days for the fog to disappear. My plan is working, so I will stay with it.
©2015 Robert Bowles
The Thomaston Memory Cafe today was a blast. Two weeks ago when we started, we had planned to meet for one and half hours. There was so much energy and participation today that we stayed for two hours. I think all of us walked away feeling better than we did when we got there.
There are so many opportunities and things that can be done in a Memory Cafe. We deal with difficult issues that lie before us, but we do not stay on those topics. Today, we talked about hospice care and when is it time to call hospice. Each person had the opportunity to share whatever they wanted to share. We played a game together. The important thing that came out of the cafe today was that we were able to share, tear-up, and have engaging conversations.
©2015 Robert Bowles
Most of all, we had fun!
The presence of joy has been so great in my life today. Our plans to expand Memory Cafes has taken a giant leap forward. Cambridge House Adult Day Care has asked my wife and I to start a Memory Cafe at their center in Thomaston. They want me to also train their staff to interact and communicate with persons with dementia. This will begin on February 3, 2015.
Robert Bowles, Jr.