Live life to the fullest, Live live like never before even when you have been diagnosed with dementia. Each week, I like to reflect on what has taken place in my life and my family's life. I want each of us to do the best that we can do with all of the distractions that are taking place in our lives.
I have decided to use my Saturday blog each week to recap our week. I must hurry and write this blog because my oldest daughter and her two sons are visiting us today. On Sundays, I plan to write on my Faith Blog, sharing, how my faith sustains me through my journey. I will do this after attending Sunday School and Church. There are several things that I do every day, almost like clockwork. I get up in the morning and prepare my wife's coffee and have something light for to eat for breakfast. We often spend about one hour just talking with each other. Often, I will start washing and drying clothes. Usually, there will be dishes in the dishwasher from where I started the dishwasher the night before. I will unload the dishwasher so that it is ready for the day.
It is now time to go into my office and start my real job....advocacy. I was recently on a virtual memory cafe meeting with Dementia Mentors and needed to leave the meeting sooner that usual. As I left, I told them that I needed to go back to work so that I would not lose my job. The people on the cafe started laughing. I was workaholic in my own retail pharmacy practice. Often, I worked sixty to eighty hours a week and still made sure that there was time for family. I never slept much at night. Finding time to write on my blog, drive my blog post to twenty-five different dementia groups, Twitter, play Lumosity brain games, and exercise takes time; but, I always find time to do these every day. Writing my blog is one of things that I do each day that brings me much joy. It offers me the opportunity to share my insights of living with dementia through my experiences of living the disease, having both parents with dementia, now me and having been a pharmacist.
It is important for me to always have time for my family, friends, phone calls with questions about drugs and other things from people that I have loved that were patients of mine. Judy and I always want time individually and together so that we are better able to face this journey with dementia. I encourage her to get out of the house several days each week so that she can be with her friends that like to quilt and crochet. I encourage her to go to lunch with her friends. I do not feel that it is in her best interest to be with me 24/7 every day. I feel that often, care partners neglect themselves. Most likely this will make their life more difficult as time goes by.
Monday, Judy and I visited my neurosurgeon and my G.I. doctor. You can read about this on my blog, DEMENTIA PATIENT COMMUNICATING WITH PHYSICIAN on February 26, 2015. In between these two doctor appointments, Judy and I visited a Senior Living and Memory Care. You can read about this on my blog, VISITING ASHLEY GLEN SENIOR LIVING AND MEMORY CARE on February 24, 2015. Before driving fifty miles back home, we stopped at restaurant in Fayetteville and enjoyed a wonderful dinner and time together.
Tuesday was a little tamer. My friend, Phil Lawson, and his wife have been a part of mine and Judy's life for thirty-eight years. They drove us to Atlanta in June 2012 when I received my diagnosis of LBD. He drove me to get my hair cut on Tuesday and then drove me all around the county so that we could just look at the scenery. In the afternoon, our granddaughter, Morgan, came to our house and spent the afternoon and evening with us. I cooked supper for her and played with her. I continued to do my daily activities in the afternoon and evening.
Wednesday, my wife went to "sew day" at the quilt shop. I always appreciate the time that she has with the ladies. My daily activities completed, we went to a restaurant and had dinner that evening and spent time together.
Thursday, I worked on my daily activities and at 1:00 PM, Judy and I went to our Thomaston Memory Cafe. This was a great time together with like-minded people. I left the cafe and attended a meeting with the manager of a chain pharmacy so that we could discuss customer service. That evening, Judy and I went to a restaurant and had dinner.
Friday morning allowed me to start early. on my daily activities because Judy had a doctor's appointment out of town that morning. While she took a nap in the afternoon, I was able to resume my daily activities. That evening a friend of hers came to our house and they crocheted together. Then, we ate dinner together and I finished my activities.
Yes, I would say this has been a jam-packed week; however, it was similiar to how I lived my adult life. I once told several physicians that someone needed to develop a fleet enema for the brain. They would laugh at me; and, I would tell them that my brain was full and there was no more room for anything else. I started telling them this about twenty years prior to my diagnosis. It is ironic to me that a drug that is in Phase 2 clinical trails to treat dementia actually works as a garbage disposal and destroys the protein that is causing the problem. If this works, I will most likely feel that the fleet enema that I talked with physicians about has been developed. For now, I must wait and see if that will occur.
I do not intend to slow down until I have to. I must do what I have been doing all of my adult life and getting my seven to eight hours sleep that I am getting now. For the ten years prior to my diagnosis, I had significant sleep problems. I could never flip the switch and turn my brain off. With good medical care and appropriate medication therapy, I am able to get the sleep most every night that I need. I have gone from sleeping sixteen to twenty hours a day, having visual hallucinations and dream acting, memory issues, motor dysfunction and more that lead up to and just after my diagnosis, to learning to live with this disease and understand that there is life after diagnosis. Yes, I am on the highest and lowest roller coaster ride that I have ever been on. I never know what time or day that it will be. For now, I must stay focused on living with my disease well. I do not have time to die, I have too much to live for.
©2015 Robert Bowles
Years ago, when people had memory issues, it was often referred to as "hardening of the arteries". Back in those years, some people even thought the person was "crazy". It must have been looked at as a mental illness. Even today, some training programs for those responding to emergency calls, lump mental illness, wandering and dementia into the same discussion. I recently reviewed a slide presentation that is often used in law enforcement training. The slide presentation had forty-one slides, and there were only four that had anything to do with behavior issues in dementia. This is sad. Although the quality of, and the effectiveness of mental health treatment and services have improved over the last several decades, the improvements have not reduced the stigma of mental illness.
First, we must recognize that dementia is NOT a mental illness. Early to mid-stages of the disease, people may often function at a very high level. On my good days (my A+ days), I am able to function at a level that is close to my abilities, many years prior to my diagnosis. I am almost three years into my diagnosis. I still have some physicians tell me that they do not see that I have Lewy body dementia (LBD). My neurologist countered their comments by saying, "everything taking place, leads to dementia with Lewy bodies". When this occurs, it causes the person with dementia to second guess what is taking place. It creates utter confusion in the mind of the person with dementia. I know because it did it to me.
Dementia has had a stigma attached to it for many decades. With dementia, there is NO mental illness. The brain is dying and there is no cure. I have ask myself, how do we change the perception of this?" When we think about the fact that many persons living with dementia, feel isolation, "Is this their perception or is it, perceptions that others might have. I will feebly attempt to give my perception.
First, it is difficult for the person with dementia to change their perception. Often their perception is very real to them. Sometimes, people will attempt to change the perception of the person with dementia. I believe that this will rarely work. On the other hand, I believe that some family, friends, acquaintances, healthcare providers and others might have other perceptions. It appears to me that those other perceptions have a direct impact on the isolation that the person with dementia is experiencing.
How can this change so that all parties involved have a better life and able to achieve what their heart might be telling them to do" I believe that all parties are doing the best they can do with the available resources that are present today. I feel that our society, lead by our government officials, have failed to provide the resources to address these issues.
Most often, the person with dementia is doing all they can do. They no longer have the resources or continuous cognitive capacity to effectuate change. It appears to me that the only side of the equation that can change, is that of the other parties. I think human nature in most instances is to care and love other people; however, it appears that when dementia is present, many people have not been provided the resources of how to communicate and interact with the person with dementia. This is no fault of anyone. Teepa Snow does an incredible job with this situation. My perspective is that far too many people are not taking advantage of her wealth of knowledge and understanding. Many of my thoughts on dementia stem from my caring for my mom and my dad who both had dementia and now, my having it.
The reason that I selected the two pictures above is that I feel, we must unmask the stigma of dementia and reveal it for what it is. When we do this, I believe that people will listen. After people listen, they are able to have a better understanding of what it is like living with dementia and have better skills to offer the love, care and compassion that they are so desperately attempting to do. Soon after my diagnosis in June 2012, I developed a passion for trying to help others have that better understanding. Often, it is difficult for me to find the words that would best convey my thoughts.
I still have my dream of a world that has a better understanding of what is taking place with dementia. In the United States, I feel that we are in our infancy in this occurring; however, we are forging ahead and making progress.
©2015 Robert Bowles
Sometimes, we have to educate the doctor. Twelve days ago, I visited a G.I. doctor. I had emergency surgery for a ruptured colon in December 2013 with a resulting ileostomy bag. Complications followed the ilesotomy. I went back to emergency surgery to re-connect my colon. The colon would not start back working. Medication failed to work. I went back to the G.I. Lab for another colonoscopy and this worked. One year latter, I am having more problems with my colon. I am sure the fact that I have been diagnosed with Lewy body dementia (LBD), autonomic dysfunction, multiple system atrophy, diverticulitis and irritable bowel syndrome does not help.
I visited my G.I. doctor on February 13th (that was Friday the 13th). As he began his explanation of his treatment plan, he looked the entire time at my wife and never at me. I raised my hand to ask a question. His response with inflection was, "NO, I will lose my train of thought". By the time we left, I had no idea what he had told me or what my questions were. Neither did my wife, who has systemic lupus, rheumatoid arthritis and my primary care partner. I called the office twice over the next ten days to tell them that the treatment plan was not working. I even contacted my college roommate who is Professor Emeritus at a major medical school. I contacted a friend of mine that is Assistant Professor of Clinical Pharmacy a a major pharmacy school. The pharmacy professor even told me that the medication I had been given was contraindicated with what I was experiencing.
I returned for my visit on February 23rd. When the physician came into the exam room, he had read my paper describing everything that had taken place including me contacting the physician at the major medical school and the clinical pharmacist. His immediate comment to me was, "you have too many doctors".
My physician had opened the door, and I chose to come into his world and teach him Dementia 101. I told him that I had all those doctors because he was not answering my questions. Taking a a little further, I told him the impact of his not looking at me had on my first visit. I began explaining to him that it was not time for him to read my final chapter. That chapter had not been written. I explained to him that God would write my final chapter, not him. He apologized and told me that he would talk to me in the future. He found himself glancing at my wife several times and would catch himself doing this and then apologize. He began telling me his treatment plan and told me that he was going to give a twelve day supply of an antibiotic. When he told me the name of the medication, I quickly responded, "that is going to cost about $1,000". He said, "don't worry about that, I am giving you the full twelve day treatment". I can only imagine that he must have felt bed for how he had communicated with me.
Previously, I had asked my college roommate, "when will doctors every get, how to communicate with a person with dementia". His response was, "start with the students, interns and residents....one doctor at a time"
For now, I think each of us that are living with dementia and the care partners must be diligent in improving and developing a close bond with those who are providing care for us. If we do not tell them, they will not know.
©2015 Robert Bowles
Visual hallucinations are one of the most difficult things that I encounter in living with Lewy body dementia (LBD). The flood of emotions that occur are overwhelming at best. I even have one friend who has visual hallucinations almost 24/7 and many days in a row.
Approximately, one week ago, I experienced my first visual hallucination in over two years. Previously, I had seen small children, small animals, gold spots on my legs and wavy trim around the door. These are the type things that Dr. Dennis Dixon of the Mayo Clinic has documented in a one minute video. On all but one of those times, my wife could calm me by telling me, they were not there. On the other one, I challenged her; and, she had to get a flashlight and show me, they were not there.
My personality has changed recently. I have always been a very serious person. I knew how to laugh and enjoy living; but, I did it in a serious manner. Suddenly, I started a giggly laughing when she and I would be talking in the mornings. She had told me that she wished, she could video me so that she would have it latter. After this recent hallucination, she said, "I wished I had "taken a video of this". I told her that it was so real to me and was etched in my mind so deeply that I could reenact it. It is still etched in my brain today, ten days latter. I cannot look at the video and not start crying. I can feel my blood pressure rising and my heart rate racing. The hallucination occurred just before, she was about to put eye drops in my eyes.
We did this within one hour of the hallucination. After my wife viewed the video, she said, "that is almost exactly like what happened". The one thing that she noticed was, "you did not laugh as much in the video as you did when the hallucination was occurring". I noticed one other difference. In the video, I did not challenge her when she said that the gold spots were not on the ceiling. When the hallucination occurred, I challenged her the first time. When she told me the second time that she still did not see them, I was able to accept what she was saying.
At the time of my diagnosis in June 2012, I told my family that I would be totally transparent with them and others because I wanted people to have a better understanding about LBD and other dementia. I have shared a link below to the video with the hope that it will help persons living with dementia. I want them to have a better understanding of what they might experience is real. Also, I would hope that it would beneficial to persons that are helping the person with dementia have a better understanding of what it is like when this occurs. I share this with the FULL approval of my entire immediate family. I have shown it to two of my friends, a nurse friend of many years who is the lead nurse at a Hospice, a friend who is living with Alzheimer's, a care partner and the administrator and marketing director at the Memory Care Community that I visited on Monday.
WARNING: WATCHING THIS VIDEO MIGHT BE DISTURBING.
Video of Robert Bowles - Visual Hallucination - February 15, 2015
©2015 Robert Bowles
Judy and I had the privilege yesterday of visiting Ashley Glyn Senior Living and Memory Care in Peachtree City, Georgia. This is like a hidden treasure that is nestled in a beautiful landscape environment. The back of the the building is fenced in so as to protect the people living there.
I had told my wife that I wanted us to visit Memory Care places so that I could pick where I might want to go, if the need occurred. Yesterday, validated that this was a wise decision. I had talked with Elaine, Gaillard last week for over one hour. She is very educated in dementia and memory loss care. She fully understands what it takes to meet people's needs. We walked into the building and was greeted by a lovely lady at the front desk. She escorted us to their private dining room for our meeting that had been planned.
Judy, Elaine and I began talking about the purpose of us being there that day. Soon, Diane Newton, the administrator came into the room. We had a wonderful lunch that was very delicious. The chef brought our food into the room, and he had the brightest smile on his face. For the next one and one-half hours, we talked about my questions and my passion for helping people with dementia. They answered all of my questions. Finishing this initial meeting, Elaine guided us on a tour of the complex. She even knocked on several doors and asked, if we could come in and see their housing. I was literally amazed at the decor. Stepping into the back yard area, I just shook my head in disbelief. I could not imagine that someone had designed such an environment that would be so safe and pleasurable.
As we completed the tour, we returned to Elaine's office. We spent more time talking about my dreams and aspirations for a better world with dementia....a dementia friendly world. I received a packet of information and an application so that I could get my name on the list, should the need arise. We discussed memory cafes and guardian angels who would volunteer and come into the community and help clients skype. They even asked me, if I would in-service there staff on how to interact and communicate with a person with dementia or memory issues.
All in all, this was one of the best days since my diagnosis in June 2012 of Lewy body dementia (LBD). I was able to not focus on my disease, but make plans on living with my disease. This was a great provision that I am very thankful for.
©2015 Robert Bowles
"Football is like life - it requires perseverance, self-denial, hard work, sacrifice, dedication and respect for authority" by Vince Lombardi
I feel for me to successfully live with Lewy body dementia (LBD), I must have perseverance. It is the highest and lowest roller coaster that anyone could ever ride. The different faces that may appear from minute-to-minute, hour-to-hour or day-to-day is unpredictable. I must stay strong and not allow these events to destroy me.
"Look at Christ, my dear friend; His life was divine through and through, full of self-denial, and He did everything for mankind finding His satisfaction and His delight in the dissolution of His material being." by Makhail Bakunin. That says it all. If I want to be more like Christ, I must deny myself and help others. This allows me to not focus on my trials and tribulations.
"The price of success is hard work, dedication to the job at hand, and determination that whether we win or lose, we have applied the best of ourselves to the task at hand.? by Vince Lomabardi. I must work hard at living with dementia well, if I am going to have a good quality of life.
"I have nothing to offer but blood, toil, tears, and sweat." by Sir Winston Churchill. This says everything to me. With a diagnosis of dementia, I gave up many of my dreams for the latter years of my life. Not wanting to give up, I chose to find new dreams and new aspirations and climb the mountains to achieve them.
"What does it take to be a champion? Desire, dedication, determination, concentration and the will." by Patty Berg. All of these qualities help me as a attempt to be a champion in advocacy for the person living with dementia and the care partners that are in the trenches.
As person living with dementia, I must have respect for many people. Among those are....others with dementia, care partners and healthcare providers. Many times, I see people be disrespectful of those living with dementia. Sometimes, people will tell them that what they are saying cannot be true. For the person living with dementia, it is true. I feel care partners probably have a more difficult life than the person with dementia. For me, I can accept what I am dealing with. All to often, it appears to me that the care partner wants to fix the person with dementia and that will never happen. Healthcare providers and care partners, are doing the best they can with the limited research that has been funded in attempting to find ways to increase quality of life and yes, even possibly find a cure for dementia.
For now, I must stay focused on the things I am doing and time will tell the story.
©2015 Robert Bowles
Abraham Lincoln once said "it is not the years in your life that count, it's the life in your years". Those are powerful words. How do we apply these words to living with dementia.
Each of us who are living with dementia have a choice at the time of diagnosis or at least soon after diagnosis. We can bury our head in the sand and accept the stigma that has been given to dementia for years, or, we can dig our heels in and fight. On the day I was diagnosed, I chose to dig my heels in and live my life to the fullest, as long as possible. I was not blinded to the possibilities that were before me; but, I was determined to be a survivor for a number of years. Fighting through the ups and downs of dementia has been challenging but rewarding because I am able to have so much quality of time with my family.
Doing this has allowed me to get outside of myself and help others living with their disease and help care partners have a better understanding of living with dementia. I would encourage anyone who is dealing with a diagnosis of dementia to dig their heels in, fight like a Georgia Bulldog and enjoyi life to the fullest. You will be glad you did. GO GEORGIA BULLDOGS!
©2015 Robert Bowles
Two interesting pictures! The picture on the left, represents various parts of the brain that are involved with dementia. In Lewy body dementia (LBD), the lewy bodies are also found deep inside the brain along with being in the outer cortex of the brain. The picture on the right, represents the butterfly rash that is often seen in systemic lupus.
Dementia is far more than memory loss. It is living with a disease that is with you 24/7, every day until death. With most other diseases, including cancer, there are cures or medications that can create a remission. In dementia, there is neither. The brain is dying, and there is no cure. The treatments available today that I am aware of, may improve attention, alertness, focus and overall sense of well-being. That is all.
I feel that dementia and lupus have one thing in common. Since the butterfly rash is not always present and sometimes the disease goes into remission, people often see someone living with lupus and not understand how sick they really are. They look at the person and tell them that they do not look sick. I know, first hand. My wife was diagnosed with lupus in 1980. People would come up to her and tell her, they could not tell that she was sick. Living with her and being her primary care partner, I knew the difficulties that she encountered every day of her life during those early years. Fortunately, her lupus has gone into remission, in the last several years. She now has Rheumatoid arthritis though.
People will approach someone with dementia and tell them, they do not look or act like they have dementia. The immediate questions that I ask are, "What does someone look like that has dementia in the early stages?' and "What does someone act like in the early stages of dementia?" No one has been able so far to give me an answer. They tend to say, "I don't know, I just thought" The perception of many leads people to a false understanding of what dementia really is. From my perspective, the memory loss is minor compared to the emotional toll that occurs in dementia.
THE COMMONALITY OF DEMENTIA AND LUPUS IS THAT OFTEN NEITHER ONE OF THE PERSONS WITH THEIR DISEASES, LOOK OR ACT LIKE ANYTHING IS WRONG. When people make the comments mentioned above, they have no idea of what the person that is living the disease is going through.
For now, we must concentrate on better education and understanding of living with dementia.
©2015 Robert Bowles
My blog today is devoted to one of the most powerful writings by a care partner that I have ever read. This was written by a dear friend of mine, Elaine Harrison. She was one of her mother's primary care partners. Her mother had Lewy body dementia (LBD) and recently, died. She is truly is an inspiration to me and Judy, and with us to the bitter end. She is one of my guardian angels.
"My mother passed away on September 13, 2014. She had LBD. She probably lived with this dementia for about eight years (maybe longer, we just did not know how to label her behavior). Our (me and my four siblings) journey with mother was unpredictable and unsettling to say the least. There were many peaks and valleys, and we witnessed mood/personality swings, sometime day by day and sometimes hour by hour or minute by minute. This disease is what I call the 'disease of many faces' because her facial expressions would drastically change when her mood/personality changed.
We spent many years in frustration and tears, experiencing anger, sadness, defeat and helplessness (just to name a few) emotions. We simply did not know how to relate to mother. We lashed out at her in anger and frustration---
not understanding that her moods and actions were REAL to her. It just did not make sense to us, and we wanted her to ACT NORMAL.
When we realized that she could not control her mood/personality swings (THAT SHE REALLY WAS FEELING THE WAY SHE WAS ACTING), we learned how to deal with them, though it was not easy and sometimes we failed. In simple language, we would try to:
+observe her facial expression to determine a particular mood
+adjust our reaction to her mindset and go along with her unless her mood was detrimental to her
+refrain from arguing with her and not try to change her mood
+create a diversion if she was in a violent or argumentative mood
+provide tolerance, patience, understanding, and much LOVE, LOVE, LOVE
+guard ourselves from taking her mood personally
+PRAY, PRAY, PRAY
It is difficult at best for a care partner to provide care to the individual living with LBD. The care partner has to be strong emotionally and physically, if at all possible. Therefore, it is essential that a care partner does everything to maintain the best health possible. If you are a care partner, you have to TAKE CARE OF YOURSELF. If YOU DON'T, YOU WILL FAIL YOUR PARTNER WITH LBD AND NOT PROVIDE ADEQUATE CARE. We all learned that the hard way as many of us actually let THE LBD, that our mother had, control our every thought. This will break anyone down both emotionally and physically. We finally realized that we all had to take time for ourselves and focus on our well-being so that we could provide quality care to our mother."
I feel that Elaine's writing applies to ALL TYPES OF DEMENTIA!
©2015 Robert Bowles
I have a few people that I have told me that I think about dementia too much. Some have indicated to me that it is not good for me and my overall health. Some have even said that I am speaking it and God would not be pleased.
I live with dementia 24/7. I never have a break. If I wake up in the middle of the night, I am reminded that my dementia in some instances is the reason. It takes a cognitive and emotional toll on me. There is no way possible for anyone who does not live with this disease to understand. While I try to minimize the toll, there is still collateral damage; and, it becomes cumulative.
I would pose a question to anyone who would think the things I mentioned in paragraph one. "If you were living with something that affected you, twenty-four hours a day , everyday, "what would you do". The mental exhaustion that takes place can be overwhelming.
Ataxia is defined as the loss of the ability to coordinate muscular movement. This is a common symptom that occurs in the aging process, neurological disease and other diseases.
My blog today will focus on what is commonly called "lewy lean" Lewy body dementia (LBD) is a neurological disease. With my having LBD, I have times that I experience "lewy lean" If I "get up in the middle of the knight to go to the bathroom" with no lights on, I will veer into the left or the right wall. There is no way to predict which direction that I will veer first. When I start veering, I will bounce between both left and right. Finally, I get to the bathroom , finish my business and am able to walk back to the recliner without difficulty.
Anytime that I develop a new symptom with LBD, I attempt to find ways to compensate for what I might be losing. Leaving a lamp on, does not work for me. Our den and kitchen are connected and open. I sleep in the recliner because, I have supine hypertension. My solution has been to leave the overhead lights on in the kitchen and off in the den. This works for me; and, I am able to get a good nights sleep.
©2015 Robert Bowles
Yesterday, I shared some of my thoughts about the need for better understanding of dementia and having additional resources to help care partners. Today, I will give some of my suggestions as to what I think might lighten the burden of care partners.
I feel there are several basic tenants that need to be remembered when talking with someone who has dementia. I would suggest the following tips:
1. Do not talk too loud or too soft, but be sensitive if there appears to be a hearing problem. Always look at them in the eye. It is important not to
change the tone of ones voice. Increasing the tone, may cause the person
with dementia to feel as if, you are frustrated with them. If this occurs, they
will get upset and likely have an inappropriate response.
2. Do not talk too fast or too slow....be distinct in communication.
3. Always provide clear and concise information. If a description is being
given along with what the person is being asked to do, always, give the
the description first and the task last. An example of this might be: "If
it is not any trouble, please take the groceries out of the car", instead of
"Please take the groceries out of the car, if it is not any trouble". If the later communication was given to me, I often would not have be able to remember what I was asked to do, especially if there was a pause. With the second example, I might immediately become agitated and difficult to deal with. Often, I might have been given medication to control my
behavior. In this situation, I did not cause the problem, the person
communicating with me did.
4. Be patient with them......they may be slow responding. If someone
interrupts me, while I am talking, I will lose my train of thought and have no
ideas abut the conversation. This is very upsetting to me, and I will often
5. If the person with dementia is in a group conversation, always try to look
at the person with dementia frequently. This will help them feel a stronger
connection to the conversation. Not doing this, might be construed by the person with dementia as them not being important because of the stigma that is attached to dementia.
6. Distraction in difficult situation can be the care partners greatest tool.
Gently distracted, the person with dementia may become calm.
7. Arguing with someone with dementia will create a very difficult situation
that could lead to the person with dementia becoming very agitated and
hostile. They might even be given a medication and that did not have to
happen. No one, will ever win an argument with a person with dementia.
What the person is saying, is very real to them. It might not be the
truth, but to them it is. My wife once asked me, "what happens, if both of
the people have dementia?" My response to her was, "they have enough
sense not to argue.
I hope these suggestions are helpful. If they are followed, I would greatly appreciate feedback. If there are other suggestions, please share those. I am attempting to develop thoughts and plans that will be beneficial to my family and others. Working together, we can have a huge impact on the care of someone with this horrific disease.
©2015 Robert Bowles
Through my blog today, I am giving my perspective on how to decrease the cost burden of dementia care. There is nothing scientific about this blog. It is simply my perspective.
My emotional state is often affected by that of my loved one. Let me be clear. I did not choose to have dementia; neither, did the loved one chose to be in the position they are in. My perspective is that our country is far behind on education and understanding of the best methods of interacting and communicating with someone with dementia.
My feelings are that most loved ones probably feel, that what they think is best for the person with dementia, may not be the best route in solving many issues. Unless some one lives with dementia, there is not any way possible for them to know what it is like inside the person's body and mind that is living with dementia. There intentions are honorable. They want what is best for their loved one.
As strong as my family structure is, I have found times when events would have been less stressful for all, if there had been a different response. A different response would most likely have produced a better outcome.
I feel the question that must be asked is, "What can we change to produce a better outcome?". I first think about the statistics that have been projected as to the number of people who will have dementia in the future. Looking at statistics, there are several different estimates. I think that I would be safe to say, in 2025, there will probably be around eighty-one million people in the world with dementia. Fast forward to 2050. Based upon some of the projections that I have read, there might be about one-hundred-forty million people with dementia.
The cost burden of this will be devastating. In my opinion, we are so far behind in preparation. We must accelerate the education and understanding of how to communicate and interact with a person with dementia. When this is done, I feel we can greatly decrease the cost burden. It is much like the path that our society follows in alcohol and drug addiction. I feel that placing people in prison with alcohol/drug problems does not solve the problem. It produces repeat behavior. We can improve, by better education and treatment programs, along with recovery groups. Dementia is no different from my perspective. When we provide better education and understanding, we will have better outcomes.
©2015 Robert Bowles
Let me tell you about my wife. She is the love of my life. While working in an independently owned pharmacy prior to my graduation from pharmacy school, this beautiful, red-headed, young lady came into the pharmacy to complete an application for employment. I told the pharmacist immediately that he should employee her because "I know that she will be an excellent employee."
He chose to employ her; and, she was an excellent employee. He must have thought so because he chose to pay for our honeymoon. Fast forward to the present. Eighteen months after selling my pharmacy, I was diagnosed with Lewy body dementia (LBD). Being diagnosed with such a horrific disease altered our plans. I had planned to work until I was seventy years old; however, at sixty-three years old, I began experiencing problems that no physician had been able to establish what might be taking place. Selling the pharmacy proved to be very traumatic for me and a downward spiral took place.
My wife and I have remained faithful to each other for forty-five years this August. During my years of owning the pharmacy, she endured my workaholic behavior. Most always I would work from sixty to eighty hours a week. There were times that I might work one hundred hours per week. I am not proud of that today; but, I am thankful that she stood by my side.
Since my diagnosis in June 2012, we have been drawn closer together. We are still able to dream about our future together. Really, the only the thing that changed is that our love for each other has grown deeper. We take time each day to tell each other, how much we love each other. We are able to talk about the difficult journey that might lie ahead and plan for the best way to travel it..
Even with the emotional roller coaster ride of LBD, I think God that I enjoy every day with my wife. I know without a shadow of doubt that God will provide whatever we might need to face the challenges that might lie ahead. All in all, live is good!
©2015 Robert Bowles
There are many senses within the human body. My blog today will only cover six of these. Using these six senses, I will share the effect each of them have on my journey with Lewy Body Dementia (LBD). The experiences of other persons with dementia may be different. They are simply my experiences. I have heard (do not know if it is true) that when someone loses a sense that some other sense might be increased.
Sight is very important to me and most everyone. Allow me to tell you about my friend Brian Oglesbee. Brian is a high school teacher, golf coach and a motivational speaker. He started playing golf when he was five years old. At the age of sixteen, he had completely lost his sight. Brian never gave up. In 2014, he won the American Blind Golf Match Play Tournament. His comment after winning it was "there are three things that went into winning this tournament: God, my brother, and my swing.....with my swing being the smallest part of the equation". Brian has demonstrated that even though he has lost his vision that he can be highly functional, productive and an inspiration to many people. When I was diagnosed with LBD, I had two choices. One was to give up and withdraw, and the other was to fight like a dog. My adrenalin kicked in, and I chose fight rather than fear this horrific disease. This was probably the most significant decision that I made at the time of diagnosis.
I have started having some vision changes. Nothing major, but I know that he will ultimately increase because of my having dementia. According to the world renowned dementia expert, Teepa Snow, vision starts out with approximately a one hundred-eighty degree field. As we age that field decreases and with dementia, it decreases even more. Often, this reduces to bi-ocular vision. Eventually reaching the point of mono-ocular (only seeing through one eye) vision. I remember my Mom not seeing food or water in front of her. Now, I am able to understand why!
Taste is a sense that may change with dementia. My observations have been there are food that I would never eat before; and, now, I enjoy eating . Likewise, there are food I enjoyed that I no longer want to eat.
Touch comes into play with dementia. Things I touch, no longer feel the same way as they used to. For me, neuropathic sensations (decreased feeling) are an issue.
Loud sounds are one of the most difficult things I deal with. If music is too loud, I might grab both sides of my head and scream. It is as if a pinball machine is being played inside my brain. I have used this analogy and explained to my physicians. It is like the neuron in the brain that is attempting to receive the signal, cannot pick it up, and it pings around, until it finds a neuron that can pick it up. I have had two physicians that have told me that this makes sense.
Equilibrium senses. This is another thing that is extremely present in body. Motor dysfunction seen in LBD creates this. It is very easy for me to lose my balance when I get out of a chair. Sometimes, just walking down the hall in the house, I will veer from left to right and bump into both walls. Fortunately, most times when this happens, I do not fall.
Time sensation. I have always monitored time closely. Even when I was very engaged in my work, I monitored the time of day. I was never a clock-watcher.
I was just trying to complete as much as possible within a given time frame. Looking at a clock and determining the current time is not an issue for me at the present. Engaging in projects such as writing my blogs takes a lot of time every day. Often times when I finish, it is has taken two hours on just one blog. This occurs because my thinking process has greatly diminished. My memory is largely in tact; it takes me longer to retrieve it.
Normally we think about all of the changes as being a problem. I choose to not look at it that way. So far, I have been able to establish compensatory methods of accommodating the situation. By doing this, I am able to bask in the glory of my accomplishment and enjoy the scenery at the mountain top.
©2015 Robert Bowles
"Do I really have dementia?" This is a question that I have been ask many times since my diagnosis of Lewy body dementia (LBD) in June 2012. It frustrates me that people, including physicians, seem to have such limited education and understanding about what it is like to live with dementia. Now, almost three years after my diagnosis, I still have people ask me this question. One of my daughters just last week asked me, "if I really thought I had it". When people ask me this question, I suggest that they come live with me for a day or two.
There is so much lack of understanding about the fact that most people with an early diagnosis of dementia can still do very much. While I am three years removed from my diagnosis, I am still highly functional. I am presently experiencing almost every symptom that is listed on the Lewy Body Dementia Association (LBDA) website. I still have one physician that tells me , he is having a difficult time thinking that I have LBD. I have also suggested to him that he come live with me for a day or two.
One part about LBD and other dementia, is that there are moments of symptoms in the early stages, and they take a vacation for a short period of time and return. People do not seem to understand this. I have decided that most people, including physicians, move from diagnosis to the final chapter and want to wash their hands.
At the present time, I am managing a Facebook Page for Forget Me Not - Lewy Body Dementia, managing my personal Facebook Page as well as my Facebook Page, Lewy Body Dementia - Living Beyond Diagnosis. I manage my website that I started three weeks ago. On this website, there are ten different pages. I share a blog of my journey in living with LBD, a blog about the impact my faith has on my journey, videos, pictures and much more. I provide YouTube vidieo clips by Teepa Snow about dementia care and much more. I am on a national webinar at least twice a month with Alzheimer's Speaks. Twice a month, I am on a national program, Dementia Chats - Ask the Experts. I have been on the national program, "Conversations in Care" and soon will be on Gary Joseph LeBlanc program, "Common Sense Caregiving".
Recently I started a Memory Cafe in Thomaston. Soon, I will be starting another Memory Cafe in Thomaston, Newnan and Griffin. Wendy's Thomston will be my first dementia friendly business. Soon, I will have volunteers going into LTC facilities and helping residents, with or without dementia, virtually interact with their families every week. I will be calling these volunteers, Purple Angels. I go to Virtual Memory Cafes at least twice every week; and, I have mentored persons with LBD, inside and outside the United States through Dementia Mentors. The joy that I receive in doing this, is beyond explanation. I receive far more blessings that I could ever help those whom I mentor.
It is important to me for you to keep all of these comments in perspective. It is not about me. It is about the fact, that with early diagnosis of dementia, a person will most likely have reasonably good quality of life after diagnosis for a whle. Getting this message across is a passion of mine. I believe that with acceptance of the diagnosis of dementia, socialization, attitude and purpose, someone can have a reasonably good quality of life. There are days that I spend no time on advocacy because I feel so bad; however, there are days that I will spend sixteen hours on advocacy because I am at the top of the mountain. The mountain top experiences are an awesome feeling. They propel me to move ahead with my purpose in life.
I often think about the wounded warriors. I think about those that have lost their life so that I could have freedom. I think about those that came home with PTSD or amputations and those that have lost their families because of what has happened. As I think about these things, I am motivated to forget about myself and focus on helping others understand, THERE IS LIFE AFTER DIAGNOSIS.
©2015 Robert Bowles
Our Purple Angel Memory Cafe Thomston brings so much joy to me. In January 2015, I started my first memory cafe. At our first cafe, we had eight people. The second cafe, there were twelve people. Yesterday, we had twelve people again. Four other people were not able to be there due to conflicts. At every cafe, there are new people showing up. People are crying out for help and social interaction. They want to now that they are still loved and valued. These are two basic emotional needs that are too often missing in our society today.
People are crying out for help because our healthcare system has failed. So many times, I hear someone tell me, "I went to the doctor, he told me I had dementia, gave me a prescription for Aricept, get your affairs in order and come back and see me in six months. Often times, they are told nothing else. When I hear these comments, many questions come into my mind. I will cover a few of these in this blog.
It appears to me that healthcare providers jump to the final chapter. Only God knows when the final chapter will be written. Until then, our healthcare system needs to provide better education and resources for the person with dementia (PWD) to have a better quality of life. Receiving a diagnosis of dementia is devastating. Plans that have been made for one's life are often shattered. With no resources or guidance in-hand is frustrating. I have chosen not to be a "stastic", but to fight for all PWD. They deserve the best.
There are three main questions that come into mind. "When will our healthcare system realize there can be years of quality life, especially when the diagnosis is early". When will more physicians learn how to communicate and interact with a PWD?" "When will they provide resources to the patient at the time of diagnosis?"
The emotions of being giving a diagnosis of dementia must be calmed before the PWD can ever start to have a better quality of life. As long as I am physically and mentally capable, I will never stop fighting for those of us who have dementia.
©2015 Robert Bowles
This one minute and seventeen second video is the best description of LEWY BODY DEMENTIA (LBD) that I have ever seen. Click on the LBD link on the previous line
©2015 Robert Bowles
Finding ways to compensate for adversities of Lewy Body Dementia (LBD) can be challenging. I am fortunate that the feelings and sensations in my body are very evident to me. Usually, I can describe them in a way that others can understand. Being able to do this, I usually can quickly find a way to compensate for the challenge that is before me.
Car rides have become stressful to me. My wife is my chauffeur. She is an excellent driver; however, the bumps and turns in the road create chaos in my mind. I have to assume that this is because of the motor symptom component of LBD. I have failed the "Romburg" test. The "Rhomburg" test is used in an exam of neurological function, and also a test for drunken driving. Strangely, I have never had a drink of alcohol in my life. I promised my mother that if she did not make me eat green beans that I would not ever drink. She didn't, so I wanted to honor her. My daughter, a former agent with the Georgia Bureau of Investigation, drove us to our last neuroloigst appointment. She told my wife that I would not have passed the "drunk driving test" As they did the retropulsion test (helps evaluate Parkinson symptoms), I fell backward and would have hit the floor if they had not caught me.
The balance issues have caused problems in several situations. This being one of them, I needed to find a way to compensate. While my wife is driving, I usually am on my iPhone and following my Facebook pages and my website. Finally, I realized that not being on my iPhone during the twist and turns and bumps in the road would calm the motor dysfunction that I was experiencing. Simple solution but frustrating not to be able to be busy. I'm thankull that I can usually find a solution for each challenge that rears its ugly head.
©2015 Robert Bowles
My blog today represents just one day in my life with Lewy Body Dementia (LBD) and my wife's life in being a care partner.
I told you when I started my website that I would share with you, the good, the bad and the ugly. Today is the ugly. I hope you can enjoy the blog today and laugh as much as Judy and I have laughed. Laughter is the best medicine for this horrific journey.
Unless a care partner is experiencing dementia themselves, there is no way possible for them to fully understand what it is like, living with dementia. They know what it is like to be a care partner. I now know what it is like to be both a care partner and now, a person with dementia (PWD). They are two entirely different roles. Both carry so much pain, but they also carry so much joy. Care partners frustrations are different than the PWD. Victory will have occurred when there is better education and understanding on how to communicate with a PWD. Unfortunately, during the years with my Mom and Dad, resources were not available and still are very limited. It is not the fault of the care partners. Our healthcare system has failed us.
We are years behind on reaching the level of understanding how to communicate and interact with a person with dementia. Teepa Snow very eloquently teaches through her training, skills that are necessary to make the lives of both the PWD and care partners, the best it can be. Her training videos are available on Amazon. Unfortunately too many families have not seen her resources. I feel that we are behind because of the stigma that has been given to dementia. Now, we are seeing PWD step forward and share their life experiences. It is time to come out of the closet and be honest, so that the lives of others might be better. I believe that better education and understanding will lead to better outcomes for both the PWD and the care partners.
Last Friday was filled with tears and laughter for both myself and my wife. We started at 7:15 AM, driving to Macon, Georgia to visit the dermatologist. Both of us had appointments. The dermatologist did a biopsy on my wife's leg and on my nose. We returned home at 10:30 AM. My wife has both systemic lupus and rheumatoid arthritis so she took a nap until 1:30 PM. Leaving the house at 2:00 PM allowed us time to drive to Fayetteville, Georgia for a 3:40 PM appointment with a gastroenterologist.
The visit with the gastroenterologist was very frustrating. In the exam room, my wife was sitting at 12 o'clock, I was sitting at 3 o'clock and the doctor was leaning against the exam table at 9 o'clock. As the physician began his exposition on his treatment plan, with a stenographer in the room, he looked directed at my wife the entire time. I raised my hand and asked if I could ask a question. He immediately said "NO, I will lose my train of thought". I reviewed the visit summary as we drove back to Thomaston. There were no answers to the questions that I would have asked. I asked myself, "who can recover better, the PWD or the physician?" I know the answer, apparently, he does not.
I followed the physicians instructions exactly as he had directed for Friday night and Saturday morning. Monday morning I began the prep for me to have a CT scan with contrast. Many years of my pharmacy career was spent in medication evaluation, side effect evaluation, lab monitoring and making suggestions to physicians for drug selection in LTC facilities.
My review of the lab results and the radiologist report did not offer any significant findings as to the symptoms, I was experiencing. I even talked to my former college roommate. who is Professor Emeritus at a major medical school. After that I talked with a thirty-five year friend who was in family practice. Neither of them could put the puzzle together. Still, the gastroenterologist had not called me.
Even amidst all of these frustrations, Judy and I have been able to share with each other, tears and laughter. Hopefully, tomorrow I will receive a call from the gastroenterologist and have a plan that will resolve my symptoms that I am experiencing.
©2015 Robert Bowles
Robert Bowles, Jr.