Changes that occur in the lives of a person with dementia (PWD) are often overwhelming. Each of us have varying abilities that change from time to time. These changes occur over time. Then, one day, we realize just how much things have changed. At least, it is this way for me as I live with dementia with Lewy bodies (LBD).
As we accept our diagnosis, we must also learn to live with our diagnosis. Living life to the fullest most often will provide a better quality of life. Part of the equation of a better quality of life is accepting the changes that take place and not letting them drag us down. I always attempt to find a way to massage the changes that might occur in my life. Sometimes, I am able to simply make some minor adjustments. The worse case scenario is that I can no longer do the same thing.
Allow me to share with you two illustrations. Approximately six months ago, my cognition was changing very quickly. It had reached a point that the change would occur sometimes within minutes or hours. This is very common in LBD even in the early stages of the disease. Realizing that this was occurring, I gave me wife my car keys and told her that I would never drive again. This was probably the most difficult thing that I had dealt with since my diagnosis. I knew though that it was the right thing to do because I did not want to have an accident and hurt or possibly take the life of someone. When I was in the car, I always drove unless I was physically unable to drive. I dealt with this by thinking about the decrease stress that would be in my life by me not driving and the joy of someone else driving for me. This past Christmas, one of my wife's Christmas gifts was a chauffeur's caps. I have never thought a second time about giving driving up.
My friend, Harry Urban in Pennsylvania, is an avid wood-worker. He always loved to craft beautiful furniture and other things. He reached a point, where he no longer could use power tools. He adapted quickly. Just like me, he refused to let his disease rule his life. He started crafting smaller pieces of wood-work by imagining what the finished project might look like. As his work progresses, his work flows and changes are made based upon the appearance of the project. Recently, he started creating a wooden pen. In the end, he had created six different pens, all with different designs. Each time he finishes a project, he has climbed another mountain. His wood-work is gorgeous.
Wherever we are in our disease process, do what we can with what we have. When we do this, we will have a better quality of life.
©2015 Robert Bowles
Tau Is Driver Of Alzheimer's Disease
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Clinical Trial Hailed As Game Changer For Alzheimer's
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Flip Wilson once said, "You can't expect to hit the jackpot if you don't put a few nickels in the machine".
When we accept a devastating diagnosis such as dementia or any other terminal disease and seek ways, to continue living to the fullest extent possible, I believe there will be better outcomes. This does not mean that we will not have complications, health issues or other things to deal with that are just part of life. I believe that this acceptance serves as catalyst for us to become more social.
We are able to learn more about dementia from reputable websites and persons living with dementia that can propel us into a better understanding of what might lie ahead and prepare us for our journey. We are able to develop a strategic plan or "game plan" for having fun with our family and friends. Personally, I know that I will lose some abilities through my journey with dementia; however, each time this occurs, I attempt to find something to replace the loss with.
I was a care partner for both my mom and dad who had dementia. I feel this path is good for both the person with dementia (PWD) and their care partners. The PWD can attend support groups or memory cafes with their loved ones. They can attend virtual memory cafes through Dementia Mentors. You can request a mentor at Dementia Mentors. Presently Dementia Mentors virtual memory cafes are available on Wednesday's at 11 AM and Friday's at 1 PM, Eastern Time. Click on the link to request being a part of the cafe.
I would suggest that if we have a better quality of life for a number of years, we have truly hit the jackpot.
Let's all work together to find a better path for both the PWD and the care partners. We can do it!
Blessing to all, Robert
©2015 Robert Bowles
The graph above indicates the typical decline in cognitive status for Alzheimer's, vascular dementia and dementia with Lewy bodies. This graph is not intended to represent life expectancy, but the pattern of the cognitive status decline.
As you see with Alzheimer's, it is a slow and steady decline. According to the Alzheimer's Association, Life expectancy is two to twenty years with an average of eight to ten.
Vascular disease is much like stair stepping. There is a correlation between the vascular events and the decline in the disease process. As you can see above, the frequency of the decline varies based upon the frequency of the events. I was unable to find definitive estimates of life expectancy with vascular dementia.
Dementia with Lewy bodies presents an entirely different picture. The chart above indicates the "roller coaster" ride that takes place with DLB. There are periods of decline, plateaus and improvement with an overall unpredictable decline. According to the Lewy Body Dementia Association, "the average duration of LBD is typically five to eight years after onset of obvious LBD symptoms, but may range from two to twenty. It is important to remember this disorder progresses gradually over years, not days or months".
Early differentiating symptoms are shown in the chart at the very top of this blog. The is a comparison of decline in thinking abilities, planning or problem solving, sense of direction or spatial relationship, language problems and fluctuating cognition early in the disease process. The chart is reflective for LBD, Alzheimer's and Parkinson's.
Blessing to all
©2015 Robert Bowles
Living with dementia takes a lot of courage. There are so many emotional battles that often are more difficult to deal with than the memory loss itself. For those of us living with dementia, we must forge ahead and have the courage to live our lives to the fullest extent possible.
The choice is ours. What will we do? I have chosen to embrace two mantras that I have established for my life. (1) I don't have time to die, I have too much to live for" and (2) "Live life to the fullest, Live life like never before".
Let's ALL work together to make this world a more dementia friendly place to live. After all, many of the things that will be beneficial in interacting and communicating with a PWD are beneficial to everyone with or without dementia.
Let's keep the ball rolling!
Blessings to ALL
©2015 Robert Bowles
Each person living with dementia has their own personal struggles that they go through. Often times, the struggles are unpredictable. I have always tried not to worry, but to live life on life's terms. That is not always easy though. Within days of receiving my diagnosis, I began thinking about the impact that my disease might have on my family. Likely, one might think about what will my journey be like and how long will I live. What will the end be like?
There are the ever present financial concerns because of the enormous cost of dementia care. For many, there are the financial burdens of paying rent, utilities and food. Legal concerns must be addressed. There is much more that I could include, but I will stop with these. Often times, these issues and others are enough to cause someone to become depressed.
I subscribe to the quote above. I feel there is a difference between being concerned about something and worrying about something. I feel that it is essential to accept life on life's terms in order to maintain health and happiness. This is not always easy. As I was praying one night, soon after my diagnosis, I told God that I could not carry all of the burdens that are implicated with a diagnosis of dementia. I knew that it would drag me down and I would become depressed. It took a lot of prayer for me to let go; but, it worked.
Fortunately, I have been able to reach a point of not really worrying about anything; however, I remain concerned about what my family might have to endure. Mostly, I have peace about what might lie ahead. Whenever the difficulties occur, I will attempt to hit them "head on" and keep forging ahead. I am not quitter.
Blessings to everyone.
©2015 Robert Bowles
March roars in like a lion
The wind so cold
It seems to pierce.
The month rolls on
And Spring draws near,
And March goes out
Like a lamb so dear.
Author - Unknown
In my life, I feel this poem applies to Lewy body disease (LBD). I feel it applies to a greater extent in dementia with Lewy bodies (DLB) which is one of the two types of dementia under the umbrella of LBD. The other one is Parkinson's disease dementia (PDD).
My increased autonomic dysfunction symptoms started increasing in late, mi-February. A failed attempt in the ER at a large hospital yielded no answers except, "go to Mayo". As March started, Lewy started roaring in like the fierce cold wind. As March continues, Lewy reminded me in my body that the winds were not settling down. They were getting stronger. Even my osteoarthritis pain increased and the Raynoud's symptoms increased. All chaos broke loose.
Today, March 24, 2015, I hope the winds have reached their peak. They have just about blown me over. According to the Mayo Clinic website, Multiple System Atrophy has several general signs and symptoms. These include postural (orthostatic) hypotension, dangerous high blood pressure while lying down, urinary and bowel dysfunction, reduction in perspiration, impaired control of body temperature, agitated sleep due to "acting out" one's dreams, abnormal breathing at night, sexual dysfunction, irregular heartbeat and difficulty controlling one's emotions. At least my blood pressure and heart rate are reasonably stable.
After the symptoms this morning had reached a peak, I had a long talk with Lewy. He definitely is not the brightest block in town. He confessed that he struggles in life. After scolding him for almost two hours, he told me that he was leaving and going on vacation and out like a lamb. In the past he has not always honored his promise to go on vacation. I'm claiming that he will go on vacation this time though. I will have to wait and see. Maybe by the first of April, Mayo will have a cancellation and I will be able to visit them.
© 2015 Robert Bowles
This morning upon awakening, I told my wife that last night was a night from "hell". It was probably one of the most difficult nights that I have experienced since my diagnosis of dementia with Lewy bodies (DLB) in June 2012. At the time of my diagnosis I was experiencing every diagnostic symptom listed on the LBDA website. I had experienced the cognitive issues, motor symptoms and the psychiatric symptoms that are core to Lewy body disease (LBD). LBD represents the umbrella for dementia with Lewy bodies (DLB) and Parkinson's disease dementia (PDD).
Last night was chaotic, consisting of four and one-half hours of sleep and four hours of being awake. These periods of time were broken up into four periods of sleep and three periods of being awake. Each time I would wake up, my eyes would barely open and my eyelids were swollen.
Because of osteoarthritis in my hands and the Raynaud's Disease that I have in addition to the DLB, I wear gloves on both hands while sleeping. The hands continued to be uncomfortable as well as my back due to cervical disc disease and a Pars Defect in the lower back thus making it difficult to sleep. The ever present nasal congestion was alive and kicking.
As I would get up to go the bathroom, my balance was compromised and I would veer into the left and then the right wall in the hall. My legs were weak and wobbly.
My Autonomic Dysfunction, in addition to the DLB was very active. The ones last night included, stomach growling, passing gas both ways, constipation, diarrhea, gait and balance were active most all night. The blood pressure and heart rate that can be part of autonomic dysfunction were not problematic last night as they have been in the past. I am presently waiting for my appointment at Mayo Rochester, Minnesota.
The emotional and psychiatric roller coaster ride is overwhelming for me sometimes. The emotions of pain, anxiety, frustration, concern for family and what they are going through with our journey are stressful. I rarely focus on the dementia component of my disease. The dementia component fails in comparison to the physical components which I live with. I pray for my family every day that God will sustain them through our journey. I started crying last night as I thought about my family and what they were having to endure. Our comfort comes in knowing that God will sustain us through whatever we must go through.
I am thankful that I have had total peace with my diagnoses and what I live through from the very beginning. There are several things that I stay focused on that enable me to have a positive attitude. Phillipians 4:19 says, "And my God will meet all of your needs". I have several mantras that I remind myself of daily. (1) I do not have time to die, I have too much to live for, (2) Live life to the fullest, Live life like never before", and "It is what it is and everything will be OK'.
© 2015 Robert Bowles
Take me out to the ball game
Take me out with the crowd
Buy me some peanuts and crackerjacks
I don't care if I never get back
Let me root, root, root
For the home team
If they don't win it's a shame
For it's one,
Three strikes you're out
At the old ball game
This weekend my son, Alex, and I traveled to Orlando, Florida to visit the Atlanta Braves Spring Training at ESPN Wide World of Sports. This was a fabulous time together that allowed me to get away from dementia and dementia advocacy and just have a lot of fun together. Half-way down the road, we stopped at Cracker Barrel for our evening meal. By the time we got to the Hilton Hotel, we were ready for bed.
Saturday morning, we woke up early and departed for ESPN Wide World of Sports. This is an incredible facility with so much that someone could enjoy. We toured the facility, shopped and ate lunch. I purchased a ticket for me to go down to the field for their "field experience". I was able to get a few baseballs autographed and even got one for my friend Harry Urban who is a baseball fanatic. He has promised me that he and Hazel, their daughter and son-in-law are coming to see Judy and me after tax season. I told him that I had an autographed baseball plus something else waiting for him and that the only way he would get them was to show up at my house (lol). He probably thinks I am trying to bribe him. (lol)
The Braves got off to a slow start but ended up winning the game 5 to 2. We stopped at the nearest Best Buy after leaving the stadium to purchase some new computer equipment for my office. I like to have everything at my finger tips and like efficiency in operation. I was able to get a 32" computer monitor so that I could connect by new Microsoft Surface computer to a larger screen.
We got home at 9:30 PM, tired and ready for bed. Sunday morning, Alex started connecting all of my computer system together. I shared a picture at the top of this blog of how I now have things set up. I hope this will make me more efficient.
This has been a fabulous weekend and a time to break away from the roller coaster ride of dementia with Lewy bodies. It was a good weekend because "Lewy" went on vacation just as told him to before we departed. I have been blessed so much to have a loving and caring family that unconditionally loves me, cares for me and struggles through my dementia with me. Certainly, there are ups and downs for all of us; but, we choose to fight it together.
©2015 Robert Bowles
Recently, my cognitive neurologist told me that I needed an internist who could manage a multi-system disease such as dementia with Lewy bodies (DLB). Since my regular internist is battling cancer, I have been able to find another internist quickly and was able to see him Friday.
My new physician has treated several LBD patients and was well versed in LBD representing Lewy body disease. Further, he was aware that DLB represented dementia with Lewy bodies and PDD represented Parkinson's disease dementia which are the two types of dementia under the umbrella of LBD. I had spent three to four hours preparing for my office visit. Everything was organized starting with seven years prior to my diagnosis of LBD in June 2012. Three months after diagnosis, my neurologist started referring to my dementia as DLB. I had documented my fifteen month path to diagnosis. The list of medication sensitivities that I have experienced were numerous. I provided him printed information about medication from LBDA. He was amazed at the list of things that I am able to do almost three years after my diagnosis.
I reminded him that there was life after diagnosis and that the final chapter had not been written. He found my acrostic ASAP squared to be interesting. His comment was that is a good path to follow after diagnosis. He smiled when I told him about two of my many mantras. "I don't have time to die, I have too much to live for" and "Live life to the fullest, Live life like never before". Judy commented to him that I had collated the documents. His response was that he would have expected that I would have done that.
The appointment abruptly ended after forty-five minutes; not because he or I was ready for it to stop, but because the hospital had called him about two patients needing to go into ICU. The appointment went so well because I had prepared for the visit and he intently listened to the written word and my verbal communication. He literally soaked it in with minimum interruptions. If he needed a better understanding about something, he would ask me questions.
As he was walking out of the exam room, he told me that he would always be there for me. When Judy and I got into the car, she said "that is the most intently engaged physician that I have ever seen". She said I normally get anxious when I go with you to the doctor because you talk so much". Following up with that comment, she said "I was not anxious about anything because I saw him smiling and intently listening to what you were saying and reading the material that you had provided him.
It is such a blessing to have a physician that understands LBD and is able to take time to listen and be engaged in all that is taking place.
© Robert Bowles
Mother Teresa once said, "if you can't feed a hundred people, then feed just one".
When seeing this quote, most of us probably think about feeding people or animals with food to provide nutrition to them. I know that is what I usually think of. For a moment, let's think about a broader meaning of the word feed.
I hear many persons with dementia (PWD) and care partners say, "I want to help someone else with dementia" or "I want to help another family that is caring for someone with dementia". Sometimes, the next thing I hear is that, "I don't know how to do this" or "I am not able to do anything". Personally, I know that if I help someone, I will always feel good about it. Helping someone without the desire for personal compensation brings much joy to me. Let's look at a few different meanings of the word "feed".
(1) "To provide for consumption, utilization, or operation". Let's think about utilization. Most of us who are living with dementia or taking care of someone with dementia have learned something about the symptoms of dementia and at least a little bit about the disease itself. I believe that care partners and PWD, especially in the early and mid-stages of dementia can provide personal insights that will enable a newly diagnosed PWD to "utilize" that information and have huge impact on their journey.
(2) "To minister to; gratify'. There are so many ways to "gratify" someone. Just a few of these might be to; send a card, wish them a happy birthday or anniversary, take them some food or buy them some, small gift. Once again, we have chosen to "feed someone"
(3) "The transmission or conveyance of published content". With computer technology today, this is very powerful. Those individuals who are computer savvy, can go to the internet and find reputable sites with information about dementia. It is important for it to be reputable site. When we do this, we can "feed" others with information about dementia.
These are just three meanings of "feed". When we use anyone of these, all of these or some other means of "feeding" someone with dementia, we can "feed", one person or one-hundred or more. We all have something that we can do to help others. One of my mantras is, "help just one person today".
©2015 Robert Bowles
The above quote was by Jack London. I have several books of quotes and enjoy reading them. There are so many quotes that apply to life in general. I love finding quotes that relate to various situations that occur in my life. Now
am intrigued with quotes that can be applied to my journey with dementia. My dementia is of the Lewy body type.
When someone receives their diagnosis of dementia, their entire being is shaken like an earthquake. It is so overwhelming. A flood of emotions encompasses the mind and body. You feel numb and speechless. It is difficult to make the transition from diagnosis to "game plan" for living. I would suggest that waiting only robs someone of valuable time that can be used to develop that "game plan". The longer that it takes to develop the "game plan", the longer it takes to start "LIVING". After the "game plan" is developed, we can begin living life to the fullest again. I know it took me fifteen months after diagnosis to start having peace, joy, fun and so much more, than what I was experiencing just before and after diagnosis I was not experiencing any of those things.
There are so many things that I am now able to enjoy and cherish that I never had time for before. This is sad, but, true. Chandra Wilson, once said, "Our happiness is certainly mixed with tragedies of life. You have to find the lemonade. You have to find the silver lining in the middle of everything that happens in life,"
I would suggest that the sooner we are able to do this, the sooner, we will be able to live life to the fullest.
©2015 Robert Bowles
Part 1 yesterday and Part 2 today.
When mentoring a PWD, I like to share with them an acrostic that I think is helpful in achieving better outcomes in the early and mid-states of dementia. The acrostic is "ASAP" squared. "As soon as possible, ACCEPT the diagnosis. This does NOT mean passively accepting the diagnosis. At the time of my diagnosis, I told my wife that "it is what it is and everything will be okay", ten minutes after my diagnosis. I was able to do this because, I had seen eight physicians in fifteen months without an accurate foundational diagnosis. I had received four other individual diagnoses and no one was collectively finding the ultimate carrot. After visiting a memory and cognitive center at a major teaching facility, I was able to receive my diagnosis of LBD. Three months later, I felt as if I was a convicted murderer. The physician had issued the charges and the jury had found me guilty. The judge had issued the death sentence without appeal. At this point, I had TOTAL ACCEPTANCE of my diagnosis and the long term implications. Over the past two years, other physicians have had difficulty acknowledging that my diagnosis at the memory and cognitive center center was correct. In fact, one physician emailed my neurologist about two months ago and expressed that he did not see LBD as being present. My neurologist responded to him by saying that everything taking place leads him to my diagnosis of LBD. When this occurs, it creates an emotional roller coaster for the patient.
Maintaining equal or greater SOCIALIZATION is essential. Finding purpose in life after diagnosis has enhanced my quality of life since diagnosis. Memory cafes, both in-person and virtually through Dementia Mentors, can have a huge impact on improving one's overall sense of well-being.
ATTITUDE is huge. Each of us have a choice when a diagnosis of dementia is given. We can bury our heads in the sand and drown with emotional distress and depression, or, we can have a positive attitude and minimal, if any negativity. A positive attitude for me has proven to be a catalyst for me enhancing my overall quality of life. I rarely think of anything negative. If something comes into my mind that is negative, I choose to quickly remove it.
All of us need PURPOSE in life. We need to establish what our purpose in life is after diagnosis. For me, it was the same purpose that I had when practicing pharmacy, helping others in a health-related manner. Others might have a purpose that is different than their purpose prior to diagnosis.
I shared in an earlier blog that I would offer my thoughts as to how the best outcomes can be achieved and the lives of all parties made better. I feel that "ASAP" squared can be utilized for care partners just like the PWD. Often, I see care partners appear to not have come to a COMPLETE acceptance of the diagnosis and the long-term implications of the diagnosis. With all of the demands that are placed upon the care partner, they tend to neglect themselves because of the love that they have for their loved one. When this occurs, there is a likelihood that depression will follow and a decrease in overall sense of well-being will occur. With so much stress from being a care partner, it is difficult to maintain a positive attitude. Time constraints placed on a care partner makes it difficult to find purpose in life other than carrying for their loved one.
WOW! All of that is enough for ANYONE to throw up their hands and feel like screaming, crying, running and giving up. There appears to be nowhere to turn. My suggestion for care partners is that they follow the acrostic "ASAP" squared. I believe that when this is applied to their lives, the lives of both the PWD and the care partners will be better. Hopefully, some will be wiling to try this and give me some feedback. There is a lot that I do not know, and I continue to search for better methods of understanding and application for both the PWD and the care partners. Working together, we can ALL make a difference and have a dementia friendly world.
I believe that when the PWD and the care partners interact and learn from each other, there will be better outcomes. The care partners must be willing to listen to the PWD share what is taking place in their lives. Now, the care partners have to differentiate between the different perspectives of the two parties; however, the best results will most likely occur when the perspective of the PWD is primary. Unless the PWD dementia is at risk for their own health and well-being, better outcomes will most likely be achieved by seriously considering what they are expressing.
After this occurs, care partners need to be sure that they understand what has taken place. If the care partner does not feel that they understand, most likely further discussion will help. After understanding is achieved, the care partner will need to accept the changes that might need to take place in the care of their loved one, if they are appropriate. No one will ever win an argument with a person with dementia. The PWD cannot be fixed or argued with. Their perspective is simply their perspective. Fortunately for me and my wife, I have been able to accept the differences all but twice. On both of these occasions, I was able to say okay after the second time. If there was continued attempts to change my perception, I would most likely become agitated and be erratic in my behavior. Medication, most likely, would NOT be necessary, unless continuous efforts of attempting to change my perception took place. After accepting the changes, implementation must take place on the part of the care partners. Consistency is very important. When all of this occurs, I feel that better outcomes will most likely be achieved.
Certainly, it will not always work; however, I suspect that it will work most of the time. There will always be times when medication is the most appropriate response; however, it should be as a last solution. I pray that everyone will have more peace in their life through this difficult and often horrific journey.
©2015 Robert Bowles
My blog today is in follow-up to my blog on March 14, 2015. I love to use the term care partners instead of of caregivers. I feel that my team of care partners consists of my wife (as director of the team), my physician, myself, my family and any other persons involved in my overall care. Care partners are helping hands and hearts. I love care partners, and I know they are doing the best they can under the circumstances that are taking place. As I mentioned in an earlier blog, I was my mom and dad's primary care partner. My sister lived six hours away and would come about four to six times each year and stay for several days each time. Dad died at age seventy-nine as a result of a stroke that affected the brain stem. Mom lived until age ninety. The last three years of her life were very difficult for her, my sister and myself. I have Lewy body dementia (LBD), and the roller coaster ride started early in my disease process. Mom never experienced a roller coaster ride during her fifteen year journey with Alzheimer's. It was a slow and steady decline.
My passion is in helping persons with dementia (PWD) understand their disease and helping care partners have a better understanding of dementia and the tools that might help all parties involved have better outcomes. I spend a lot of time, using my healthcare knowledge and pharmacy education to find solutions to a dysfunctional healthcare system. In my pharmacy practice, my patients would come to me or my daughter and ask us to help them navigate their own healthcare because no one else was doing it. Our healthcare system continues to fail us and especially in the arena of dementia care. Dementia cost were estimated in 2013 to be 203 Billion dollars annually. Teepa Snow, the world renowned expert in dementia education, does an incredible job with her videos and live educational seminars. Her videos can be found on Amazon. Our society and especially our government have failed to provide much needed education and resources that would most likely decrease the cost burden that is occurring in dementia care and diminish the number of families that are breaking up as a result of dementia being involved.
The thoughts that I am sharing today are the result of my mom and dad both having dementia, and my being their primary care partner. Now I have LBD and I see first-hand through a different set of lenses what the care partner is experiencing. It breaks my heart when I think about the impact of my disease on my family. My family does does NOT deserve what they currently experience or what may take place in the future. My family is strong, cohesive and are all on the same game plan. Unfortunately, every family does not have this. Coupling my experiences together with my family's experiences has given me new insights. Also, I practiced pharmacy for forty-two years.
Caregivers Are Helping Hands And Hearts - Tomorrow - Part 2
©2015 Robert Bowles
Just returned home from Macon, Georgia to find my Tulip Tree looking the prettiest ever.
While in Macon, I met with Congressman Buddy Carter from Pooler, Georgia . He is the only pharmacist in the United States Congress. He has full understanding of what is happening in Medicare part D prescription drug coverage. These changes are now adversely affecting the patient.
I had the opportunity to meet with him, his staff assistant, and Tommy Whitworth, the incoming President of the Georgia Pharmacy Association. Hopefully, I will be able to go to Washington to testify before a committee.
There has been a lot of changes in Medicare Part D drug coverage that has increased out-of-pocket expenses for the patient. These changes have accelerated during the past two to five years.
Rep. Carter will take the notes that I gave him and review them. After reviewing them, he will contact me to discuss my concerns. It was a great day.
©2015 Robert Bowles
Caregivers are very near and dear to my heart. There is a very special place in heaven for them. I know what it is like to be a caregiver. My mom had Alzheimer's and my Dad had vascular dementia. My sister lived in another state, and she did everything she could. She always checked on them many times each week by telephone. Four to six times a year she came to see them and stayed several days with them. My sister was my lifeline for me as I was our parents primary caregiver.
I have told my wife many times that the only fear I had with our journey was what she and my entire family might endure. They deserve so much more than having to deal with this horrific disease. Please understand, I know they want to do what they are doing. They are doing it because they love me and I love them. That said, no one should have to go through this.
I have total peace because I know what my future is, and I know who holds my future. On the other hand, the person/persons who are providing care for their loved one are doing the best they can do. The enormous pressure they are under, often has a very negative effect on their health and well-being. Often, depression occurs which only complicates all that they are going through. Many times, caregivers are torn between providing care for not only their immediate family but also care for their spouses immediate family. Then, there are those situations where the adult children of the primary caregiver are having significant issues in their lives. Take all of these factors together, put in pot, stir them up, and , it is no wonder, that large number of families facing dementia care, encounter elements of family breakup.
I have spent signifcant time thinking about this situation using my experiences from caring for my mom and dad and now me with Lewy body dementia (LBD). I have spent this time because of my love and respect for all caregivers. Their job, often is a thankless. Sometimes, the only joy they might have is in knowing that they have do a good job. I think that I have reached some possible solutions that might help create a better life for both the caregiver and the person with dementia.
I will share those thoughts soon.
©2015 Robert Bowles
Yesterday was a great day at the Thomaston Memory Cafe. We had new people at the cafe and even had an LBDA volunteer who telephonically provides inisights about LBD to others. Her husband died last year, and she is now using her knowledge as an RN to help people with LBD and their care partners move through the maze of this horrific disease.
It seems that every cafe gets better and better. Those attending are becoming more engaged and sharing their concerns and offering insights into other people's concerns. We all learn from each other. While learning, we are still able to laugh and have fun.
In August 2013, I planned a Lewy Body Dementia Awareness Event in Thomaston, Georgia. The organization of this event came together quickly. We recapped the planning and the results of the event soon after the event. The North Africa Financial News Network shared the article written by Thomston Times and they had over 1500 views of the article. There were 1000+ people who attended the event. The Thomaston Times and Upson Beacon gave front page coverage. People all across the United States, Canada, Australia and New Zealand gave money. Financially, the event was a success also. We raised $26,000 and after promotional, food, golf cart and other miscellaneous expenses, we netted $16,000 to give to the Lewy Body Dementia Associaton (www.lbda.org). As part of my planning for this event, I began a strategic plan that would enable me to advocate for dementia and hopefully help lead us into a more dementia friendly world.
After the memory cafe, the volunteer, my wife and myself met with the Director of Nurinsg at a local hospice. Our meeting brought much joy to me as we were able to set in place a plan that would enable us to utilize my plans over the past two years. I am one step further into being able to implement new resources that will potentially help persons living with dementia, care partners, businesses and society in general. My desire is that everyone work together to create a dementia friendly world.
Needless to say, I am utterly amazed at all that is occurring and I continue to thank God for all of His provisions.
©2015 Robert Bowles
The pictures above represent feelings and emotions that are controlled by the brain. How can any one have six different brains in one day. Enter my world of dementia. My dementia is of the Lewy body type.
Slow is defined as, "not moving or not able to move quickly. Happy is defined as, "cheerful". Laughing is defined as "act of laughing". Tired is defined as, "exhausted or weary". Sizzled is defined as, " making a hissing sound as in frying fat". Fried is defined as, " cooked by frying". I have found that it is important to me to find compensating measures for each of these types of brain, especially, when all of them occur in the same day which is very common for me. I never know how long each brain type will last.
I wake up in the morning and find myself moving slow due to osteoarthritis and the vascular changes that are occurring in my hands and fingers. This represents my "slow" brain. Soon after awakening, I prepare a cup of coffee for my wife, orange juice for myself and a light breakfast. This propels into my "happy" brain for the day. My RPM's are increasing by now, and I move into my "laughing" brain. Sometimes, this can be quite funny. My wife has told me that my personality is changing from minute-to-minute, day-to-day etc. Often when the "laughing" brain shows up, I breakout into giggling. I have never done this before, so my wife, tells me that she wants to video it, one day for future viewing. Maybe that will give someone a laugh, if she chooses to do that.
I move into my office about 9:00 AM most mornings to start my advocacy job. I cannot take too much time off from work because, I might lose my job. If I am not careful, I will move into my "TBS" brain (tired brain syndrome). I never have been one to back-off when I got tired, so I keep forging ahead. Next thing I know, I have moved into my "SBS" brain (sizzled brain syndrome). I never have been the brightest block in town so I do what I have always done, forge ahead relentlessly. At this point, I have a major problem. I have now entered the world of "FBS" brain (fried brain syndrome). YEP, that means FRIED! I can no longer function and my mind and body, shuts down.
Enter my compensatory measures. The work still needs to be done; but, I have learned to slow down, smell the roses, enjoy the ride and get some rest sooner rather than later. All in all, life is good, and I try to live it to the fullest.
©2015 Robert Bowles
Robert Bowles, Jr.