This was written and shared 2018Apr15 by Robert Bowles on his (now unavailable) website. Shared here with permission. A few font and format changes added by Truthful Kindness to make the phrases easier to process for persons living with dementia, and to facilitate later finding quotes. Topics: communications, mood, relationship, strategy, symptoms, talk :
Living with any type dementia can be challenging, frustrating, and sometimes we show behavior expressions that we wished you had never seen. Lewy body dementia (LBD) brings challenges even in the early stages.
I’ve been living with LBD for the past 5 years and 10 months. Statistics indicate the average life expectancy is 2 to 7 years.
When you live with any type dementia, you become THE EXPERT.
Loved ones and friends will only know what Persons Living with Dementia allows them to know.
The question becomes,
“What are my feelings as I approach the beginning of my year 7th year? Humor is good for the soul and it can lead us to laughing. Several months ago, I was talking with my Neurologist and I brought up the fact that some people live less than 2 years with LBD, average is 5 to 7, and occasionally some might reach 20 years. Several months ago, I suggested to my him that he make a note in his computer, “Robert Bowles says he will beat 20 years”. Through my lens, I’m not bound by the statistical data of years. I know that I will have a better quality of life and overall well-being by being active, social, and helping others.
Living with Dementia does not come without adversity.
It comes down to how we will manage the adversity.
Through my deep and darkest times,
I learn so much that I can use to help others affected by dementia.
I would suggest that life is made up of attitude and perspective.
How do we see what’s before us?
I wished I had not received my diagnosis of dementia; however, I’ve come to understand that I received a gift. I needed to learn to live with the condition I had been given. You’re probably thinking this man is crazy. I would too if I had not seen this through lens I did. No longer would I be working 60 to 70 hours a week in my pharmacy, but I could turn the lemon into lemonade. This mindset led me to dementia advocacy. This gave me new life filled with purpose, so I must forge ahead.
Let me share with you one example and how my attitude and perspective helped me move forward.
Yesterday was a very stressful and challenging day. Toward the end of a phone conversation with someone, my energy hit rock bottom and my emotional state crashed. I began crying and screaming which catapulted me into a state of not knowing what to do next.
This lasted about 15 minutes. Exhausted, I began to think about what just happened. I had I never experienced anything of this magnitude. The tone and enunciation that I experienced coming from the person I was speaking with might not have bothered someone who isn’t living with dementia. But these few words sent me to the point of no return.
What’s different? I’m living with LBD and they are not. As I previously mentioned, there are situations and feelings in the lives of a PLwD that you may never know.
My Mom and Dad both died from dementia. Rarely are families given resources or a path forward after the diagnosis. Nothing during my parent’s journey prepared me or my sister for what we needed to do. My sister and I made many mistakes in caring for our parents. Nothing I experienced in caring for them prepared me for my diagnosis. Because of our path in caring for Mom and Dad, I told my family that I would be an advocate and that I would share the good, bad, and ugly with the hopes that others experience a better path forward.
There is no place for condemnation of the person that led to “The Day I Lost It”. Families are doing the very best they can. Physicians instruct us on the diet we need. When medications are given, they tell us what it’s for. If we are diagnosed with cancer, we are given guidance and empathy. If we are diagnosed with dementia we are most always given nothing. All too often a person is started on a medication for dementia, but the physician never tells them or their family that dementia is the reason. All the PLwD ((*)) wants is for the physician to tell them why they are giving the medication and provide empathy.
Living with dementia does not define who we are. With early diagnosis, there is so much life to be lived. At the time of diagnosis, it becomes incumbent upon each of us to ACCEPT the diagnosis unconditionally both in our head and heart. This will set the foundation for our path forward. Three other things that I would suggest are SOCIALIZATION, ATTITUDE, and PURPOSE. I labeled all four of these ASAP. What path will you take if or when you are diagnosed? What path will you take if you are a family member?
“I was brought out of the valley of darkness ” and given the gift of living”
© Robert Bowles on 15Apr2018.
*PLwD = Person Living with Dementia
Robert’s website LBD Living Beyond Diagnosis is now closed, but this entry is still available at Linked In >> https://www.linkedin.com/pulse/living-dementia-day-i-lost-robert-bowles/ ;
ASAP at https://truthfulkindness.com/index-persons-with-dementia-pwd/robert-bowles-jr/asap/ ;
Index for articles from Robert Bowles on my webSpace is an ongoing project at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/robert-bowles-jr/ .
* Admin issues:
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Tags: alzheimers, communications, dementia, dlb, lbd, lewy body, living beyond diagnosis, mood, Robert Bowles, relationship, strategy, symptoms, talk . S&S categ: communication, mood, relationship .