LIVE LIFE TO THE FULLEST
LIKE NEVER BEFORE
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 (( https://www.dementiamentors.org/ )) 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. (( https://truthfulkindness.com/index-persons-with-dementia-pwd/robert-bowles-jr/pwd-commun-w-dr/ )) 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 ((https://truthfulkindness.com/index-persons-with-dementia-pwd/robert-bowles-jr/visit-facility/)). 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
©2015 Robert Bowles
((Originally posted 2015 February 28 at lbdlivingbeyonddiagnosis))
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