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
Robert Bowles, Jr.