Tuesday, May 15, 2018

Linda's Take on Assisted Living

Several viewers of Don’s blog have requested that I describe my take on Don’s move to Assisted Living. I have been mulling around in my head trying to form a response that is truthful and neither sugarcoats, downplays or is overly critical of the situation. 

            Don thought about assisted living a lot before he made his choice to actually move.  We would talk about it listing pros and cons and each time I felt we both were on the same track of remaining in our one-bedroom apartment at Azalea continuing to cope with changes as they occurred.   It was frustrating for me because I felt strongly that Don & I were safe and togetherand that was all that mattered.  My preference is Don and I together, braving whatever comes together.  

            I remember the times when Don was on sea duty, with 6 to 8 months cruises; in one week, out the next; duty days; broken gun mounts that required 24-hour days to fix.  We always found time to be together whenever he was in port.  Sometimes he would call at 2:00am and I would grab up our son, get in the car, pick Don up and have him back at the ship at 5:30am. It was our togetherness, our connection to each other.  We were at the center and everything else came second.   That is how I felt and still feel about us. I want us together in the same apt. us against the world.  But… that is not what is good for Don.

            So now.  At first, I felt abandoned.  It wasn’t our togetherness he needed but solitude.  How could that be?

            Lewy Body Dementia is a hard taskmaster.  It demands more and more of Don (and each person who suffers from it) until it fully consumes.  What Don was telling me and I wasn’t hearing is that he needed a quiet cocooning space to not only reenergize but to hang on to his inner self.  From what I can comprehend with Lewy Body life is different in ways that we who don’t have it can barely understand.  A simple everyday phone call is a jarring strident noise that disrupts the psyche and sets him on edge.  Add to that the tv, the commercials that come on in loud decibels, the dog whining, my voice droning on about things that overwhelm him, residents going down the hallway conversing loudly.  Cacophony, chaos, winding him up like a tight spring - with no way to vent before an overwhelming explosion occurs.  Life with Lewy Body is a quiet hell of inner turmoil… how could I continue to hang on to “you need to be with me” when Don needed a quiet, safe place to detox in solitude, to renew, refresh, bring back as much harmony, serenity, and quietude as is possible.  

            So, I have come to terms with the change.  Because I love Don I accept and feel grateful that there is a place Don has that is his lifeline.  Because Don loves me he is willing to leave his place of peacefulness to brave the turmoil of everyday life to be with me.  We have created our togetherness, different from the Navy times, but still our togetherness that is the center of us.  We are and will always be tuff together!!

            There is still rough road ahead.  Lewy Body is like the flowing lava we see as Kilauea erupts and consumes everything in its path.  I believe Don’s hanging on to his inner self will be harder and harder to do. There is the possibility Don won’t always recognize me. There will be fear, anger, loneliness, sadness, how will we cope with all that possible horror?  
            I have to trust that God knows best and will cocoon Don with His presence and trust that God in His mercy will help me through the future horrors. For now…   I cherish this time together. 


  1. Linda, thank you for putting your feelings and understanding into words. I copied and sent this to my wife. My CCRC sapce is 1.5 hours drive away from my wife who still lives in our home in the NC mountains. She too doesn't understand but seems willing to at least understand whwat I am describing to her. And yes, my wife is just beginning to have some idea of how hard it is for me to have her stay with me Thursday mid-day to Saturday mid-day. It is hard for her and it is hard for me, but I find myself going crazy while she is here, and much less crazy when she is not. But I also can't live without her presence in my life, I need her but I can't live with her for very long before the forces of darkness take over again. Thank you again. Bill

  2. Thank you for your thoughtful words. This will be comforting and helpful to all us who share LBD along with our families

  3. Thank you. I read every post but do not respond...Thank you.