Wednesday, June 19, 2024

Love Me Till ... Forever!

Being the primary caregiver for a dementia patient that is being kept at home took a lot of stamina, both physical and emotional.  But it also took a tremendous amount of patience.  And that was something that I was not blessed with.  You need to keep reminding yourself that the person, in the body that you recognize, is not the person that you knew.  Their brain cells have changed their personality.  So when they are being uncooperative, or aggressive  stow that anger, stow the lack of patience.... adapt and accommodate.  

There were two things which empowered me to be the best caregiver that I could be.  And I admit that I was not always the best.  But I always tried.  The most important empowerment was a caregiver support group.  Not just any support group.  This is a very special group.  It began as an all-male support group by the Alzheimer's Society.   By the end of the eight weeks allocated by the Society, this group had taken on a life of it's own.  It had a heartbeat.  It had intelligence.  It had  compassion.  It became a fabric, made up of many threads.  A fabric that provided shelter for those that needed one.  A fabric of strength for those that were lacking.  That group is now approaching three years of life.  A few souls were added over time and even fewer chose to leave.  There is a  wealth of knowledge, fostered by experiences, and enriched by the compassion.  Maybe this group is special because of the specific individuals within it.  But I don't think so.  Each member is a different distance down the path.  Each is willing to be compassionate when needed, yet willing to speak with raw honesty.  The moderation has  been superb.  Leading the  group along  at times, but fading into the background when the topic is self-feeding.  I succeeded because I was able to learn what I needed, even when I didn't know it.

The second thing that empowered me during my almost three years as a caregiver, was this poem.  I tried to read it daily.   I needed to be reminded that the body may be your loved one, but the behavior is not intentional.



  1. Patience is..... difficult for me. I have a different situation as you know though it still requires patience, sometimes more than I have. Great poem. I have a simpler thing I say "He's doing the best he can."

  2. Well said Bruce, I know you can be the voice of our group. Your words reflect our feelings perfectly. Thank you

  3. I KNOW from all our conversations that you were an exemplary caretaker and made Pam's journey as pleasant and peaceful a one as possible. Much love to you on YOUR continued journey.

  4. I’m glad you continue to write. You do a great job of articulating our thoughts and feelings! It’s been a privilege taking this journey with you!
    Bob K