The Power of Community for those with Dementia

by dale on September 19, 2016

bill-and-steve-45-reunionWe have all heard how important socialization is for us as we age.  That is especially true for those with dementia.  But I now believe that we must move beyond socialization to “community.”  My husband (Bill) and I experienced the depth and power of community last week when we traveled back to Annapolis, Maryland to attend his 45th reunion at the US Naval Academy (USNA.)  It was a week that was truly life-changing for both of us, but especially for him as he continues to confront the decline that comes with Lewy Body disease.

Let me take a step back first and describe what our life was like before this life-changing event.

My husband was diagnosed with Lewy Body disease two years ago at the age of 68 at Cleveland Clinic.  For those of you who don’t know, the disease is unpredictable (from day to day) and has a much shorter prognosis than many of the other dementias.  On a daily basis, he struggles with Parkinson’s (a part of the disease), REM sleep disorder, hallucinations and cognitive decline.  He is very aware of the disease and identifies each new loss himself.  He was an engineer and this is how he maintains some control over the disease, by analyzing it.  I have my own ways of coping.  I structure his days, ensuring he has the best balance of physical exercise (PT and our Y), healthy food and that all important hydration,  and something that I feel is so very important, nurturing his friendships and relationships.  We’ll often visit friends, have impromptu dinners, attend his monthly train club meetings and attend his Early Stage monthly events at our local Alzheimer’s & Dementia Services of Northern Indiana.

Everyone tells me we do so much, we are so proactive.  We try to be.  But, as his wife and caregiver, I am always looking for opportunities that will bring him joy. You can have all the structure and care in the world, but without joy, you are missing out on life big time!

And so last April, I received an email from the wife of my husband’s former roommate from USNA, telling me of the 45th class of 1971 reunion.  I decided then and there, that I would do all in my power to take him back to his first reunion since he graduated in 1971.  Between April and the reunion, he declined, of course!  But I carefully planned the best mode and route to travel, got advice from his neurologist, obtained a wheelchair and learned how to lift it in and out of our trunk.  7 days in 4 hotels.  Not only did we successfully navigate the miles (Indiana to Maryland), the heat (oftentimes over 100 degrees) and the change in his environment,  Bill found a deep connection to his past, re-connection with friends with whom he shared and continues to share, an unbelievable bond AND found that often elusive, Joy!

At the reunion, my heart was filled to overflowing with gratitude.  I never had to ask for help.  One of his classmates was always there.  If I had to step away from his wheelchair, I would look back and see classmates on either side and a huge smile on Bill’s face.  We spent every meal and every event with the men and spouses of his company (a smaller unit of the class.)  We shared stories of our children, grandchildren, our world travels.  We shared our hopes and dreams for the future.  We connected in a deeper way than I ever expected.

And, no we will not be waiting until the 50th reunion to gather again.  We all vowed to meet in San Diego in 2018 for a mini-reunion.  My husband is determined we will be there.  His former roommate offered to fly to our home and help me fly Bill there!!!

The day after we returned, Bill’s physical therapist asked him, “What happened to you?  You are doing great with all your exercises.”  I see a man transformed by deep community, given the gift of joy and hope.  We both know his very special “community” will be there for us and we will be there for them.

My advice to those immersed in the world of dementia… find your community, a community that embraces your past and that holds hope for the future.  And never ever pass up the chance to go to a college reunion!

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