Dementia Dignified, LLC

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Making the most out of a devistating situation!

Posted on December 3, 2015 at 8:50 AM Comments comments (1)

Since this is my very first Blog, I decided to let you know how this whole process began.  What an amazing learning experience this journey has been!

  In the spring of 2009 my mom was diagnosed with Frontotemporal Dementia at the early age of 56, after a very scary visit to the emergency room with questionable stroke like symptoms, and a long work up by a top neurologist.  Quickly, our world would be turned uside down. I had just decided to move with my new husband of 4 years from Pennsylvania to Florida.  I had been an RN for 5 years and was just starting to think about possibily starting a family.  This wasn't supposed to be happening to me!  As a nurse, I had difficulties taking care of patients with dementia.  I would dread it because I knew my shift would be a difficult one, usually filled with behaviors that were very hard to manage, then throwing off my whole routine.  Now, my mom had dementia!  I knew what was going to lie ahead from the nurses perspective, but had no idea how things would affect our family.  The move to Florida lasted only 8 weeks for many reasons, but the biggest one being that I knew my mom needed me closer to help her navigate her new diagnosis.

My mom was still working, living alone, driving and functioning fairly well at that point, but that all changed very quickly.  I lived about 1 hour away and went to visit her often.  We talked every day and soon began to notice some things that were alarming.  It was then that I began my quest for as much information and support as I could find.  She had a pretty good support system of friends who would check on her and help her out with mail and house hold chores.  I had to take care of her medications by filling a planner up weekly and calling her to remind her they were due daily.  Eventually, she couldn't follow my directions on the phone any longer.  Her license was taken away from her and car was sold.  She had meals on wheels  coming daily and she became suspicious of who was at the door and would not let them in.  Her hygine began to fail as I would find her in the same clothes for days at a time. I needed to handle all of her finances and make sure her legal decisions were planned for the future. I was concerned for her safety at home at this point so began looking into placement options and was very lucky to have that process occur quickly. 

She has now been institutionalized for 2.5 years in two different facilities.  She is in the 6th of 7 stages of Alzheimer's disease, and is no longer able to communicate with words as we know them, but she certainly makes her frustrations known.  Her personality has changed from the happy, smiling, funny, talented mom I remember, to someone who seems trapped inside a scary world of unrest and the unknown.  I'm not sure she knows who I am anymore, but some days, she will acknowledge me with a hint of remembering.   I can't get her to sit with me and just be, as she paces around her locked unit from morning until night. 

In the middle of all of this devistation, prayer has been my source of peace and strength.  I feel that maybe, just maybe, all of this hurt and upset was placed upon our family so I could potentially learn, help, and touch the lives of many, many others going throught the same thing.  I believe that things are falling into place with the creation of Dementia Dignified, LLC because this is what I was meant to be doing.  I am trying to take a hopeless, devistating situation and turn it into a way of honoring my mother by making sure that she, and others like her with this disease, will be treated with the dignity, honor, and respect that they deserve.  I have seen such a need for education, support and advocacy in the last 8 years.  I'm not claiming to be a dementia expert by any means, but I feel that I am being called to try to make a difference for as many people as I can who have been, are, and will be affected by this horrible disease. 

Kelly Stephenson, President of Dementia Dignified, LLC