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  • Writer's pictureJadene Sloan Ransdell

07 I Will Because I Said I Would

Jadene Sloan Ransdell

Originally published May 8, 2015

Several months ago, I joined a Facebook closed group for caregivers of people with various types of dementia. I did it because I have an aunt with vascular dementia for whom I have Power of Attorney and who I adore like my own mother who passed away in 2002. I have a long-time friend who has Alzheimer’s, and her husband is caring for her (as he fights Lymphoma) and his 97-year-old mother-in-law with dementia of some type...probably vascular. I also have a friend who is caring for her husband with Alzheimer's. And I am the mother of a 40 year old son with Down syndrome who has been showing more and more signs of Alzheimer's.

I have learned a lot from these wonderful people. Sometimes what they are going through is totally foreign to me because I do not provide the daily care for my son. No matter, my heart is with him every day. As a result of seeing the comfort they were getting from having a place to vent, a place to share an occasional funny story and a place to just be with others who live a similar life, I started a similar Facebook group for caregivers dealing with Alzheimer's in sons and daughters with Down syndrome. It is still very small, so I chose to share what the past 18 hours have been for me.

Following, is most of what I wrote to them, "Matt has had so many struggles and challenges. In addition to Down syndrome he has many other diagnoses, some neurological, some mental health...he has been following the path of premature aging common with our guys with Down's. The symptoms of Alzheimer's have come and gone so it has been easy to deal with because there is always this irrational hope that maybe it isn't really happening.

"On Wednesday, I shared Matt's life story with a group of parents and professionals in Tampa who are interested in providing better support to those with this dual diagnosis. (People with DS are at highest risk for Alzheimer's because of the extra 21st chromosome.) I learned that day that Matt had moved from getting confused about dressing, to needing his caregiver to lay his clothes out, one piece on top of the other so he puts them on in the correct order. It is another realization that this disease Is moving forward. Another difference with folks with DS and Alzheimer's is that the Alzheimer's progresses rapidly for our loved ones. For some, the time between onset and death is as quick as a couple of years; for others, maybe 6 or 8 years. I don't know when we count the beginning in Matt because the doctors have given a less than whole-hearted diagnosis... (something like, 'well he has Down syndrome, so it is inevitable.')

"Last night I started having an anxiety attack… it is full blown today and I can't stop crying. Later this month we will finally have an opportunity to take him to Ft Lauderdale for a comprehensive evaluation of all systems, hearing, vision, everything to get a real handle on where he is and where we go from here. I know I am scared of what I will learn.

"He has been such an important part of my life. He has been my teacher and my baby at the same time. He has brought me heart ache, challenges and such intense joy. I am the one who helped him learn to walk; I am the one who helped him learn to form sounds and words; I am the one who taught him how to feed himself; I am the one who changed 9 years of diapers to finally accomplish toilet training. I am the one who fought with doctors and teachers to make a life he deserves. And I am the one who still fights for him to get the appropriate services he needs. I have watched him grow from a small baby, unable to suck, to a beautiful toddler and then a troubled teen. I watched him struggle in the adult world until he found a life that is meaningful to him, volunteering and bringing cheer to sick veterans at the Bay Pines VA center in St. Petersburg. I am the one who fought the system so he could have a home of his own instead of living in a group home...and now he has staff who are part of our family that he loves every bit as much as he loves his birth family...and now I am helpless as I watch it all fade away."

I decided that what I wrote has to be included in this blog. I know it is raw; I know it isn't pretty. But Alzheimer's isn't pretty. I believe God has led me to take this torture and spin it into silk. I will take my pain and use it to help other parents who are facing this deadly disease. I will take my experiences to help professionals understand the pain we feel as we watch our sweet and vulnerable children (who are now grown sons and daughters) lose everything we worked so hard to achieve. I will do this because I believe that this is the purpose God has given me. He has placed the right events in my life to prepare me; He has put the right people on earth and led them to cross my path at the exact time they were supposed to. It is now up to me to fulfill my purpose as I help Matt age with dignity and all the love he deserves, surrounded by all the people who know him and love him as I do. And it is my purpose to take what I learn and give it freely to other parents, and brothers and sisters. I will do this because I can and because "I said I would."

(Thank you, Dr. Tom Buckley, for teaching me that; thank you Tom Buckley, Sr. for showing how it can be done as long as you have heart. Through my heartache I will remember that always!)

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