2020 UPDATE: Just trying to think about how or what to say in this update brings me tears. It's been a long 4+ years of being a caregiver and not a daughter. I wasn't able to call her Mom as she had no clue who I was talking to, she only understood that she was JOY, I wish I knew what Joy was thinking day to day as she laid in her hospital bed unable to move, talk, feed herself or do anything other than smile and blink her eyes. On a good day we might hear a cough or sneeze but other than that, you would never know she existed. We were the lucky caregiver's. Joy was always so sweet and tried her absolute best to stay involved the only way she could, by laughing or smiling. Those were the two things Alzheimer's didn't take away from her. Today, our world is so different than just a week ago, Joy is gone. I can call her Mom now! I pray she is walking, talking and doing all the things she couldn't do for so many years. I pray no other family has to go thru a Dementia journey like ours. This disease runs in our family. Mom, Dad, Grandma E, and others have all passed away. I am really praying a cure comes before it happens to me.
2019 : Quite honestly, I didn't think Mom would be here for another year, yet she is still with us and her quality of life has diminished even more. We used to get a few words every so often but now we are down to one word and that's on a very good day. Mom is so thin and sleeps most of the time. She has been in the hospital bed since Feb. 2017. I am so thankful to our amazing and loving caregiver, Lisa who takes care of Mom during the day. Also very thankful to my husband and daughter for pitching in so I can get away. I don't really know what Mom thinks or feels but my hopes are that she feels peaceful, safe and loved. We will remain by her side until she leaves us. Have I mentioned how much I hate this disease! IT'S HORRIBLE!!!
I never thought we would have to deal with a horrible disease like Alzheimer's in my family but not only did it hit us once, it hit us twice- We lost Dad in 10/2015 to Lewy Body Dementia and Mom is currently in the late stages. Mom is completely dependent on others to provide for the simple pleasures in life. The longest goodbye doesn't even begin to describe what it's like to live with a person affected by this horrible, unforgiving disease. This disease has taken every little thing about my mother away, except her laughter and her smile. Her name says it all, JOY !!!!!
We need to find a cure so that no other family has to experience what we have. Alzheimer's doesn't only take from the patient but it also rips holes in those closest to the patients.
Please consider donating to my team so that we can do our best to try and make a difference for those who haven't been affected yet. I wouldn't want ANYONE to ever experience their loved one's last days on earth in a world filled with the unknown.
I know Mom (Joy) can't thank you personally, but she would be truly honored to know that because of her journey, someone else may not have to suffer.
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