MEMORIES ARE A PRECIOUS GIFT! HELP ME FIGHT "EARLY ONSET" ALZHEIMER'S!
This petition had 857 supporters
Early Onset Alzheimer's or Younger Onset Alzheimer's Disease affects over 250,000 American's under the age of 65. While still in need of Health Insurance for themselves and their families, having this diagnosis they not only find themselves sinking in a devastating hole of mental and physical pain but also medical expenses. Let me share my story with you.
My husband and I had both been working and raising our 5 children in our home for 26 years. I was an Emergency Medical Technician at the time and Steve a Shop Rite Manager. In December of 2010 Steve, age 54, was diagnosed with Alzheimer's Disease. I knew well what lay ahead. As quickly as the Memories had left and forgetfulness entered Steve's Brain, he was forced to retire early. Which in turn would mean losing our Health Insurance. This was devastating news to our family. Our two income family now one, could not survive on $16/hour. Desperately trying to though, I worked and cared for Steve. My once very independent, healthy Husband is now finding that he can no longer find things where he put them. Or when he WAS driving, find his way home. I arose early to make Breakfast, lunch and dinner, labeling everything so he could find them and know when to eat. And then went to my long 10 hour shift. I bought him a simple flip phone to contact me which he did EVERY minute because he soon forgot that he had just called. One afternoon he called and said our cat Spike had run away. I was so far away driving my ambulance in south jersey, before I could say, "DON'T go outside"....he hung up! I was a mess all day worrying what could happen! Where would he go? Would he come back? By the time I got home, there he was with a big smile telling me, "I found her! She's home!" I looked and saw our white cat was black and gray from WHO knows what or where she was!! and Steve could not even tell me!! But they were both home safe!
I worked many hours to keep paying the Mortgage, and basic everyday expenses. I could not afford Health Insurance. and the Mortgage was getting behind. The disease was raging on. Steve required more attention. Adult Day Care, which also caters mostly to the older population of Alzheimer's patients, and must be paid out-of-pocket. I found one suitable for Steve. I also had to take him there and pick him up. I could only afford 3 days at $900!!! I can not tell you how alone, tired and afraid of being homeless I felt. I made MANY phone calls only to here, "How old is he? Oh not 65?" *click* Where was the help? Where were the answers to EARLY onset Alzheimer's? I must say, I had a Great support Team behind me, encouraging me along this very dark and scary road. I worked and returned home, but my co-workers, texts some phone calls helped to keep me going.
I was quickly losing the battle. By 2012 Steve would require 24 hour care. I would come home after a long shift and Steve would stay up all night wandering around the house yelling, crying, going in the attic getting into things that might hurt him. He had no concept of his personal needs or safety. As I called the Nursing Homes they too asked if he was 65 and *click* After a long process and by accident, I had to bring Steve to the hospital for a small problem. When they saw he was "slightly confused" they asked if I worked and who would be home with him. This is where my help began. Eventually Steve got on Medicaid/Medicare and THEN he was able to get into a Nursing Home. I had saved and set aside money for Nursing School. So I enrolled for a one year LPN Program and am now working in the facility where Steve is! My research on Early Onset Alzheimer's has proven to me that MUCH more MUST be done! Steve entered a facility with an older population of Alzheimer's Patient's in their 70's, 80's and 90's wondering what he was doing there.
VERY FEW facilities accept patients with Early onset Alzheimer's unless they pay Out-of-pocket $10,000/month. With the cost of caring for a loved one, families are forced to choose between food, medicine and even as myself, my Mortgage over these expenses. Whether bringing help into your home or having your loved one enter a facility we must raise funding for Early Onset Alzheimer's.
Steve may not remember who I am now just 6 years from diagnosis, but I want Congress to remember who HE is and all of the other's who suffer this cruel and awful disease! Please sign so you can stand with me to fight Early Onset Alzheimer's.
Today: Marcia is counting on you
Marcia Valese needs your help with “President of the United States: MEMORIES ARE A PRECIOUS GIFT! HELP ME FIGHT "EARLY ONSET" ALZHEIMER'S!”. Join Marcia and 856 supporters today.