Remarks of Karen Rivera
Alzheimer Advocate
St. Peter’s, Missouri

Presented to Senators Mikulski and Bond at Press Conference to Reintroduce Ronald Reagan Alzheimer’s Breakthrough Act

March 10, 2005

Good morning Senator Mikulski and Bond. My name is Karen Rivera and I am honored to be here today. I want to especially thank my Senator - Senator Bond - for working so hard on this important bill that will provide critically needed support services to caregivers like myself. Caregiving is undoubtedly the most difficult job I have ever done, but it has also been the most rewarding.

My husband Herbert was diagnosed with Alzheimer’s disease in 1998 at age 57. We sought medical help when I realized that Herbert was having a great deal of difficulty remembering day-to-day things and completing routine tasks around the house. After many visits and a lot of testing we were told that Herb had Alzheimer’s disease. It was a great shock to us. Neither of us had any family history of Alzheimer’s disease and it seemed impossible that he could have this disease, especially when we thought it affected elderly older adults. At that time our two children Marcus and Sarah, were only seven and four years old. How could their father have Alzheimer’s disease?

The doctor told Herb that he would have to quit his job immediately. He had worked for TWA airlines for 33 years. First as a baggage handler and then later cleaning and servicing airplanes. Alzheimer’s was not part of our retirement plans.

Our family went through a lot of changes and periods of adjustments after the diagnosis. Taking care of Herb and two young children was a real challenge. I had been a homemaker for years but now faced many new challenges. We found a great day care program with the help of the Alzheimer’s Association. It gave mea break from care giving and helped Herb.

I managed to keep Herb home for three and a half years but with rapid progression of the disease and his declining abilities to bathe, dress and feed himself, I got to a point where I could not take care of him 24-hours a day. I had to make the painful decision to move him to a nursing home in the St. Louis area where he would be close by and we could visit him often.

I know he will get the care that he needs but it was not an easy decision. He’s at the point now that he doesn’t know the children or me when we visit. Herbert’s illness has been hard on the whole family but is has especially been difficult for the children. It’s very hard to explain Alzheimer’s disease to young children.

When my husband was first diagnosed, our doctor told us about the St. Louis chapter of the Alzheimer’s Association. The Alzheimer’s Association is a wonderful resource for families and I’m so grateful that they were able to help us. I went to all their educational seminars to learn more about the disease, what to expect as the disease progressed and most importantly, how to cope with the many changes in our life. I attended support groups as well and learned that I wasn’t alone. There are many other caregivers in the St. Louis area facing the same challenges.

I’m grateful to be here today to lend my voice in the fight against Alzheimer’s disease and to urge Congress to pass the Ronald Reagan Alzheimer’s Breakthrough Act as soon as possible. This bill will provide the funding necessary to get better treatments for Alzheimer’s and find a way to stop this terrible disease. It will also provide critical support to families affected by Alzheimer’s. No family should have to face Alzheimer’s disease alone.

Thank you for giving me this opportunity to tell my story.