It’s strange how one story can lead to another.
After reading a post here (http://bit.ly/a1G2nz) about CPR and the second chance that my friend, Dena, gave a young girl, my friend, Jeff, emailed to remind me that he was given a similar second chance. His story of nearly dying because he was choking – literally choking – on a hotdog at the Ruth L. Chaffee Elementary School Carnival Night had a happy ending. He’s alive. He’s a successful Manhattan talent agent. He got married to a wonderful woman. He has two adorable children.
The other part of the story, however, does not have a happy ending. It is heartbreaking, in fact. Jeff was rescued by one of the neighborhood moms, who happened to witness the hotdog attack on Jeff’s trachea. Irene, who trained as a nurse and spent part of her professional career practicing that loving trade, knew that Jeff was in trouble and she knew what to do. Without Irene? No Jeff. No Jeff’s wife. No Jeff’s children. And our neighborhood would have been both decimated and devastated by the loss of one of our favorites.
Irene lived life filled with manic energy. She worked more than one job; not because she had to but because she enjoyed doing so. In fact, at one point, she was doing pharmaceutical sales for two companies (without either knowing it!). She raised two great children, and maintained a loving relationship with her husband of now 43 years.
I have heard it said that when a person dies, the light of their candle, while extinguished, can still shine if we tell stories about them, remember them, and hold them in our hearts. If this is true, then in Irene’s case, the fire atop her candles burns bright but the light does not break the darkness. She has been fighting, and I think now fair to say, losing her battle against early-onset Alzheimer’s Disease.
Dementia of any kind is cruel. In the early stages, it has the unique ability to worry the afflicted person by causing them to second-guess their decision-making process. It steals keys and jewelry. It hides phone numbers. It blurs addresses and blocks the correct route home. It’s just plain mean.
As the disease progresses, it consumes short-term memory, preventing people from realizing that they are repeating themselves, that they have not eaten or bathed, or dangerously, that they have not turned off the stove. Scary, right? Well, it’s even more horrifying because it causes fear. It creates an Oliver Stone-like suspicion of others (remember Jessica Tandy accusing Morgan Freeman of stealing from her in “Driving Miss Daisy?”). Worry takes over: Family members cannot be trusted; physicians must be conspiring to take away freedoms; and the world is simply out to get you. Or, so I have been told by patients who are trying to run from the illness.
Perhaps the cruelest part of dementia is the confusion that it showers on loved ones who are forced to watch someone’s mind erode while their body is maintained. It just does not make sense. We can understand – even if our hearts reject the meaning – when disease destroys cells, organs and bodies. It is far more difficult to comprehend how a healthy looking person is fading mentally. Where are they? We want to believe that our loved one is still “in there” somewhere.
From my vantage point, Alzheimer’s Disease is not represented by the proverbial emotional roller coaster. It has no peaks; only valleys. If one must analogize, then Alzheimer’s is like the water flume: you just go down, and your boat fills with the tears of unfilled dreams, heart-broken loved ones, and a life lost to unanswered questions.
According to the Alzheimer’s Association (www.alz.org), more than 5.3 million Americans are living with this progressive and fatal brain disease. My dear friend, Irene, is one of them. The disease is destroying her brain cells, which results in memory loss, cognitive challenges, and as was the case with my Nana, will eventually cause a premature death. Alzheimer’s, which is the most common form of dementia and accounts for approximately 70% of all dementia cases, is the seventh leading cause of death in the United States. Though there is no known way to prevent Alzheimer’s (yet!), a number of studies are investigating the influence of mental fitness, physical fitness, diet and environment. Drugs are helping slow the disease progression, and the evidence seems convincing that early detection – as is true with most diseases – has benefit.
I’m honest enough to know that we will hear a eulogy for Irene before a cure is found. But I also realize that there is a great deal that all of us can be doing. First, encourage Congress to pass the National Alzheimer’s Project Act (S. 3036/H.R. 4689), which would require the government to create a national plan to solve the Alzheimer’s crisis, known more personally as Irene’s crisis. (For help writing a letter visit: www..kintera.org/siteapps/advocacy/ActionItem.aspx?c=mmKXLbP8E&b=6239707.) Second, you can donate money. Money translates into research, advocacy and support. (Visit www.alz.org/join_the_cause_join_the_cause.asp to figure out how to financially help.) Finally, you can walk (or pledge to support someone who is walking) in a Memory Walk, which are held in all 50 states. Want to be part of Irene’s Memory Walk? Join her family on October 24 in New Jersey. Or, let the internet do something remarkable today and make a donation ($5, $10 or more!) to www.memorywalk2010.kintera.org/greaternjchapter/skeyles in honor of Irene’s fight.
Irene saved Jeff’s life. I don’t think that she remembers that anymore. But, if we do something to fight Alzheimer’s, we will prove that we remember. And maybe, just maybe, she’ll know that the light of our many candles are shining on her, creating a path for her to find comfort, hope and love. This disease will inevitably take Irene but it will not take the wonderful memories that we have of her as mom, wife, friend, and even heroine.
Special thanks to Irene’s daughter, Sherry, for letting me tell this story.