Reflections with Joe Girardi  

Lou-Ellen Barkan interviews Joe Girardi

LOU-ELLEN BARKAN (LEB): Joe, how did you first become interested in our work?

Joe Girardi (JG): My father has had Alzheimer’s for about 15 years. My wife’s grandmother, Lena, had dementia, but she only suffered for a couple of years. My father’s Alzheimer’s has lasted for 15 or 16 years. The progression was slow and he was able to do a lot for a long time because we caught it early and he was properly taken care of. He was able to enjoy life until the last three or four years and since then, it’s become really difficult.

When I was in college, my father asked me when I was getting married. I started dating my wife, Kim, in my senior year, and after two weeks, Dad decided we should get married because he wanted grandkids. Now, my oldest is nine, but Dad only got to enjoy her for about a year or two.

LEB: Were there resources in the community that helped you?

JG: There were two things that helped us. Two of my brothers are doctors and my oldest brother, John, specializes in geriatric care. They recognized the early signs. Other family members thought it was just Dad being Dad. When he was in his forties, Dad used to call us by the wrong names. There were so many of us and all our names started with “J.” It’s no wonder he got confused.

About 10 or 15 years after my mother passed away, my father met a wonderful woman, Judy Shea, who became his caregiver. She loved him dearly and really helped us. To this day we call her “Grandma.”

LEB: How did you decide to move your father out of his home?

JG: When Judy went to work, my Dad’s brother or a friend would come over, but if there was any gap in coverage, my father could get into trouble. At some point, he started walking out of the house and couldn’t find his way back. Then we knew that he needed 24-hour care and we decided that it was time to place him in a nursing facility that specialized in Alzheimer’s. They take wonderful care of him.

LEB: Was he resistant when you moved him?

JG: A little. He fooled the doctors, who believed at first that he could manage in an assisted living residence. It took about a week for them to realize that when he got up in the middle of the night, he never found his room again. I think my father understood.

The hardest thing about dealing with Alzheimer’s is that at some point you’re not sure that anything is wrong. Someone tells the same story three or four times and it embarrasses you. You think, “Come on Dad, you know, you already told that story.” Now, I’d give anything to hear him tell a story three or four times.

LEB: How has your Dad’s illness affected your children?

JG: I think my children have been cheated. I remember my time with my grandparents. I didn’t know my mother’s father. Mom was the youngest of 15. Her dad died when she was seven and her mom died when I was three. But I had my father’s parents, and they were great. My grandmother was a wonderful cook. We went over there every Sunday for lunch. Grandpa used to take us mushroom hunting, made houses out of matchsticks and roosters out of corn. My kids haven’t had a chance to do that.

LEB: When did you decide to talk publicly? Was that a hard decision for you and your family?

JG: Initially, because we were somewhat embarrassed. We didn’t want people to think there was something really wrong with my dad because we’re proud of him. But four or five years ago, I realized that I had a platform to help. And I also started thinking about what if it happens to me? Worse, what if it happens to my kids? The important thing is to solve the problem and if I can make a difference, whatever it is, we’re going to do whatever we can.

LEB: When you talk, your voice is so powerful — everyone listens; people interested in investing in research, people interested in investing in services, people who run nursing homes. This is great for our cause.

JG: The most important thing is early recognition because you may be able to slow the disease down while the family prepares for the later stages. And in the early stage of the disease, the family can still get fulfillment in their relationship with their parents. This is so important because eventually there’s not going to be much of a relationship.

LEB: Do you worry about yourself?

JG: Absolutely. When I call my kids the wrong names, I start thinking that I have what my father had. And my kids’ names aren’t that close. In my family, my brothers were John, George, and Jerry.

I worry because I don’t want to be a burden on my kids or have them consider me a burden. I want to be there to help them. For as long as possible, I want to say to my daughter, “You know what, Serena? I’m taking the kids from you today. You and your husband go have a couple of days off.”

LEB: That would be music to anyone’s ears!

JG: It’s so important for people to speak up and reach out. As you say, in less than 50 years, 1 out of every 5 New Yorkers will either have Alzheimer’s or be taking care of someone who does. That’s a lot of people. I say don’t be embarrassed if you’ve been diagnosed with Alzheimer’s or if you have a family member with the disease. We all have to reach out and talk about it. That’s the only way we’ll help everyone understand the importance of finding a cure and helping people.

LEB: When you speak out, you’re also encouraging young scientists to enter the field. Otherwise, they may believe it’s just an old person’s disease without adequate funding. In 2010 we’ll all have a chance to be counted during the 2010 Census. These numbers will drive government funding and structure — and so many other things for the next ten years. We are starting a campaign to ensure that our entire Alzheimer’s community is counted. For example, we have been saying that over 250,000 New York City residents have Alzheimer’s, but we think that is an understated number.

JG: The growth of that number will be a new financial problem for the health care system, which we’re already worried about. This really needs to be addressed.

LEB: One scientist reminded me that we’ve already spent something like $100 million dollars on the Swine Flu, but this is miniscule compared to the impact of the Alzheimer’s “pandemic” today — not to mention what lies ahead.

JG: I feel badly for those who don’t have loving caregivers. This is not an easy disease to deal with, but if we educate people on the importance of caregiving, it will make the job easier.

LEB: You were fortunate to have a wonderful caregiver for your father. We know how important that is, particularly for those who need to retain a paid caregiver. We have extensive 45-hour dementia training programs for home care workers to address exactly this issue. We want a paid caregiver to do all the things that a loving family member would do.

JG: You have to have a real passion in your heart for someone. Very shortly, we’re announcing a new award named after Dad’s caregiver.

LEB: It’s an honor for me to be working at something that has such an important affect on other people’s lives — and it’s a way to honor my own dad. He died in his 80s, but until he was in his 70s, he was such a terrific athlete that you couldn’t beat him at any sport. I was there just before he died. His final recognition of me was in his eyes that day and it was a gift.

JG: My wife’s father died just after she saw him for the last time. He had instructions not to be resuscitated, so the third time he was on the breathing tube, I told her to go before he passed. He waited to see her.

LEB: He wanted to say goodbye. They leave us with such a wonderful, rich legacy for our children and grandchildren.

JG: And the fight to live until it’s your time.

LEB: And to enjoy life. Every morning, when I get up, I say, “Wow, I’m still here — at 64.”

JG: I say that at 44.

LEB: I’d like to teach my grandchildren to think that way now.

Joe, thank you so much for talking with us today. The folks who read our Newsletter will be so grateful to you for helping us destigmatize Alzheimer’s disease and for bringing the discussion further into the public’s mind.

Joe Girardi was named the Yankees’ 32nd manager in club history on October 30, 2007, becoming the 17th manager to have also played for the club. He was named 2006 National League “Manager of the Year” by the Baseball Writers’ Association of America and the Sporting News. He appeared in 39 career postseason games as a player, most among all current American League managers, and played parts of 15 seasons as a catcher in the Major Leagues with the Chicago Cubs (1989-92 and 2000-02), Colorado Rockies (1993-95), New York Yankees (1996-99) and St. Louis Cardinals (2003). Joe was a member of three World Series Championship teams in New York (1996, 1998-99) and played in a total of six postseasons with the Cubs (1989), Rockies (1995) and Yankees (1996-99). He graduated from Northwestern University in 1986 with a bachelor’s degree in industrial engineering. While at Northwestern, he was a three-time Academic All-American and two-time All-Big 10 selection at catcher. He was elected to the College Sports Information Directors Hall of Fame on July 1, 2007, becoming the first former Major Leaguer to be enshrined and has also received the 2007 Distinguished Alumni Award from the Northwestern University Department of Industrial Engineering and Management Sciences. Joe established his own charity, Catch 25, dedicated to providing support to families and individuals challenged with ALS, Alzheimer’s disease, cancer and fertility issues and providing assistance through scholarships, financial aid and charitable donations for children and adults who may not otherwise have financial and emotional support. Joe’s father, Jerry Girardi, suffers from Alzheimer’s disease. He and his wife, Kim, have three children, Serena, Dante and Lena.