Lou-Ellen Barkan (LEB): Ken, we so appreciate your participation in our Early Stage Memory Disorders Forum and your dedication and interest in our work. How did this all start?

Ken Howard (KH): My father showed signs of the disease throughout the 1980’s. By the 1990’s he was clearly in trouble and one problem was the family’s response. My mother felt overwhelmed. She felt she had to take care of her husband, but she was dealing with a person who was no longer the person she knew. When Dad went to North Shore Hospital in 1990 for prostate cancer, I said it was a blessing in disguise, because while he was there, the nurses would recognize that he didn’t know where he was, although he still walked with a certain carriage and spoke clearly.

Because of the way the system works, it was easier to move him from North Shore Hospital into Grace Plaza, a residential care facility in Great Neck with a floor for Alzheimer’s residents. Slowly he declined over the next five years, until he died on Mother’s Day in 1995.

Then I was called by an acquaintance, Lori Burrows- Grant, who had read my story in an interview. Lori asked if I would join her for an Alzheimer’s event in LA. I said I would be delighted and that was the beginning. This may have been before Dad died or right after in 1996 or 1997.

LEB: Was it easier to move him from North Shore Hospital into a facility because the medical professionals were observant and helped your mother make the decision?

KH: I didn’t mean emotionally or intellectually easier. Just that with all the bureaucracy, it was easier to move him right from the hospital to Grace Plaza. We found out later that we were very fortunate because that move was expedited amazingly well.

LEB: I think that there are two challenges people face as the disease progresses: the hard decision to move someone to a home and the actual move itself.

KH: The real challenge is that people feel that placing a loved one who is not “diseased” is wrong. It was hard on our family; this sense of how could you even think of doing such a thing. Dad was still a strapping, fit man and he could still make a joke. But my mother knew that he would get up at three o’clock in the morning, get dressed and walk down to the train station to go to work – when he hadn’t gone to work in years. Once she called to tell me “He raised his hand to me, he’s never done that before. He’s like another person and he is scaring me.” It was hard for her. It helped to have nurses aroundthe- clock who could see that from moment to moment he might seem alright, but that he was going to decline quickly, which he did.

LEB: When my Dad was ill, the first indication that something was going on was seeing his personality change.

KH: In the beginning, my father was still walking and talking in complete sentences. Once, just before he went into the hospital, we took a walk to chat about things. He was a little repetitive. We were by a park and he went over to smile at some kids – he was great with little kids and animals because he had this big, bearish, sweet manner. This time, I could see how the kids were a little reluctant to come to him. He wasn’t loud and he wasn’t doing anything aberrant, but something was not quite right.

His best friend was a psychiatrist. He did some tests on my father and then wrote a very touching letter saying how disheartening it was for him to see the condition of this man that he really admired, who was far smarter than he. For example, my father was really good and fast with numbers. It was sort of unnerving. He would say that you just have to create a grid in your head and then visualize it. He was one of those guys who automatically remembers where every card in bridge has gone.

LEB: We always ask, “What’s the baseline?” If people are very gifted in mathematics or have really astonishing memories when the disease starts, it may take longer to recognize it.

KH: Physically my father was 6’6” and had a way about how he stood and moved. He didn’t look as disabled as he was. Our family doctor who had known my father for years was also part of the decision to move him. He told my mother, “I don’t care what Aunt so-and-so says, he needs to be taken care of and you are not up to it - nobody would be.” At Grace Plaza, initially, they had to restrain and medicate him because he didn’t want to be there. It was very, very difficult.

LEB: And so hard on your mother. Did it have a long term impact on her health?

KH: It’s hard to say with my mother because she brings new meaning to the word stoic. But I know it broke her heart and she felt obliged to be there every day. That’s when I had to be very firm with her and say, “You really shouldn’t be doing this. You are carrying all this guilt like he should still be at home. You have done the right thing. He is in the next town and you’re allowed to miss a day or two.”

LEB: What would you tell others who are worrying about personality changes in someone they love?

KH: You don’t want to be premature, but there is a time to take action. With my mother it was the same story in a different way. My mother’s pretty sharp, but when I was trying to convince her to move to an assisted living residence, I said, “Mom, you’ve got to be able to walk into this next place.” She knew she was close to needing a walker, but would not give in. She had a cane and loved to go to the supermarket because she could lean on the carts. There is a time to move someone into a home unless you can afford round-the-clock nursing care, which we couldn’t. When I visited my father, he was sitting in a straight back chair, dressed very nicely – staring into the distance, but not troublesome. He had a certain dignity and he held onto it until it was gone.

LEB: How long was he in the home? In New York City, the average length of stay in a nursing home is about two and a half years.

KH: He lasted five – probably because he was physically strong. I think if he had any control he would have said, “Let me go.” He was around longer because his heart just wouldn’t give out. You wished for his heart to give out, so he could give in.

LEB: We are so grateful when people tell their stories. Did you have any concerns telling others that your father had Alzheimer’s disease?

KH: No and I would advise others to get past whatever remnants of shame they may have, because it means nothing. It’s a medical condition. I think that with a disease of the brain, people think it’s madness and there is a shame factor. “Let’s keep it a secret. We don’t want others to know.” Why? It’s really just like a lot of diseases that you can develop.

LEB: One advantage of admitting that you have Alzheimer’s disease, is that you can start planning. Of course, it also helps to have advanced directives. Did your father have advanced directives?

KH: Yes. I’m surprised more people don’t. It’s a smart way of arranging one’s life.

LEB: It makes such a difference to the family when they don’t have to guess what mom or dad would have wanted.

KH: Maybe some families don’t talk, but we sure did. I have no confusion about what either parent would have wanted. We talked about these things too much. At one point, my father said “Cremate me. Don’t put me in the cold, cold ground.” And he made a joke about one of those songs about “the cold, cold ground.” And my mother said, “I think that makes sense, and what would you want done with your ashes?” He said, “Throw them in the garbage, what’s the problem?” He had a sense of black humor.

LEB: That is excellent advice; to think about this in advance and know precisely what the plan is.

KH: Of course, if it was me I’d lie through my teeth because I’m in such a ruthless business. I wouldn’t admit it until I was absolutely sure that I couldn’t manage anymore. I know some guys who say they can’t remember where they left their hats, but they can remember dialogue. When I did my kidney transplant, I went in under my mother’s maiden name and never said a thing until I was healthy. Then I went public because I was in control and people could see me and I thought this isn’t going to hurt my career.

LEB: You make an interesting distinction, because one of the things that makes an Alzheimer’s disease diagnosis so powerful is that this is a progressive disease of the brain. In our society, it’s okay to lose physical health, but not mental function.

KH: With Alzheimer’s disease, people have to understand that it’s not inherited madness.

LEB: And it needs to be identified as a disease. Some doctors think that if you exhibit signs of cognitive loss, you may have a substance abuse problem or be mentally ill. Now we do trainings for emergency room personnel to show them how to distinguish the signs of dementia.

KH: There were times when people thought my father was drunk in public. Due to Alzheimer’s disease, he couldn’t form words as well and he moved a little strangely. A few times, as things got worse, people thought he had been drinking in the morning.

LEB: These conditions are not mutually exclusive. You have to isolate the particular problem and get the diagnosis at the right moment in time. What helps people take the next step is public awareness of the disease. Almost overnight, after President Reagan died, we saw an increase in media attention and recently, the “baby boomer” story has been very helpful. Our job is to make sure people have the facts and that they can incorporate these into their decisions.

KH: There’s something about placing people in a residence and having strangers take care of them that makes family members feel like they are doing the wrong thing.

LEB: Some of this is culturally based. In one community health study, there is no mention of Alzheimer’s disease or dementia. I was told by community leaders that their culture does not have “language” for discussing dementia openly. Families expect to keep mom and dad at home, even though it’s difficult and may not be the best decision for the family — or for mom and dad. We now have a campaign to reach out to NYC’s diverse, cultural communities and break through some of the barriers that get in the way of locating critical resources.

KH: When my mother was embarrassed, my brother was furious, but she was just trying to be honest about her feelings.

LEB: In the absence of reliable information, people may think they did something wrong or didn’t take care of themselves. One caller to our Helpline said, “I ate all my almonds. I played golf every day. I did crossword puzzles. And I’m still sick. What did I do wrong?” And our job is to reassure people that Alzheimer’s disease is a disease and we don’t know what causes it.

KH: It’s the two questions I never forget. The first question is “Why me?” And the second question is “Why not me?”

LEB: Ken is there anything you’d like us to leave our readers with?

KH: Yes. I believe it is a very healthy thing for members of the family to visit the person with Alzheimer’s disease and tell them what is going on. For two reasons. First, we don’t know what the person understands. Second, it is healthy for the person who is sharing. “So and so just had a little baby… we traveled to here and there...”

LEB: I completely agree. About a year before my Dad died, I went to visit. I always got a big smile when I showed up and I used to share family stories – what was happening with my kids and grandchildren. One day out of the blue, he looked at me, smiled and said to his caregiver. “That’s my Lou-Ellen.” I never forgot that moment. I was sure that, somehow, he had heard me all along.

KH: Once, when my father seemed barely capable, my wife said to him, “Ken’s been playing a lot of golf and his scores are really a lot lower. Do you know what he is doing?” And without dropping a beat, Dad said, “Cheating?” It was funny and had his old, dry humor. It was like – whoa he’s back, and then he was gone again.

LEB: Those are very special moments. Ken, thank you so much for taking time to talk with us – and to work with us. Many thanks for joining us at our 2006 “Forget-Me-Not” Gala. It was a very special evening.

Previous | Next