Lou-Ellen Barkan: Kate, what led to your interest in the Association’s work?

Kate Mulgrew: I’ve been involved since my mother was diagnosed with Alzheimer’s. In my experience with tragedy or grief, you forget the exact date your heart gets broken – and this was profound heartbreak for me. My mother was diagnosed about six years ago and I was the one who took her to the neurologist – kicking and screaming – while the entire family resisted because they decided this was not a woman who was going to have Alzheimer’s. It was simply not going to happen.

Lou-Ellen Barkan: How old was she?

Kate Mulgrew: She was 73, young by today’s standards – and far younger than 73 in spirit.

Lou-Ellen Barkan: What was there about her behavior that made you take notice?

Kate Mulgrew: It’s harder to get to bottom of this when people have lots of eccentricities, some of which were delightful and some just confused us.

Lou-Ellen Barkan: My Dad was forgetful in an eccentric way, so it took us a while to recognize that he had a problem.

Kate Mulgrew: I took her on a trip around the world six years ago. As we were sailing up the Aegean Sea, having dinner at the Captain’s table, she seemed remarkably bored – something she has never been – with a vacancy in her gaze. Suddenly, she stood up without warning and raced from the room. It was one of those stunning moments of “What the hell is going on?” I followed her. She was peeing all the way out of the room.

Lou-Ellen Barkan: How terrible for you – and for her.

KATE MULGREW: Through the dining room and down the endless hall to the cabin. The moment of clarity was when we got into her room and hastened to help her out of her dress. She acted as if nothing had happened. So that is when you first acknowledge that your mother, who is one of the most sophisticated people in your existence, has urinated all over the ship in full view of 400 passengers and now is denying it.

Lou-Ellen Barkan: This was beyond the threshold of what you thought of as “eccentric.”

Kate Mulgrew: There was no clue before that time. It can be that sudden. Don’t automatically think that somebody having sudden incontinence has a bladder infection. That was the first clue. Then she had what she called a series of small strokes. She fell out of bed with her glasses on, gashing her forehead. I climbed into bed with her, as I often did, and we actually had a laugh about it. I said, “I don’t think it was strokes, Mom, but we’ll get to the bottom of it.” And then she pointed to the wallpaper and said, “Oh, look, isn’t that terrible? There are spiders coming out of the wallpaper.” All of this took place within the same year.

Lou-Ellen Barkan: Was the doctor clear about the diagnosis?

Kate Mulgrew: Very clear, very firm, very kind, and very straightforward with my mother, who looked him straight in the eye and asked, “What is it?” And he said, “While we cannot be completely sure until after you die, I’m 98% sure that you have atypical Alzheimer’s.” And he unfolded the great mysteries of this disease to my mother and asked her to return for tests; a neurological exam, a mental quiz, CAT scans and blood work. I think this was the final nail in the coffin for me because we can’t really bear to let go of people we adore and my mother was everything to me. So we went through the physical exams and the mini mental. The questions are as simple as you can get. “Who is the President of the United States?” My mother looked down at her hand as she answered each question. When I looked down, she had crib notes written on her hand. The date, the President. I said, “Mom, you can’t have crib notes. This is test to see if you can remember these things.” She couldn’t draw the face of a clock. She had no clue what day or date it was. So I took her home, and I said to my husband, “Let’s go to the market and I’ll make a nice meal tonight, we’ll have some wine.” I was fine until I got to the potato section and I remember dropping a bag of potatoes. I’m a celebrity in my home town, so people were already looking at me, and I fell on the potatoes and I couldn’t get up.

Lou-Ellen Barkan: We often react in ways we don’t expect. How fast did the disease progress?

Kate Mulgrew: Fast, because now you can distinguish the eccentricities from the neurological damage. For example, she can no longer drive. That was hell. I would really make this a clear message for your readers. Try to pretend that God is in the room when you tell them they can’t drive, because that’s it for them. The car keys are the last thing.

Lou-Ellen Barkan: I couldn’t agree with you more. We deal with this routinely in our support groups, because driving is the last frontier for a lot of people. Taking those keys, which is essential, is very, very hard.

Kate Mulgrew: These are the keys to their autonomy. My advice is find a mediator to support the decision so they know it cannot be disputed. When our doctor said, “It’s not you so much as the people you might harm that we must consider, Mrs. Mulgrew,” she got it. That was hard. When we had to make the decision about her care, I told my family that we’re going to have to get full time help. And this is my second recommendation; after diagnosis, do whatever you can, pay whatever it takes, get the caregiver who will love the afflicted ones in your life.

Lou-Ellen Barkan: You kept your mother at home?

KM: Yes, she’s still at home. Because this is where the story turns into a mystery of love. A woman by the name of Lucy raised my children. And at the end of 20 years, when I was prepared to leave Los Angeles, I said to Lucy, “I don’t know what to say to you. I love and owe you so much.” And she said, “I’ll tell you what I’ll do. I’ll take care of your mother until she dies.” I said, “You can’t do that. You’ve got five children of your own.” And she looked me dead in the eye and she said, “I would not speak English, I would not have my citizenship, I would not have my bank account, and I would not have anything without you. And this I will do until your mother dies.”

Lou-Ellen Barkan: Were you concerned that she had never taken care of anyone with this disease?

Kate Mulgrew: She was a natural. The problem was my father and one of my brothers. A caregiver is by her very nature an unusual, if not extraordinary, person. But my father and my brother are tough Irishmen. I’m one of eight children, and two of us have died. It’s not like we’re unfamiliar with grief. In my family, you get sick, you die, and everybody gets to listen to Frank Sinatra and have a Scotch on the rocks. So you don’t ever let anybody say that this woman, who is the linchpin, the anchor, the heart, is going to go in pain.

Lou-Ellen Barkan: How did your father deal with this as the disease progressed?

Kate Mulgrew: Well, he did what any normal man would do, he died. It took a couple of years, but in the end, out he went; a couple of weeks, from soups to nuts.

Lou-Ellen Barkan: How hard for your family. Were there other resources that helped?

Kate Mulgrew: My siblings, when they’re not being outrageous, are outrageously good. I love them very much. I was in the unfortunate position of being the driver and was resented for a long time. My father really resented me. He forgave me on his deathbed, but that’s the price that the oldest pays. And generally it’s the oldest daughter who pushes forward.

Lou-Ellen Barkan: I am also the oldest child. When my Dad died, my mother, who is ill herself, was left alone in Florida. So I remain a long distance caregiver. Very difficult; the kind of responsibility that we take on because it’s the right thing to do.

Kate Mulgrew: We’re so much more than just oldest daughters, because they’re thrown for a loop when they have us, right? They’re not really ready to have babies. We become their friend as much as we are the oldest daughter.

Lou-Ellen Barkan: And doing the right thing makes us more vulnerable. If you walk away it’s easier to turn off, but when you engage, it’s very hard to do that.

Kate Mulgrew: When you engage, you know that you’re going into a real vacuum of grief. If you’re not prepared for it, you can become very depressed, something I struggle with all the time. I try to understand that I too am going to die, this is part of life.

Lou-Ellen Barkan: Recently someone reminded me that the disease robs you of the opportunity to say good-bye. I have a friend who lost his parents suddenly in a car accident. He felt terrible, but he admits that he is glad he did not have to watch them suffer in any way.

Kate Mulgrew: I can’t tell you how I wish she’d been in a car accident. Anything is preferable to this. And it’s baloney when they say oh, well, but she doesn’t know. They know for a long time, and during that time it’s a vortex of agony.

Lou-Ellen Barkan: How does it work when your mother is in Iowa and you’re in New York? What sort of advice would you give to people who are living so far away from their loved ones?

Kate Mulgrew: Go home as much as you can because the clock’s ticking. If you don’t, you may always regret that you did not look into those eyes as long as possible. Go home and forget about yourself and your business and your money and all your own dreams. Remember that without this person you wouldn’t have this life. You have to go home for the caregiver and for everybody else who’s suffering – and you have to go home for yourself.

Lou-Ellen Barkan: What wonderful advice. Are there other things you want to share?

KM: First, Alzheimer’s will strip you of all reason and eventually you will need to rely on what you have developed spiritually. The more philosophical we are, the more we can unite with our families and be united in that philosophy. The more we’ll be able to love each other through what will prove to be the darkest chapter of our mutual lives. Second, watch for the eccentricities in everybody you love. And don’t be afraid to deal with the things that bother you. Confront them. Stay on top of it rather than wait for the big surprise at the end – which can be a nuclear bomb.

Lou-Ellen Barkan: We’re so appreciative that you are talking with us. In addition to all your good advice, the fact that people are willing to go public is so important to us. Did you have any concerns when you decided to talk about your family?

Kate Mulgrew: No, there’s no shame attached to this. If I can be a voice of any magnitude, it’s my obligation to be that.

Lou-Ellen Barkan: Are there other ways that public figures can heighten public awareness?

Kate Mulgrew: Wherever I do something, theater, film or television, I try to have an Alzheimer’s benefit. And recently, I have started to invite small, eclectic groups of women, no more than 20, 25, to meet the local neurologist of note in this field. The response is always electrifying because things are revealed that are never discussed in celebratory settings. I did this in Pasadena, I did it in Palm Beach, and I’ll continue to do it. I think if everyone did these on a small scale, it could be enormously helpful.

Lou-Ellen Barkan: I agree. We had a similar event this summer on a very hot night. We had such a good speaker and the subject matter was so compelling that we had to actually stop audience questions when it got dark. KM: I think that people are riveted because they are confronted with their own mortality. And it’s a license for them to say “Oh, God, am I going to die of this awful disease? And if so, am I alone?”

Kate Mulgrew: It’s hard to be alone with this in NYC. We represent 5% of the country’s population with Alzheimer’s disease, 200,000 New Yorkers. When the Baby Boomers reach age 85, we project that one out of every five New Yorkers will either have the disease or be taking care of someone who does. We’re talking about the greatest health care crisis the city and the country have ever known.

Kate Mulgrew: And if New York doesn’t have the resources, we’ll be talking about a living hell.

Lou-Ellen Barkan: I give this speech regularly and recently after my 33 year old daughter heard me speak, she said, “My God, Mom, every time you use those numbers my blood runs cold.” The truth is, it’s a terrifying story. But every time I tell it, people say, “Tell me more. Give me those numbers again.”

Kate Mulgrew: I think that’s part of our job. Wherever we go and whatever we do, it should always involve this because it’s crucial to the well-being of everyone we love.

Lou-Ellen Barkan: And crucial for the community. We certainly intend to continue carrying the message, your message. Thank you for talking with us. It’s wonderful to know that you are part of the family.

Kate Mulgrew, a National Advisory Council Member, received an Outer Critics Circle Award Nomination for Outstanding Solo Performance and a Lucille Lortel Award Nomination for Outstanding Lead Actress for her performance in the Off-Broadway production of Tea at Five at the Promenade Theatre. Having made television history by creating the role of Captain Kathryn Janeway on Star Trek: Voyager, the first female commander ever to guide a Star Trek Vessel, Ms. Mulgrew received a 1998 Golden Satellite Award for Best Performance by an actress in a Television Series and a Saturn Award for Best Genre TV actress. Television credits include leading roles in Ryan’s Hope, Mrs. Columbo, Kate Loves a Mystery, Heartbeat, Man of the People, Cheers and a guest appearance on Murphy Brown for which she won the Tracey Humanitarian Award. Ms. Mulgrew has starred in several feature films including Love Spell: Isolt of Ireland (with Richard Burton), A Stranger is Watching, The Manions of America, Throw Mama From the Train and Remo Williams: The Adventure Begins. Ms. Mulgrew made her Broadway debut in the Peter Shaffer play Black Comedy Other stage credits include starring roles in The Royal Family at the Ahmanson Theatre, Titus Andronicus at the NYSF Delacorte, The Film Society by Robert Baitz at LA Theatre Center, What the Butler Saw at La Jolla Playhouse, Hedda Gabler and Measure for Measure at the Mark Taper Forum, Another Part of the Forest, Major Barbara, The Misanthrope at Seattle Repertory Theatre, Our Town at the American Shakespeare Festival. She is the proud wife of Tim Hagan and mother of two sons, Ian and Alexander.

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