(Alzheimer's Women's Auxiliary for Research and Education)
6th Annual Memories Lost & Found Luncheon
Thursday, November 3, 2005
Belmar Events Center
Lakewood, Colorado

Photo courtesy of Blacktie Colorado
Special thanks to Kate Mulgrew for sharing this:
Keynote Speech delivered by Kate Mulgrew

A lot of things happen when you turn fifty. Your husband has a heart attack, your father dies and your mother, after a long pause, turns to you and says, "I like you, you're funny, but I don't know who you are." Fifty, they say, is a time for the getting of wisdom but in my experience it is a time defined by hot flashes and flashbacks. Curiously, these two conditions are perfectly compatible. The hot flash wakes you up at 3 am, and forces you into a tepid shower, a minimal exercise which nonetheless seems to stimulate the imagination. In my case, it is time travel. My mind breaks loose and carries me back in time via a series of startlingly vivid flashbacks, all of which feature my mother. 

Flashback #1: my mother has just come home from the hospital, where she has had her eighth child, followed by a hysterectomy. She is in high spirits as she takes a bottle out of her bag and places it on the mantelpiece. She turns to us and says with pride, "These are my ovaries." She has affixed a label to the bottle and it reads: From Whence You Sprang. 

Flashback #2: I am leaving home to become an actress. My mother and I are sitting in the kitchen, having a cup of coffee. She says, "Just walk out there and plant your feet on that stage and say to yourself, 'This is where I belong - this is where I have always belonged.' And stop eating. You can't play Camille as if she were the captain of a hockey team." 

Flashback #3: We are at The Excelsior Hotel in Florence and I have just been proposed to by a dashing Italian designer of exciting, if dubious, pedigree. I find my mother in her room, in the dark, lost in thought. She is sad and very still and says quietly, "It goes quickly, you know, youth and beauty. It is a wonderful thing to have and a terrible thing to lose and it is both wonderful and terrible to pass the baton to your own daughter. Thank God for Spinoza." 

Flashback #4: 1 am married and have had two children in quick succession, both boys. My mother and I are sitting in the front yard, watching them play. They appear to be smashing each other with large sticks and Mother says, "They're sort-of cute when they're babies but I think all boys between the ages of 15 and 25 should be incarcerated. After that, they're divine." 

Flashback #5: Every opening night of every play I've ever done. On the opening night of "Hedda Gabler" I am standing in the wings, waiting to go on, trying not to throw up, when I hear my mother's voice coming from the orchestra, front and center. She is talking to a stranger. "My daughter is playing Hedda and they tell me it's a love letter to Ibsen." 

Flashback #6: I am divorced and have taken my two young sons to Ireland for the summer. Mother calls and says I must meet her great friend, Tim Hagan, who will be in Ireland visiting the Ambassador at the same time. I plead with her not to set me up with some over-eager Midwestern politician and she assures me I will never go for him. Reluctantly, I agree to meet him in the lobby of The TraLee Hotel. When he calls my name, I turn and in that instant I lose my heart. This is the love of my life. 

Flashback #7: My mother and I are sailing up The Aegean Sea on a beautiful boat which my mother has christened 'The Floating Prison'. We are dining at the Captain's table when, very suddenly, Mother excuses herself and runs from the room. I follow on her heels and watch, in horror and absolute incredulity, as Mother loses complete control of her bladder. Once inside the cabin, I help her remove her skirt and ask her what is wrong. She looks at me blankly and says, "Oh, nothing honey, I'm fine." 

Flashback #8: Mother has fallen out of her bed, broken her glasses, and gashed her forehead. She claims to have had a small series of strokes. When the others leave, I probe further and Mother confesses that she has seen spiders coming out of the wallpaper. 

Flashback #9: I take mother to a neurologist. After many tests, she is diagnosed with Alzheimer's Disease. We go for a second and then a third opinion. They concur. She is strangely composed when she asks me to meet her in her room for a 'heart-to-heart'. She is alert, aware and fully cognizant of her intention when she asks me to find the right combination of pills and put them on her bed table. "You see, honey," she says, "I've never had anything but my brain to really love. It's been such a wonderful brain and I don't want to go out without it." 

Flashback #10: We are lying in bed, my mother and I, and I have just finished telling her a story. I am stroking her hair when she looks at me and, after a long pause, says, " I like you, you're funny, but I don't know who you are." 

Alzheimer's is not a disease so much as it is a tragedy. Cancer is a disease, MS is a disease, Lou Gehrig's is a disease. The body systemically falls apart and, in fairly short order, the person dies. Often, one is able to say good-bye. This is not true of Alzheimer's, in which death comes with aching slowness and leaves, in its' wake, utter devastation. When you love a person who has Alzheimer's, and if you love that person truly and deeply, the grief is almost unbearable because there is nowhere to put it. You cannot give it to the caregiver because you must honor and protect their well-being. You cannot give it to your siblings because their journey is just as solitary and personal as yours. And you cannot give it to the spouse because they are, themselves, trying to survive. You can try to give it to your friends, you can have a few drinks and a good cry, but this is almost always an exercise in futility because, in the end, they cannot grasp the bizarre loneliness of this sorrow. You cannot explain the curious mixture of rage and frustration, you are too ashamed to admit to your own selfishness and you are far too good and noble a daughter to whisper to yourself that, perhaps, those pills might have been the best idea. Instead, you get on an airplane that will take you home to see your mother, and as you fly over the beautiful fields and valleys of your childhood, the grief you have held in abeyance suddenly overwhelms you and you cannot stop weeping, you simply cannot stop. And you know it will go on like this for years.

How, then, does one make sense of this disease? If you are lucky, like me, and have a modicum of celebrity, you can lend your name to fundraising efforts or make the occasional well-meaning speech on behalf of science and research. But if you are like the thousands, no - the hundreds of thousands of others who have no recourse to help, no understanding of the disease, and nowhere to turn, it must be living hell. Typically, it is a daughter who takes over the care of her stricken parent or, harder still, a wife who will insist that she can manage the care of her husband. Often, there is little or no surplus money to provide relief and so what began as a personal sacrifice becomes an overwhelming burden. How long will the daughter last before she snaps? How long can the wife be expected to endure her husband's mute belligerence, incontinence, refusal to eat or sleep?

I have just come from my mother, who is in the final stage of this disease. She spends most of her time sleeping or staring vacantly into space. Occasionally, she rallies and will sit at the kitchen table, where she is spoon fed her food. Her hands are like small birds, agitated and constantly moving. Her words are mumbled, incoherent, senseless, and yet they are laced with urgency - so much so that the listener becomes convinced that she is desperately trying to convey a message.

But, of course, there is no message because her brain is filled with plaques and tangles, deadly proteins and misfiring neurons. The very idea of communication is absurd and yet we are so hungry for recognition that we misinterpret the agitation as need, the mumbled words as an expression of love.

I crawl into bed with my mother and decide to spend the entire night with her. I want to observe, firsthand, the tricks and treacheries of this disease, or perhaps I am secretly harboring the hope that in the dead of night I will turn and she will be looking directly into my eyes and she will say, clearly and softly, "I love you." I am the first to fall asleep and am awakened at 4 am by my mother's voice, which is a kind-of frantic humming. She is plucking wildly at the covers and attempts to sit up. This she cannot do without my assistance and yet, when I try to help her, her body has assumed a powerful rigidity and it takes all of my strength to get her into a sitting position. I then immediately understand the source of her distress; she has wet the bed and her pajamas are soaked through with urine. She wants to move but she cannot. I sense, in her helplessness, a deep and awful mortification. It takes me a full two hours to coax her to the bathroom, remove her soiled clothing, sponge-bathe her, replace her diaper and change her pajamas. Then I must change the sheets and find a cool cloth for her forehead, which is suddenly and frighteningly feverish from her exertions. Finally, I get her into bed, unlock her knees, push her to the center so she won't fall out and sit there, stroking her hair, until her eyes close. My touch seems to comfort her and she drifts into a profound sleep. When I leave the room, her hands are clasped prayer-like across her chest and her face is very still and very white. "Buried alive," I think to myself.

Now, it is early morning and I stumble into the kitchen. The caregiver, Lucy, is already there, having spent the first full night in three years with her husband. When she smiles, I fall apart and sink into her arms like a small child. This is a miracle of a woman, to have endured hardship like this for three long years without complaint or resentment. What has nearly defeated me is nothing more than a nightly ritual for her, exercised with infinite patience and grace. She assures me that my mother has taught her how to love, how to be, and she refers to my mother's disposition as one of great courage. "She is such a good woman, Senora, much better than me," she says, and in that moment I am in the presence of the most beautiful creature on Earth. I grasp, with stunning clarity, the magnitude of my good fortune in having found this extraordinary person.

I think to myself, but what of others, who are less fortunate? What of their frustration, exhaustion, despair? And I have not even touched on the insidious nature of this disease and how it weaves itself like a poisonous ribbon through the family, unraveling what was once whole and plunging each person into isolation. When you come from a big family, as I do, the emotions elicited by this disease run the gamut, daily, from impotent rage to bleak resignation. Tempers run high and childish dreams are dashed. Mother will not be joining us for dinner tonight. We have only each other, now, to fall back on and to forgive.

So, this is my story. I come here today to share it with you because I know that for most of you, it is the same story. Mother, father, sibling, lover, friend. It is the same story of loss and grief, of knowing and not knowing. Some of you are suffering more than others and some of you have come simply to listen and, perhaps, to learn - but all of you are here because you have, in some way, been affected by Alzheimer's Disease. Let me say, then, that this coming together is all we really have. True, there is never enough money for research and we must strive always, and on every level, to keep fundraising efforts a vital part of the solution. But while science perseveres (and it is, at this moment, making great strides) - we must find a way to help one another.

I urge you to find your local chapter and get involved. If you don't have a chapter, build one. Advertise in your local paper, develop support groups, locate a neurologist willing and generous enough to speak to your individual groups about the nature and progress of this disease. Seek solace in one another and do your best to implement practical measures in your respective chapters; find and train caregivers, involve the entire family in discussions that will unify and fortify the family base, start a volunteer 24-hr. hotline, get philanthropic lawyers and local politicians involved by giving them leadership roles and try to educate your community through newsletters and fundraisers. I realize that all of these suggestions are easier said than done but I also realize the growing need for individual chapters to be organized and sponsored. I have visited many of them across the country, of all shapes and sizes, and I can assure you that where there is commitment, there is success. The key is empathy, and with that key the secrets of science will be unlocked, doors will open into bright rooms of fellowship, mothers will prepare a feast for their children and when they sit down at the table, she will look at each of them in turn and say, clearly and softly, "Let us give thanks."

Thank you.

Please do not repost or reproduce.
Kate Mulgrew on Alzheimer's Disease 
Interview with Stephanie Riggs - CBS4 Denver
Photos from AWARE luncheon
National Alzheimer's Association