|Candlelight Vigil Speech
WASHINGTON, D.C.....CANDLELIGHT VIGIL
(Traditionally held at the Lincoln Memorial/Reflective Pool)
May 12, 2008
I think back to just a few years ago. I never would have chosen to be standing here. I never would have chosen to talk to you about something so personal…and I certainly never would have chosen to be talking about Alzheimer’s. But that’s the thing. Alzheimer’s chooses you. Whether you’re educated or not, financially secure or not, prepared or unprepared—it chooses you.
We have no control over Alzheimer’s choice, but I think, I believe, that we do have a choice as to how we react to Alzheimer’s.
And so I am standing here. I have chosen to react to this disease.
Growing up, I always thought that Alzheimer’s was something that happened to old uncles, beloved grandparents—people you loved, had empathy for, felt sad about. And so when my grandmother got Alzheimer’s I was sad, and I felt…ok…that’s what happens. And then my father got Alzheimer’s. It caught my attention.…..and then my husband got Alzheimer’s. And I “got it”. I realized that no one is immune.
My father was an incredible man. He was a Lutheran minister, able to give strength to others. And when this disease robbed him of physical strength, when it robbed him of his memory, he couldn’t speak, he couldn’t remember. I think it was then that I made up my mind that that was ok. I would hang onto his memories. I would remember for him.
And so one afternoon I sat with my father. It didn’t matter that I was a stranger. I began to hum, --hum songs---church hymns. I think that something must have been triggered deep inside, because slowly, quietly, he began to hum along with me. He may have been a little off tune, but then again, so was I….as we sat there together, sharing songs from long ago. And I knew that this man of faith—so robbed of all strengths--had for a few moments at least found something still untouched by Alzheimer’s.
We can remember. We can remember for them…
My husband, Patrick, and I completed our journey together last year. And in those years I began to learn that strength is not a given. It is not an entitlement. I think that maybe sometimes strength comes in moments of pain. In those early years, in the early stages, the moment Patrick, my husband, looked at me—fully knowing, fully understanding what lay before him and said, “Honey, we can do this together…we can do this.”
In the beginning, I was able to rely on him and his strength. He was a remarkably strong person. We both knew that would change….and it did. And I knew that I had to become stronger so that I could give him something to rely on. Little by little Alzheimer’s entered our life again. It gained strength. It destroyed again. But I have learned so much about Alzheimer’s. I have learned that it is not necessary to be all strong---that when we reach limits of our strength we can reach out to others and use theirs.
When you care for someone for a long time it really does feel like they are fading away. And after awhile so much had been taken away that I found myself searching for anything to hang on to…to keep him with me.
I think I gave my husband away. I gave him away to medications, to doctors, to homecare aides. I gave him away to all the daily tasks that robbed me of what he was. And our home became proof. Our home became filled with plastic gloves, incontinent pads, ointments, lotions….and it took on the sterile, almost antiseptic smell of a home-made hospital.
And then one morning I realized that I couldn’t even remember what he smelled like. I needed to find him. I went into the bathroom and I remember I shut the door. I shut out the world. I opened the medicine cabinet…and among the prescriptions, toothpaste, and mouthwash, I found it. I held the bottle in my hands and sat at the edge of the bathtub. As I lifted the cap, the smell of his aftershave lotion filled my senses.…and I remembered.
Tonight we are here to remember our loved ones. But if we only do that…then we only have memories. We have to want something more. We have to want to honor their lives with a promise that their lives had meaning, that their pain will not be forgotten, that their lost memory will not be lost…but something that will give us strength.
Alzheimer’s teaches you. It teaches you that it has power. It has the power to change all those plans that someday you were going to do—it has the power to do that….and it does. It has the power to erase memory.
But I have also learned that it has limits as well. It doesn't have the power to erase from my memory the morning my husband may not have remembered my name but he reached out to take my hand. It doesn't have the power to take away my hope that others can hold the hand of their loved one longer than I did. For years, Patrick took care of me…and then it was my turn. I think that’s what commitment is about—that’s the way that works…
Yes, Alzheimer’s has power, but I don’t want to be here in ten years to remember. I don’t want to be here in ten years to say we have done nothing. I want to stand with you and say that Alzheimer’s is powerLESS…
And I have faith that because of our commitment here, Alzheimer’s will never have the power to stop us from reaching the people who can enact change—from convincing those who represent us that they must address this disease
…so that their loved ones…and ours
...will be free to remember.
It’s the right thing to do…it's the right thing to do.