My grandmother died of a broken heart. And Alzheimer's.
I choose to remember the woman who lived next door to me my entire childhood, the woman who baked rhubarb pies and sang in a wobbly falsetto as she played hymns on the piano in her sitting room. The woman who read me books over and over and loved opera and always had soft, open arms for her grandchildren. I choose to remember the woman I look so much like, the woman I resemble more with every passing year.
I choose not to remember the disease she became. The empty blue eyes so annoyed with me for interrupting her, for crying at her bedside. The skin flaking off her once-full cheeks and the chapped hands that would never again reach for me. The disease that took so long to kill her I almost forgot who she was.
She didn't know her husband of more than fifty years. She thought he was her boyfriend. She just knew that he came every day to see her after he was forced to put her in a home. The man who cut her toenails and wiped her chin and always, always treated her with respect even when she grew angry and disoriented.
After he was suddenly killed in a car accident, he stopped coming to see her.
She stopped eating. She died a month after he did.
I live in fear any of my other relatives will develop this horrible disease, that I will. I cherish every moment with my parents, knowing it's entirely possible one or both of them could retreat into their minds, into the place of silence and anger that stole my grandmother.
I've been told my whole life that Alzheimer's is technically impossible to diagnose until the autopsy. Then I read in the New York Times that a definitive, 100-percent accurate spinal fluid test has been developed that will reveal if patients with significant memory loss are headed toward Alzheimer's. And I immediately asked myself if I'd want this test done on anyone in my family -- including me -- who began to lose his or her memory.
Absolutely. I would absolutely want to know.
If it were my parents or a relative, I'd want to be forced to say goodbye while they could still hear me, while they still knew me. I'd want to be forced to draw them the pictures, to tell them the stories, to remind them of the wisdom they'd given me, the gift they'd been to me, the love I felt for them. I'd want them to completely understand how much I loved them before they slipped away to that place.
If there were a cure -- anything that could be done to relieve the symptoms -- I'd want to aggressively pursue it. I would give any money I had to contribute to avoiding that fate.
And if it were me? I'd want to sit down with my husband and daughter and prepare them for the disease, exactly what was going to happen to me, how I not only would not know who they were, but I might hate them. I might be angry or irritable on a daily basis. I might push them away as though they were total strangers. I might break their hearts to the extent they wished I would die and leave them alone to grieve who I was instead of having to face every day who I'd become, the thing I'd become. I'd want to tell them over and over how much I loved them, make videos and tape recordings of me saying that, over and over, I love you, I love you, I love you. Please remember me like this. Don't listen to me if I ask you who you are. Remember me like this, full and whole and sharp and soft and here.
On the day when I finally looked at them with vacant eyes, I'd want them to stop visiting me. I'd want them to kiss me and hold me and tell me that they loved me, then I'd want them to go home and mourn me and leave me somewhere that my pain would be eased but my life would not be prolonged one minute longer than it had to be. I would want my body to die alone, because my mind would already have left them.
If I am to get Alzheimer's, I want my friends and family to read this post, to hear what I'm saying -- really saying -- that I don't want them to watch me be alive and not recognize them. I wouldn't want them to remember me like that. Just as I don't want to watch my parents or relatives descend. The disease moves slowly, and the new ugly memories encroach upon old happiness like creeping lava devouring everything in sight. I want to know if that is coming, to make peace with it, to pray about it, to say my goodbyes while I'm still alert enough to speak the names of those whom I love.
If anyone in my family were to get this disease, I would maintain my post as we did with my grandma, but only if they wanted me to. I left for college with my grandma knowing who I was and returned to someone who didn't know my name, didn't recognize my face, didn't understand why I could barely meet her gaze.
Contributing Editor Nordette Adams, whose mother had Alzheimer's, wrote eloquently about wanting to know in 2007 on BlogHer. She wrote:
Some folks would say, "How morbid!" But caring for family and preparing your family is one of life's challenges. As we prepare financially for old age, we should also prepare mentally. We must prepare while our minds still comprehend the journey.
About a month ago, I found a children's book in my parent's house and brought it home to read to my daughter. When I opened the book, I heard my grandmother's voice in my mind for the first time in twelve years -- the way she used to sound. I heard her, I felt her arms around me, smelled her perfume. My daughter didn't understand why I was crying, but I thanked God for letting me find this book, for giving me back my own memories that were stolen by her Alzheimer's. I loved my grandparents with an intensity that nearly broke me when they died so close together. And I'm so grateful for that book, to have her back.
I want to know. I want to prepare. I don't want this disease to sideline anyone in my family ever again.
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