I'm Too Scared to Get Tested for the Alzheimer's Gene

Testing positive for the gene today would devastate me. I hope that later on in life I will feel stronger.
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Publish date:
April 23, 2015
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family, aging, alzheimer's disease, genetic testing

A few weeks ago I visited my grandmother at her nursing home. It was the first time she didn't recognize me. During past visits she may have taken a moment and needed reminders throughout our time together, but eventually her face would light up with excitement and she would say my name. This visit was the first time that even with some coaxing she couldn't put a shred of memory to my face. It devastated me.

By the time her Alzheimer's had advanced to a point that she could no longer live at home, I had somewhat settled into a place where I knew what to expect, knew how to make her laugh and laugh with her, knew who this new woman was before me, and what was the same and what was changed. The initial shock had faded and I still had my grandma, she was just different.

Now, though, she was entering a new phase and I wasn't prepared. She struggled more than ever to connect with our conversations and at moments seemed indifferent to my presence.

Shortly after that visit my mother announced that she would be getting tested for the gene mutation related to familial Alzheimer's. She was adamant that she wanted to know whether or not the debilitating and deadly disease would be her future. Until then I thought I had inherited all of my fears and anxieties from her, but apparently the fear of knowing was all my own.

I looked into testing. While APOE genotyping is generally used to establish the likelihood that a symptomatic patient is indeed suffering from late-onset Alzheimer's, people with a family history may also be tested for the gene associated with the disease. A single copy of the gene increases your risk, and two copies (one from each parent), further increases that risk. If the test does not detect any presence of the gene, you are at lower risk, but may still develop Alzheimer's.

There is no test that can tell you definitively if you will develop Alzheimer's. Some doctors argue that being tested as a young adult could generate mental anguish and reduce the quality of life for an individual who could live more fully before the disease takes hold, or who may never actually develop Alzheimer's at all.

Even though my grandmother seems exceptionally young for such an advanced case--she was diagnosed at 66 and is now 72--her disease qualifies as late-onset. I am a candidate for APOE genotyping. The availability of testing forced me to confront what I ultimately feared about the disease.

I fear what the people who love me will endure. I fear that fulfilling my desire to have children would be horribly selfish. How can I pass down the suffering of losing a parent to Alzheimer's? How can I bring children into the world, knowing they may have to face all of the questions and fears that I do now? As I discussed this piece with my boyfriend I realized that taking the test would mean he would have a new set of choices, too. Could I expect a partner to commit himself to me, knowing that I may be at risk? Is resisting that piece of knowledge even more unfair to that person? If I am lucky enough to grow old with someone, I may wake up one day forgetting what our morning plans were, forgetting the name of our favorite restaurant, and eventually, forgetting his name, his face. I don't know that I could ask someone to sign up for that fate.

My mother is likely ready to know her risk because she has already passed some of the choices that lay ahead for someone younger. Could I go on to have kids if I discover that I am high risk? I don't know. But my mother--she already has me. She is planning for the very next stage of her life. I have many more stages in between.

I have chosen to put off testing until the potential for marriage and children are more real--until one day I am actually standing at the crossroads that are only distant outlines to me now. Testing positive for the gene today would devastate me. I hope that later on in life I will feel stronger. Maybe the arc of my grandmother's story will have taught me something that will set me in one direction or the other--another lesson on top of the many she's given me in my lifetime.

When I was leaving the nursing home that day, after my most solemn and subdued visit yet, I pushed down the urge to cry. I was grateful for her blissful unawareness of how much I hurt for her, and for myself. I wrapped my arms around her and whispered, "I love you." "I love you more," she responded with her trademark phrase, the one she reserved only for me. I pulled back and looked into her eyes and repeated myself. "I love you more," she said again, her eyes dancing and playful, a wide smile on her face. She looked happy. I left feeling slightly less depressed. A piece of her knew it was me and we had connected.

The thread that runs between who my grandmother was and who she is today may be thin, but it is still there. I am beginning to see that even amid the change and suffering that may await me and my loved ones a long way down the road, there is still so much to be said for the life you live in between and the glimmers of love exchanged in our most hopeless moments. Already, she shows me the way.