June is Alzheimer’s and Brain Awareness month. This means I will take the purple pledge and spread the facts and figures of this terrible disease. There are staggering statistics about the increase in diagnoses and yet no increase in funding. It is the only cause of death in the top ten that cannot be prevented, cured, or slowed. Almost two thirds of those with the disease are women. These are the bullet points, but this is not the story. This story is about me coming to terms with what still remains of my mother.
Back in February, during Oscar season, I decided to be brave and watch Still Alice. The movie is about a woman who is diagnosed with early onset Alzheimer’s, the same form my mother has. I love Julianne Moore and I knew she was the front runner for Best Actress, so I really wanted to see her performance, even though I knew it might be emotional torture. I sat curled in a tight ball in the corner of the couch with a tissue box next to me, still unsure if I was ready for my husband to hit play. I said OK, let’s do this.
I can’t review the movie. To be honest, I can’t remember some of it, and yet I know all of it, personally. Every beat. I felt like I was falling down a well as I watched. There were times I became aware that I was holding my breathe, other times tears were just running down my face and neck, and when the credits finally rolled my whole body cracked in half and I sobbed for about twenty minutes. A friend saw it as well, and through tears she told me it helped her understand a little of what I go through. I realized then that I don’t talk about it much. I don’t want to burden anyone, and there’s a stigma, a feeling of embarrassment associated with the disease. In the film, Julianne’s Alice admits she wished she had cancer because then people would rally for her and call her brave. I get that completely. People know how to deal with cancer because they understand what is happening. People react with fear and confusion when they come in contact with someone with Alzheimer’s because they think they’re crazy or impaired, because they don’t understand what is happening. It’s also difficult for the caregivers and loved ones to express what they’re going through because of a weird sense of shame. It brought to mind a scene from Harry Potter and the Order of the Phoenix (stick with me on this). At one point Harry yells at Hermione, “You don’t understand!” She responds with, “Then help us to.” So here we go.
I gave up on religion a long time ago, but I still clung desperately to some kind of spirituality. I wanted to believe in souls, that those souls go on to someplace nice, that there is something bigger than us out in the universe, something that gives us divine purpose. When my brother died, my family found comfort at church, but that didn’t really work for me. Still, I wanted to believe that he “was in a better place” and maybe we’d see each other again. Watching my mother disappear inside herself has brought me to a new realization. If there is a god and if we have souls, then one of two things must be true. One, that my mother’s soul is still in her body, trapped and aware as her brain rots and her body shuts down, or two, that her soul has been relieved of this torture and what’s left is the empty husk of my mother. Both of those options are terrifying. Instead, I’m now at peace with the idea that we are a collection of cells, that those cells break down, and there doesn’t have to be any deeper meaning to any of it. With that in mind, while what is happening to her is awful, it’s not quite so horrifying. Her brain is different now, I wish it weren’t, but that’s the way it is, and she is still my mother.
Many of you know that I don’t plan on having children. Some people have asked me if this experience brought me to that decision. The truth is no, it hasn’t, but it has certainly reinforced it. I’ve known since about the age of 15 that motherhood was not my calling. I have many reasons for this, but now is not the time to go into them. What I will go into is that being childfree has actually been the one easy aspect of this ordeal. Early onset Alzheimer’s is genetic. I have a 50/50 chance of developing the disease, and that’s only because I’ve been too scared to get tested. If I get tested, and carry the marker, I will develop the disease with 100% certainty. My parents clearly did not know what the future held for them. My maternal grandmother also has Alzheimer’s, but she didn’t develop it until her seventies and they didn’t know it was genetic. If they had known my mother would be diagnosed at 56 and be completely dependent on others by 62, maybe they wouldn’t have had children either. Could you blame them? If I have the marker, every child I had would also have a 50/50 chance of suffering the same fate, and they would be taking care of me possibly as early as their teens. I would never, ever knowingly condemn a child to that. It would be irresponsible and incredibly selfish. So I’m thankful that motherhood isn’t something I want, but have to give up.
That doesn’t mean that I don’t have my share of temper tantrums, sleepless nights, picky eating, and diaper blowouts. Except in my case, the person is bigger than me so she’s a bit harder to wrangle than a child. I have described caring for her as being similar to caring for a non verbal, autistic two year old. I’ve listened to mothers sit around sharing “hilarious” stories of diaper changes gone awry, or ridiculous reasons their child is crying, or their kid refusing to eat dinner but they’ll eat sand. These are usually shared with a good laugh over a glass of wine. Well, guess what? I have these stories too, but you don’t want me to chime in. It would ruin the evening. When people in my situation share diaper stories, it’s not girls night out, it’s a support group for caregivers. There’s an assumption that because I don’t have children, I don’t have responsibilities. No one close to me is guilty of this, thank god, but people have uttered the words “you’re not a mom, you wouldn’t understand.” Say that again and you’ll understand my fist in your face.
Speaking of caregivers, we have a miracle of a woman who works for us. She can get my mother to go for walks, to eat, to laugh. These days, my mother gets out more than I do, and good for her. Sometimes I feel incredibly guilty that I can’t give her all she needs, but the truth of it is, I’m too close. Sometimes I look at her, and I can’t accept that this person who looks like my mother isn’t behaving like her. She’s got to be in there somewhere right? Why can’t she just come back? But that’s not reality, we have a new reality, and the woman who works for us is trained to make everyday the best it can be for the person my mother is now. She’s not burdened with the sorrow of knowing who she used to be.
I know who she used to be. She was the light of my life, my biggest fan, my best friend. She is still here, and yet she is gone. I am trapped in a permanent limbo as she continues to slowly decline. In a single day I can cycle through anger, fear, utter despair, guilt, the comfort of memories, happiness that she’s still alive, and the horrible thought that maybe it would be better if she weren’t. I feel sick every time I think it, but she’ll never get better, and my father and I can’t move beyond our constant grief. I read a great article earlier this year, Finding Joy in My Father’s Death, and one paragraph struck me:
“What if you’ve thrown a dinner party,” I said. “And at 11 o’clock your guests got up to leave. The dishes were still on the table, the pans were in the sink, you had to go to work in the morning, but the guests just kept standing in the open door saying good night. They tell you another story, praise your cooking, go back to look for their gloves. They do this for three years.”
She’s been standing in my doorway saying goodbye for nearly a decade. I don’t know what will happen when we finally close the door. I hope it will mean I get to open it to friends and loved ones who now have a better understanding of what Alzheimer’s really looks like. It’s not just forgetfulness, it’s not just for the elderly, and it’s not quick. It’s a slow, cruel disease that robs people of their past and denies them their future. I hope against hope I don’t share my mother’s fate, but if I do then hopefully by then there will be some kind of treatment. Until then, my mother is still Eileen, and I am still, and always will be, her daughter.