Courtesy of BeingPatient.com | By Melissa Williams | Originally Published 06.15.2018 | Posted 04.28.2019
All caregivers for people with dementia reach a point when prayers are not for more time, or days of clarity and recognition. At a certain point, your prayers are simply for peace: for yourself, your household, your family, your loved one. When you reach this place, like I have with my mom, peace can only equate one thing—death.
I still remember the first time I realized that my mother’s death would come as a relief, and the immediate heartbreak that I felt. My mother was playing with my three-year-old son. He’s been her obsession since he was born, and I could rarely get a minute alone with him. She was like a shadow; wherever I was, she would be right there. As her disease progressed, I think she came to believe he was her son. One day, as she dangled a small car in front of his face, he swatted her hand away, sternly saying “NO!” With hurt feelings and the mind of a toddler herself, she threw the car at him, and then sat on the couch and slumped back, pouting and saying that he’s a mean child, and that he learned it from the other children in the house, my stepchildren. My heart broke when I thought about how much she used to love them all.
In that moment, I found myself suddenly overwhelmed by the peace that would come to our household when mom is finally at rest. I shook away the thought as quickly as it came. I comforted my son and went about my day as if it didn’t happen, any of it: her throwing things at my child, insulting my stepchildren, and dreaming of a life without her.
In that moment, I found myself suddenly overwhelmed by the peace that would come to our household when mom is finally at rest. I shook away the thought as quickly as it came.
To say that my mom’s death will come as a relief to someone who has never been on a journey like this would be like confessing my sins to the checkout clerk—it would probably make no sense, and I imagine they would look at me in disgust. However, as I’ve connected with other Alzheimer’s caregivers over the past year and found my voice while letting go of my fear of judgment, I found none of them spoke to me with disdain or disgust; rather, I was met with, “Thank you for saying this out loud,” “I feel this, every day,” and “I know exactly how you feel.”
I’ve realized that these thoughts are part of the mourning and grief process for dementia patients, which is is a long, daunting path. Every time a piece of my mother disappears, I grieve. Once the person I would run to in times of celebration and in times of sadness, now I barely recognize her. When her behavior becomes so erratic and uncontrollable that I have to keep her sedated for her own safety and everyone around her, I grieve. When I look at her and realize, again and again, that I no longer know this person looking back at me, I grieve.
Like around one-third of dementia patients, my mother’s symptoms include aggression. If I took an hour away to spend time with a friend, she would scream at me, saying I’m a horrible wife and mother. When her aggression started to get worse, the nurse told me to use the lorazepam. The first time I did, as I headed up the stairs to grab it, a fleeting thought entered my mind: Perhaps the Ativan, while keeping her calm, will help her give in to the disease that is ravaging her brain and making her more and more of a stranger I wish I didn’t know. Immediately following, another thought: “Who thinks these horrible things? I love my mom,” I reminded myself. But this is not my mom.
When I realized my mother was a stranger, it hit me like a train. I sucked in sharply and had to steady myself with my hands on the counter. My mom, the woman who raised me, who saw me at my best and worst, who applauded me and held me, who was the very definition of home, is gone.
But that’s the cruel plot twist of Alzheimer’s: She’s still sitting across from me at the table, staring at me or off into space, maybe talking about something seemingly normal, or possibly diving into the hallucinations and nonsense the disease has created in her brain, talking about treasure hunting or how the alligators are fat because they eat all the cigarettes. It’s as if she has been replaced by a carbon copy, a clone, with a whole different personality. And death—actual, physical death—becomes far less scary than the alternative: watching her transform into a stranger.
My mom, the woman who raised me, who saw me at my best and worst, who applauded me and held me, who was the very definition of home, is gone.
I know how bad it feels when the thought that death would be a relief slips in. I remember one particular moment clearly; it was shortly after mom was placed on in-home hospice care, and when I left to go to therapy that day (I am SO glad I had therapy that day), I lost it. In the car, in the waiting room and in my therapist’s office. And you know what the therapist said to me once I had composed myself? “I was wondering when you’d get here.” By here, she meant accepting my mom was dying, and that I was ready for it when she was. Turns out I wasn’t Superwoman, and I couldn’t stop time, or Alzheimer’s. On the flip side of the coin, I didn’t have horns and three heads either; I was merely human, doing what humans do. I was begging for release from the pain I was in, am in, will be in, until mom takes her last breath, which I intend to be there for.
I’ve come to realize that wishing for the end is a normal and natural part of the process as a caregiver when you are watching someone you love and care for dying from a terminal illness—especially one that steals them from you, slowly, over and over. The grief, what I know now is called “anticipatory grief,” is exhausting. I’m constantly bombarded by a litany of emotions, some of which I don’t believe words even exist for, and they tend to hit at the most inconvenient times: pediatrician’s office, dental chair, grocery store, pharmacy while refilling the hospice-issued lorazepam. Perhaps that’s because those are the only times I get to turn off my brain for a bit. When I’m in caregiver mode, I’m on, all the time. She comes first, no matter the consequence.
For the majority of the caregiving journey, you fantasize about the days past, when your loved one was well, and you grieve the fun you wish you could still have, the memories you long to be making instead of the ones you are being dealt. I’ve lost count of how many times I’ve taken off when my husband was home so that I could cry and scream in peace, and without fear of hurting my mom’s feelings.
When I first started thinking of life after Alzheimer’s, I was disgusted with myself. How could I be a good person when I’m constantly praying for death to enter my home?
Alzheimer’s has made my mother a ticking time bomb. In the midst of deciding how to give her car to my niece, my mother suddenly broke down, blaming everyone in sight—for what, I don’t know. She told us she’s not giving the car to anyone, and then she told us she wants to blow out her brains. She was begging, aloud, to God to just take her now. She didn’t know it, but I was sending up the same prayer. This is not my mom, I remember thinking. This is not the woman who raised my sister and myself into the women we are today. The shouting continued for hours. I begged God silently in my mind to take her, right then. I begged for a massive stroke. When her social worker from hospice called, I broke down. And she came. And I’m forever grateful she did. And still, I feel no guilt for wishing for an end to this awful disease.
The last leg of this journey is so damn hard, and makes me question my sanity daily. I can’t sit here and paint a pretty picture of caring for my mother in her last days, because I’d be lying. When I first started thinking of life after Alzheimer’s, I was disgusted with myself. How could I be a good person when I’m constantly praying for death to enter my home?
With the passage of time, I’ve been able to realize that there is nothing selfish in these thoughts. They are quite selfless, if I allow myself to look at them without judgment. I am, and we all are, entitled to all of the thoughts and feelings that come with being an Alzheimer’s caregiver. And death is a huge part of Alzheimer’s—the biggest, really. At first, it’s so far off in the distance that it’s not even on the GPS, and then, as time passes, it begins to slowly emerge on the horizon. It’s kind of like driving on an open road, in a convertible, on a sunny cloudless day. Everything is OK, the car has gas, my favorite music playing is full blast. When I come around the bend, there are ominous clouds on the horizon. I pull off, and put up the top—damn, those clouds are dark.
In this vision, my mom is my ever-present passenger. In retrospect, this isn’t my journey at all. It’s hers. I’m just a driver, a first mate. I’m just getting her where she’s going as comfortably as possible. This is a chapter for me. I have more to come. For Mom though, this is her final chapter, and I’ll be damned if she sees me scared or shaken by the clouds headed our way. I smile at her, and tell her I love her.
Dark clouds still loom ahead for us. My mother is in hospice, but there is no telling how long she will last. She was diagnosed in 2011, and she’s been in the moderate/severe stage since October 2017. But now that I’ve given myself permission to have these thoughts, the dark clouds are no longer as scary. I know it’s there that she will find peace, and light will be waiting for me on the other side of the storm.