Updated: Apr 12, 2021
There is a sound reverberating through the house tonight. It’s the sound of my mother’s labored last breaths. She will soon find her way to a different dimension. We are all tired. She is tired, she deserves to rest.
As I was trying to fall asleep last night, after my shift in the rotation of medication application, I was thinking about when my kids were little and I found a bird in our garden that had been left there by our cat, Benny. He was a fierce hunter and we would often find him with feathers hanging out of his mouth, or finishing the last bits of a furry morsel he had trapped and snacked on. But this bird wasn’t dead, it was suffering. It was clearly not going to live, Benny had done a number on it, but he didn’t finish the job. He had left it in the garden just outside my bedroom window, and I could hear it flopping around and making noises you don’t normally hear from birds.
I went outside and found it lying there staring up at me, in shock, it’s breathing labored. I gently picked it up and brought it inside, away from the potential of Benny batting it around and playing with it for his amusement. I sat on the stairs and stroked its head, pondering what would be the best choice for addressing the problem. I knew in my gut that I needed to put this poor animal out of its misery, and a little voice in my head said, “You can do this. It’s for the best.” I kissed the bird, apologized for what my cat had done, and then I broke its neck. It was done, and then the tears gushed out of me. My sweet boys hugged me, saying they understood and they were glad I ended its suffering.
As I lay there last night in a half sleep, looking back on the hellacious day of addressing one crisis after another with the rapid decline of my mothers mental and physical wellbeing, all I could think about was how angry I am that I don’t have the right to do the same thing for my own mother that I can for an animal. I’ve sat with numerous animals in veterinary offices, holding them as they were euthanized humanely to end their suffering. It is a brutally real moment, but one I have the ability to be present to gracefully. My only thought as I was drifting off to sleep last night was, “Why do I have to let my mother suffer, but I can humanely put down an animal?”
Yesterday started with me waking to a rustling noise in the room next to me. I knew my mother was awake, so I got up to start the routine of helping her through her day. We brought mom home last June, during the pandemic, instead of putting her into memory care, because we felt we would have been saying goodbye then and there, and have no control over her care. It was a big commitment, but my brothers and I knew it was the right choice, we would have it no other way. She became a member of my brother's house, and I became a part of a family pod that revolved around caring for her.
Because there is no definitive rule book when it comes to dying, especially when Alzheimer's is involved, I didn't think we were heading for one of the most difficult days of my life. I opened my mother's door and found her standing by her dresser with her sweatpants and disposable diaper down and twisted around her ankles. She had stopped eating a couple days prior, and was falling into a deep sleep in the early evenings before we could get her laxative cocktail into her for two days in a row. Because she had eaten so little for a few days we didn’t think it as a huge crisis, but it soon became clear that the amount of painkillers she has been on to keep her comfortable were doing their hidden plan of keeping the system from working properly, and she was in a panic, knowing instinctively that something needed to happen with her body, and her urge to get to the bathroom was intense.
You might think, “Well, get her into the bathroom so she can use it.” If only it were that simple. Imagine if you will, trying to get a 104 lb willful toddler, who has the strength of ten men when she doesn’t want to do something, who doesn’t know how to walk anymore and is terrified of falling, having a 12 hour temper tantrum and everything you say to them doesn’t register because they don’t understand any of the words you’re saying to them. I won’t go into the details of every frantic swiping at our faces, or wipe up of feces on a plethora of surfaces, or every scream, or every time we had to hold her down so she wouldn’t hurt herself getting out of the newly delivered hospital bed the Hospice team had brought that morning. I won’t tell you how every one of the five calls I put in to the Hospice triage nurse through the day went, or what it felt like to hear my mother, who had been given heavy medication and sedatives to keep her calm, scream from her room, followed by a loud thump, just as I had laid myself down for a brief rest at the end of that hellacious day. Or how that was the precursor to a night of fitful spurts of rest, colored with the terror that I would wake to the sound of screams. A long night that concluded with finding my mother in a pool of her own foaming saliva. If you think I’m exaggerating, I’m actually saving you from the worst of it.
Today has been the polar opposite, almost eerily calm. Even the animals in the house are walking around with cautious restraint and aplomb, a far cry from the normal chaos of cats and dogs dancing their dance. I sit here tonight, listening to the time between my mother's breaths get longer and longer, I’m grateful for the time I’ve had with her for the last nine months, and wish to hell I could erase the last five days, for her and for those of us that walked it with her. There is no reason I can see that makes this unnecessary period of struggle, emotional pain, physical anguish and outright terror my dying mother has had to endure have meaning.
Alzheimer's is an evil disease. It slowly eats away at the brain, robbing a person of their joy and dignity. You not only have to deal with the deterioration of the body, but also the mind, and that carries a whole other set of possibilities and complications. And Alzheimer's has no playbook, it’s a game with rules that are constantly changing. As soon as you think you know what they are, they no longer apply. Why do we force our loved ones to keep playing this merciless rule defying game? Why don’t we give them the option to throw the flag, call it a draw and let the ballpark lights dim so the player can make a graceful and quiet exit on their own terms? Both of my parents have died painful, senselessly stressful deaths, mom from Alzheimer's, dad from esophageal cancer, that in my eyes were completely unnecessary endings for anyone to have to endure. It’s inhumane and I’m angry about it. But I will press send now and let it go, so I can sit with this woman who brought me into this world, and hold her hand as she finds her way to the next.