Jan 31
Impatiently Waiting for My Mom to Die
A horrific and allegedly peaceful death
April 2019
…Above all else, Linda loved her family, and her greatest joy in life was raising her three daughters. (Full disclosure: it’s us writing this.) She filled our lives with French braids, books, gingerbread men, handwritten notes, tea parties, and white turtlenecks. She gave us all the opportunities she never had, loved us unconditionally, and made our lives so fun.
Mom made friends with strangers, loved giving gifts for no reason, and played more practical jokes than any adult we’ve ever met. She was humble and non-judgmental, naturally accepting people for who they were, and having had a wildly eclectic circle of friends to show for it.
and having had…
That typo haunts me more than my dead mom does, which is never. I never hear her voice or see her face or think it’s her when a light burns out. She’s just gone.
I write my portion of her obituary while she is still alive, but only because there’s not much to do while you’re living on the floor of the hospital that is designated for dying, and because it is taking her so long to do so.
I’m here with my dad and my two older sisters. Their husbands and daughters come and go, but we four have been at the hospital almost every day since a blood vessel burst in my mom’s brain 28 days ago. We originally set up camp in the waiting room of the brain trauma unit, sleeping every night on reclining chairs and couches that were too small for us to extend our legs. We would occasionally leave to shower, but there was an expectation, one I think I still resent, that we’d quickly return to the camp. Once an hour the doctors would do a formal evaluation of her progress, asking her to raise her hand, lower her hand, open her eyes, close her eyes. My dad insisted on being in the room for every evaluation and eventually started conducting his own, becoming a self-appointed medical expert whom the doctors grew to despise.
He ignores them whenever they use words like worst-case or most likely, only listening when he is able to coerce them into saying things like it’s possible and well, yes, there have been cases. But as days go on and the small signs we were already reading too much into start to disappear, when she can no longer blink for us or squeeze our hands, hope starts trending downward.
Hope jumps off the cliff at different times for all of us. My hope is the first to jump, confidently sprinting to the edge and leaping off before a crowd has even gathered to watch. Kim’s hope was not far behind, while Kelly’s stood at the edge, paralyzed with indecision before it did what it had to do. My dad’s hope clung to the edge of the cliff and crawled all the way down, scraping itself on jagged rocks until its arms gave out and its bloody fingers finally lost their grip.
And now we are in a hospice where the hopeless people are temporarily stored.
I hate everything about this place. I hate the patronizing, overly cheerful tone of the nurses who seem to be living in a different reality than me. I hate the priest who enters our room, uninvited and wrongly assuming his presence is valued. I hate visitors from the outside world who get to stay for an hour and leave. My body is filled with so much contempt that even the most innocuous of items become my targets. I hate the color of the blankets, the font on the posters in the hallway, the store-bought sugar cookies in the communal kitchen, and whoever is leaving them there. I hate myself in this place.
But the small moments of good are amplified, and I hold onto them. There is one nurse who speaks to me in a normal voice and doesn’t try to convince me that death is beautiful. She looks at family pictures we’ve taped to the walls and asks questions about the person my mom was, instead of the body she is now. There are volunteers who do nothing but meander around the halls in their green vests, rearranging tea bags and looking for small ways to help. Normally I would despise their lack of purpose, and at first I do, but when one of them touches my arm while I’m making coffee and asks if they may do it for me, I feel cared for in such a way that I fully understand and appreciate their quiet value. I love the green vests and later become one.
We become experts at cracking pistachios, and the distraction is so addictive and enjoyable that we continue to do it until our fingers bleed and we create piles of unwanted, unshelled nuts. The family room here is much quieter and calmer, and one of the couches has a pullout bed. I’ve grown oddly comfortable sleeping next to my two adult sisters, and sometimes we forget why we’re here. Kim and I will giggle in a way that feels inappropriate for the setting, playing on our phones and watching movies like we’re having a sleepover.
Other families filter in and out, but nobody seems to stay as long as us. I’m not sure if it’s because we’re all privileged enough to have jobs that we can not show up to for a month, or if our family is just really good in moments of crisis. But it’s not because we’re good. If we were good, we probably would not be here.
Mom’s blood vessel bursting was the result of years of heavy drinking. Any chance of recovery was thwarted by the alcohol’s effect on her blood, which made it thin and unable to clot as needed. We learned that her liver was cirrhotic and likely to be just as deadly as the hemorrhagic stroke that got to her first.
People do not suffer to this extent without the people around them noticing. They do sometimes suffer to this extent without the people around them caring. And despite our eleventh hour efforts to prove otherwise, we did not care enough. Some of us, one of us, the one who is now out of his mind with guilt and regret, barely cared at all.
Not once during this ordeal do I ever feel tempted to ask the god I don’t believe in to save my mom. I feel more sure than ever before, which was already pretty sure, that he or she or they doesn’t exist. But as the experience in hospice drags on, I do start to believe that maybe the universe has the power to punish us and does so severely.
It’s hard for me to come up with any other explanation as to why my mom has to die like this. I’m not talking about the stroke. This makes complete sense to me and I had been loudly predicting it for years. It’s our time in hospice that I can’t make sense of. I think back to the time, years earlier, when this same group of people was in a different kind of hospital, circled around a different family member. We cried and said our final goodbyes, and moments later our German Shepherd was injected with a medicine that peacefully ended her life, sparing her and us the agony of a lengthy, natural death. The comparison is infuriating and the humane solution is obvious, but because my mom is human, we are legally trapped in this nightmare.
When we made the painful decision to remove life-supporting measures, we were told to expect a calm and peaceful death, that her body would only hold on for another day or so. This is not turning out to be the case. There is plenty of suffering, and we’re nearing two weeks of it. Blood leaks from the stitches on her shaved head as she experiences several additional, smaller brain bleeds. She constantly opens and closes her mouth as though she’s begging us for water, which we are forbidden from giving her as it will prolong what is left of her miserable life. Her fists and hands clench, and agony spreads across her face whenever she goes too long without morphine. They assure us she can’t feel pain and is mentally unaware of our presence. But when we play home movies on the hospital TV and the voices of our younger selves fill the room, she starts to cry.
Dad has been out of his mind since the moment this started — never sleeping, never eating, never not crying. But now he is angry at the world, screaming at nurses and snapping at all of us. Mom is so frail I can’t touch her anymore, and sometimes she gasps for air like she’s drowning. With increasing frequency, the respiratory therapists come and ask us to leave the room, trying to spare us from hearing the choking sounds she makes as they suck out the phlegm that is pooling in her throat.
The nurses who started off so calm and assuring now look at us with pitiful glances, silently acknowledging that this is horrific. Kelly and I have a discussion about whether or not we should cover her mouth and kill her ourselves, but we’re too afraid to do it. And then the seizures start. Her body convulses for ten minutes at a time, and it’s a breaking point for all of us. Dad demands that the doctors make it stop, grasping for control of the situation when there is none to be had. They threaten to remove him from the hospital if he can’t calm down.
I cannot take it anymore. The nurse who asked about the photos tells me it’s ok for me to leave, that my mom would understand. I leave immediately. My dad asks if I want to say goodbye one last time and I say no. I take the train back to New York, I cook myself dinner, and I sleep in a real bed in an apartment all by myself. Life outside the hospital feels foreign to me now. I wake up the next morning and get a text from Kim that she died. I shower, get dressed, and head to the train. I go to work as though the past 35 days never happened.
Pictures from the wall.
