My Mom’s Last Day: May 21, 2015
Nineteen days before my mother died, she was admitted into the hospital where she’d been in and out of for the past month. I faced the choice, again, about whether I should drop everything — my young son, my husband, my job — and get to her bedside 2,000 miles away. I talked to the doctor in charge of her care, and he wouldn’t make the decision for me. To be fair, it wasn’t his job. I was reading The Signature of All Things by Elizabeth Gilbert at the time, and after hanging up with the doctor I picked up the book for a moment of distraction. Just a few pages in, one line caused me to close the book and go straight online to buy a plane ticket that would put me in Wisconsin for the next ten days. The words I read were: “Your mother is dead.”
Each day in the hospital took a different turn: one day it seemed like it was going to be her last, the next she’d improve and bounce back. Midway through my scheduled stay, her systems were stable enough to be released to the nursing home. I’d moved her there two years prior to address a plethora of ailments: dementia, diabetes, congestive heart failure, weakened kidneys, to name the main culprits. Settled back into her room, she was her ‘normal’ self: softly confused, not much to say, but the smile in her eyes was true.
Over the weekend, I spent the days sorting clothes, rearranging furniture and organizing knickknacks as she dozed in her recliner. HGTV was on for background noise, as always. This tableau had played out many times before, each instance on a smaller scale: first at the house I grew up in, followed by the double-wide mobile home she had downsized to, next the one-bedroom suite at the assisted living complex, and finally this last room in the nursing home. Having purged the space of several garbage bags worth of dusty clutter and clothes she never wore, I finished by sweeping, scrubbing and disinfecting every surface.
After Mother’s Day dinner with my in-laws — we all tried our best to ignore the fact I was missing my own son and husband terribly, and was likely going to be saying goodbye to mother for the last time the next day — I went back to the nursing home to say goodnight to my Mom. Gently tapping on her door as I opened it, I walked into the room feeling such relief with the tidy, clean, more open space. I don’t know if she even noticed, or really cared if she did. Clutter and grime never seemed to bother my mother in any of her spaces; as I got older, they made me claustrophobic. Either way, tidying up for her was something I could control, and it made me feel less guilty about having to leave her there yet again.
Before she realized I was there, I observed her sitting on the edge of the twin bed: dressed for sleep in a sleeveless nightgown on this warm spring evening, staring down at her dangling, bare feet which she swung lightly back and forth. She looked like a child, patiently waiting to be tucked in. Soft dusk light filtered in through the big picture window in front of her; the blinds were still up. I walked to her side and touched her cool arm. She looked up, smiling, and said, “Oh, hello.”
I flew home to Seattle the next day. For years and years, every time I had hugged my Mom and said goodbye before heading to the airport, I wondered if it was for the last time. That morning of May 11th, I knew it to be true. She was back in the hospital one week later.
On my bus ride in to work, I spoke with the hospital doctor about my mother’s prognosis. As her medical power of attorney, I knew I was no longer fulfilling her wishes to not prolong life artificially. The merry-go-round of her organs failing, being sent to the ER and admitted to the hospital, getting stabilized and released back to the nursing home only to start the loop all over again was untenable. The medication needed to keep her heart pumping was destroying her kidneys, and the counter-medication to help her kidneys was damaging her already severely weakened heart. Yet the job of medical doctors, hospitals and care facilities in this country is to keep their patients alive, period. There is no room for them to broach end-of-life discussions for fear of getting sued, and most families are horrified by the thought of ‘encouraging’ a loved one to die. I stumbled and stuttered as I got off the bus, grappling to find the correct combination of words to ask permission for what I wanted for my Mom: a humane path to her end.
“This just isn’t sustainable. Is there a way we can take her off her medications…” [Deep breath. Just say it, Carole, it doesn’t matter at this point if he thinks you’re the worst daughter in the world.] “…including her insulin? She has always been very clear with me that she has DNR (do not resuscitate) orders, and I feel like I’m going against her wishes with these extreme measures.” I pressed the phone next to my sweaty ear, straining to hear his response as I walked around the noisy, industrial block outside my work building. Without hesitation, the doctor said, “Yes, we can do that. It’s completely appropriate, and if it were my family member it’s absolutely the choice I would make for them.” I sagged with relief and tears ran down my face. “Ok. Thank you. Ok, good,” I said as I tried to get control of my voice. I knew even as it was happening that there was no way he could have brought the option forward himself, and we were both grateful I had finally asked this question. Later, I wondered how things would have been if I’d asked it while I was physically there. Might I have been with her when she died? But I didn’t, and I wasn’t. So now this story is what I’ve got of her last day.
Your room in the nursing home is quiet, dim. Linoleum floor, painted cinder block, picture windows looking out at the row of tall pines, standing like sentries in a line that holds position, only ever swaying slightly. You’ve been under hospice care since Monday. It’s now Thursday. They’ve brought in a special chair for you to recline in. This extra piece of furniture fills the room.
All your medications, other than hydration and comfort measures, have been stopped. You are in your chair, covered with a sheet and blanket, alone. Yesterday you made noises and seem agitated, but today you are still. The nurses have set up soft music playing on the cd player I bought you. [Did they choose the South Pacific soundtrack I sent? It’s your favorite.] The social worker assures me the staff is taking the best care of you. During our phone conversation discussing how hospice care works, she says of your caregivers: “Those girls love your Mom.” This statement makes me choke on a lump made of equal parts gratitude and guilt that sticks in my throat. “Those girls” are the ones there with you for your last days, not to mention they’ve physically cared for you over the past two years. I wonder what they must think of me, the daughter who lives 2,000 miles away and only shows up two times a year. I make all kinds of excuses about being the mother of a 7-year-old who needs me and a wife whose corporate salary is our family’s safety net; these are the priorities I have chosen. But sometimes, I wonder what I think of myself.
It is the evening on the day your son died, one year ago. When I make the decision to start hospice care, I send him a message carried by my heart: “Please, Al. Help Mom cross over.” He had been so powerless in his broken body to help you when he was alive, but his spirit proves to be much more powerful. He is here, saying, “C’mon, Mom. It’s time to go.” Your spirit looks up at him, smiling, and says, “Oh, hello.”
Your feeble heart contracts and relaxes, and then not again. How long before anyone notices you are gone? (I asked the same question that November morning when they told me you’d somehow wandered out of the facility and gotten locked outside, sitting on a bench through the darkest, coldest hours of the night before anyone realized you weren’t in your room.)
I just finish parking in front of our house after picking up Kieran from afterschool care when the head nurse calls to tell me you are gone. I pace the sidewalk as she adds, “I knew your brother, and I know what day this is. I’m so sorry.” The conversation is short, but expansive; my heart breaks a little more upon learning she lost her son a few years ago. I thank her for taking care of you and hang up. We walk around the house to the back door, and I see Michael standing at the kitchen sink. Kieran is ahead of me and announces, “Grandma Edie died.” Michael looks at me with surprise, then sadness. I love him for that look. He takes me in his arms, and I am safe.
Later, your best friend is at your side. She sits with you for an hour or so while the necessary paperwork is done to transfer your body to the funeral home. The scene is peaceful, two old friends sitting together. I am not there, but I’m so grateful that Peggy is. She has been there for us with each loss. The day after Dad died, I asked the question, “Who’s going to walk me down the aisle when I get married?”; she held me as I mourned all the things he’d be missing in my future. She stood outside Al’s house when the police found him dead inside, relaying to me over the phone as it happened, “He’s gone, Carole.” And now, she is here holding your hand, showing you that you are loved.
