I volunteered to spend the first night in the ICU with her. Volunteered is really not the right word. I could not, would not, leave her side at this point. I’m a news junkie. I love watching the news in case I can witness a sensational breaking news story. I also stop at car accident scenes in case I can witness some heroic life-saving endeavor. I guess the same was true there in my mom’s room. Whether she miraculously ‘came back to us’, declined, or just needed a drink of water, I wanted to be there.
I think at some point that afternoon I went home to gather some things for my unexpected stay. Pillow, blanket, socks, chargers, and a toothbrush. The bare essentials. I don’t even think I brushed my hair or showered those first few days. And I may or may not have snuck in a water bottle filled with wine. I knew that sleep would not come easy. So I needed a little something to take the edge off.
Had I known that the sofa in her room was made of plastic, and that we would sleep there for the next 10 nights, I probably would have brought a plush mattress topper. There’s nothing like waking from a fitful two-hour night’s sleep to find your face stuck to the side of a plastic cushion after who knows how many butts have sat on it. I’m normally a germaphobe but this was not the time or place.
I found strength within myself during those 10 days in ICU (beyond resisting the need for fried chicken sandwiches and macaroni and cheese – comfort food – every day).
The first night took me to depths I hope no one else ever has to experience. I didn’t have a name for it at the time, but I would soon learn the horrors of sundowning. I mean, what is sundowning anyway? As we settled in for the night, my mother hooked to dozens of tubes and machines, and me on that plastic couch in the clothes I had worn that morning, I felt a sense of peace. That would be short lived.
What is sundowning?
According to the Mayo Clinic, “The term “sundowning” refers to a state of confusion occurring in the late afternoon and spanning into the night. Sundowning can cause a variety of behaviors, such as confusion, anxiety, aggression or ignoring directions. Sundowning can also lead to pacing or wandering.”
As night fell, my mother started becoming agitated. She was restless, kicking her legs, beginning to thrash. I guess the nurses were used to this phenomenon because they were not concerned. I tried to soothe Mom by talking calmly to her, combing her hair with my fingers, reassuring her that I was with her. But sundowning was a monster I could not tame.
At one point during the night, she began pulling at the IV lines with blood pooling on the tape and screaming. I opened the door and yelled for the nurses. They had seen this before so, again, did not appear to be alarmed. Because of my mom’s injury, they were unable to give her sedatives. And while I learned to cherish and appreciate nurses, I could have used a bit more reassurance and perhaps some downright honesty on what this wild ride was about to become.
Because she was pulling at her lines, they told me they would have to restrain her. I watched them tie her hands and legs to the bed as tears streamed down my face. She fought and struggled until her body suddenly relaxed, as if she’d given up, like a baby fighting sleep. I climbed back under my blanket as the plastic cushions crunched beneath me. The room fell silent. But as my body began to relax, the devil arrived. And I don’t say this lightly. This was not my mother. It was some strange beast. And I forgive her for letting me see this side of her.
She began yelling. And wailing. “My mother didn’t love me.” “Get the fuck away from me!” I had never ever heard my proper Southern Belle mother use a curse word, but I would learn that sundowning does not conform to Southern manners. I covered my ears. I didn’t know who this person was. And this is where that strength I found within myself came in. I dug into my purse and found my earbuds. I turned on the music on my phone as loud as I could, climbed under my blanket, and tuned it out. She was restrained so I knew she could not hurt herself. The night felt like it would never end. As I would doze off, she would stir and I would rush to her bedside. I tried to explain this to my brothers, but they too, would ask, “What is sundowning?”
As my brother Jeff prepared to stay with her the next night, I gave him permission to put on headphones and ignore her screams, but I knew that he could not, would not, do that. This is where my brothers and I differed. I could turn off and ignore these episodes. This was NOT my mother; it was some strange poltergeist or devil. My brothers were never able to make that separation. These episodes were extremely hard for them to watch and tore at the core of their souls.
At this point, we were 24 hours in and the doctors best prognosis was, “We’ll just have to wait and see.” The bleed had stopped but there was no way to know the damage that had been done. She was fairly lucid much of the time, but very, very slow. She was eating well and attempting to follow doctors’ commands as they completed neurological tests. But there was no way to know the depth of damage. Only time would tell. Did I mention that I’m incredibly impatient?
Jeff made that difficult call to Steve to let him know what happened. I can’t imagine what he felt being so far away. And in utter and complete shock. Hospitals made him uncomfortable. He had been like that since my father’s illness. But he returned a day later and joined our vigil.
For the most part, the days were calm and pleasant as we all lined up on the sofa watching and willing her to instantly recover. That is, until the devil that is sundowning came out at night. It’s like watching a horror movie but the guy with the knife just keeps coming at you. You can’t run. You can’t grab the knife. You just wait for what’s going to happen.
Ten days of this. We longed for the slightest respite as our “shift” came to an end. The morning relief brought coffee, while the night shift stepped out for dinner and a glass of wine before settling in for a long, what’s-in-store-for-me-tonight evening. As if to make matters worse, this particular hospital was attached to a children’s hospital so to get outdoors for respite or to grab a bite to eat meant taking a trip through the lobby where sadness was on full display. Bald children. Limbless children. Crying families. It was a stark reminder that despite my mother’s condition, I did have things to be thankful for.
She would spend her 81st birthday in the ICU.
I snapped back to the reality of the bright lights of the ICU. She seemed to improve slightly each day and met all of the milestones of post-aneurysm recovery. And don’t get me wrong here, I am sincerely grateful to all of the doctors and nurses and respect their profession. But they almost had a cavalier attitude. They deal with this type of illness and behavior daily. But this was our mother. We needed answers. Or at least reassurance. Or a little empathy. But they couldn’t give us any. The reality is that her brain was in control (or not) and no one could know how or if it would heal. We wanted percentages. Anecdotes. Reassurance. But there was none. Every aneurysm is as different as its victim.
This was our mother. Ensuring her comfort, and future, were our highest priority. So to her medical team, we became “that family.” That squeaky wheel family. We asked countless questions. Challenged authority and questioned procedures and medications. We pushed for more answers. Asked for specialists. This is where our journal started. We recorded every conversation, every medication administered, every bodily function. Partly because it helped us monitor her improvements and declines, but also because we were alternating our vigil. My brothers, my sister-in-law Candy, and I were all taking turns at her bedside so the journal was our continuity of care.
We gave her sips of water and helped her feed herself. We told the nurses when she needed to ‘go potty’ and use the bedside toilet, politely excusing ourselves to give her privacy but also partly because the burden of watching her so helpless was almost too much to bear. We cheered her on as the doctor’s conducted frequent neurological tests on her. We frequently checked her IV lines to ensure they weren’t leaking. We were now her caretakers. Her advocates.
“Have you seen my mother naked?” became our private joke. You know that whole adage that all modesty goes out the window when you’re on that table about to give birth? Well, the same could be true when you’re a dying parent. Or watching a parent die. Modesty is gone.
One thing I’ve learned: if you can’t find humor in such sad situations, you’re doomed. Our motto was: “If you don’t laugh, you’ll cry.” I mentioned the beloved “journal” that filled a notebook for 100 days with every possible detail about her recovery, or lack thereof. But what I really cherish is our group text chain. Within those first weeks, we were at well over 1,000 text messages. Some serious, some downright depressing, but some that are also hysterical and will give you a glimpse into how we were able to make each other laugh – our coping mechanism.
These are actual unedited texts:
From my brother at the hospital: “One thing I forgot to share. The ER dr came by before mom went up to a private room. She was asking mom if she knew the month, date or day of the week etc. of course mom couldn’t answer any of her questions. So the dr points to her own eyeglasses and says to mom ” what are these on my face?” Mom looks at her face and then thinks for a second and replies “wrinkles?”
Text from my brother at the hospital: “Reporting from the front lines: metropropol and Xanax deployed in banana pudding.”
Text from my brother at the hospital: “She hated the pull ups because they are uncomfortable. Not sure what to do. Girls?”
Text from my brother at rehab: “After therapy I took Mom to breakfast and left her. Went back in 20 mins to get her. The other 3 people had left. Mom was cleaning up the dishes everyone left on table. Had scraps from table on one plate and had stacked empty plates and bowls all together.”
Me texting to my brother who is with her at hospital: “Have a conversation with her nerves. This is not their first rodeo. I’m quite sure they have experiences with other patients on a regular basis and perhaps could give us some suggestions or advice on what to do during the downtime.”
Me: “Nurses. Not nerves.”
Brother: “Oh man! I just had a long talk with her nerves.”
Brother texting from hospital: “She keeps talking about a girl who came to do something at her house today? Not the maid. Something else? It was a girl who she saw today who put something somewhere “in the “”””. This is like a really hard crossword!”
And there were moments of lucidity:
Brother at rehab: “Some volunteer just brought Mom a magazine. It is US weekly and the lead story is about the Kardashians. I asked Mom if she wanted me to read her a story about the Kardashian’s. She looked at me with a sour face and said ‘please don’t.”
There are hundreds, almost a thousand, more. Some funny. Many sad.
I often wonder about families where there is division. Dissent. Disagreements and apathy. Lack of support. Nonconformity.
My brothers and I had not been this ‘in sync’ since we stood in a small circle as a family on a hospital floor 28 years prior when a doctor asked the fateful question, “Do you want your dad to be put on life support?” Without hesitation nor the need for discussion, we knew we were in complete agreement. No. He had suffered enough. There was no chance for recovery so why prolong it.
Ten horrible, sleepless days and nights on that ICU rollercoaster. I had so much powdered Sanka from the “family lounge” that I almost gave up coffee altogether. And having a Chick-fil-A right in the hospital proved to be a bad thing. Can you say “stress eating”? But between the four of us, there was no wavering. We were a fortress in supporting each other and her recovery. There were morning Starbucks runs, mid-day Panera runs (often more than one a day) and, yes, late night wine runs. You do what you can to stay sane.
I think back often to that day before this horrible nightmare. It was the perfect mother-daughter day. Shopping and enjoying a glass of wine over a leisurely lunch. She was incredibly indecisive when it came to ordering from a menu so I often ordered for her. This day, I ordered her the Chinese chicken salad. Yet again, proof that I knew my mother so well as she exclaimed, “This is the best salad I’ve ever had. Can we come back again tomorrow?” If only she had the chance.
Surviving a brain aneurysm of this scope is somewhat rare. And surviving and regaining some semblance of one’s former self is even more unusual. But the hospital neurologists told us we had to give it six months so we held onto hope.
After 10 days, the doctors told us she was ready to be moved to a rehab facility. As if the stress of the past week wasn’t enough, we had to fight, or advocate is a nicer word, to make sure she got into the best facility. Just like that time I bugged the crap out of the superintendent of the coveted private school I wanted my son to attend, I called the rehab admissions office repeatedly over the next two days to ensure they were holding a bed for her.
The day she was due to leave ICU was like a birthday. We felt new hope. She sat up in a chair, smiling. We dressed her in a bright purple top to signify this new beginning. It was the first time we felt like we would get our mom back.
- Chapter 1: The headacheI was standing in the baby aisle of Target shopping for sippy cups, picture books, and baby wipes. It suddenly occurred to me that I had not been in this aisle for 20 years but here I was again. Only it wasn’t for my kids or my grandkids, I was there shopping for my mother. I was buying bibs and burp pads for my own mother. My eyes welled up with tears. I wanted to…
- Chapter 2: Sundowning and temper tantrumsI volunteered to spend the first night in the ICU with her. Volunteered is really not the right word. I could not, would not, leave her side at this point. I’m a news junkie. I love watching the news in case I can witness a sensational breaking news story. I also stop at car accident scenes in case I can witness some heroic life-saving endeavor. I guess the same was true there in my mom’s…
- Chapter 3: (Re)Learning milestonesAfter my father died, my brothers and I began to look out for Mom. We were overprotective. I can remember once she moved to Florida, she was living alone, and if I called her at 10pm and didn’t get an answer, I would panic. (This was before cell phones.) It was ironic given that she spent so many nights up waiting for me as a rather wild teenager. We moved her out of the hospital…
- Chapter 4: Making sh*tty decisionsAs we prepared to bring her home from the hospital, planning to ride out those six months to get our mom back, we reconfigured her home for our new normal. We converted the kitchen pantry to a bathroom that could accommodate her walker and unpredictable gait. We installed raised toilet seats with handrails and grab bars in her shower. We lowered her bed to the floor because she still tried to get up every night.…
- Death is birth in reverse: A daughter’s diaryI’ve been wanting the tell my mother’s story for some time. She was full of life, my best friend, but that was all cut short by a reaction to a medication that caused a brain aneurysm that has left her severely incapacitated. I was going to write a book, but thought it might be more beneficial to share it here, in real time, where I can offer resources and live links for others who may…