I 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 drop to my knees but I’m an ugly crier. And my eyes swell even after just a few tears. I took a deep breath and headed to the baby food aisle.
I was her mother, her caretaker, now.
4 weeks prior:
It was a beautiful sunny fall day in Florida and I decided to take my mom shopping. She was only 80 years old but back-to-back knee replacements and mild cognitive impairment made it more difficult for her to get out on her own. Plus, she’s a bit of an old clothes hoarder. There are blouses in her closet she wore when I was in college. But she hated buying clothes for herself so I (finally) used my fashion merchandising college degree from 30+ years earlier to outfit her with old-lady comfort yet stylish pieces. Seriously, I can pick five outfits off a rack, send her into the dressing room, and she’ll love every outfit. I do the same thing with menus in restaurants.
We would end up at the cafe in Nordstrom whiling away the afternoon over glasses of Prosecco and making our plans for the next week. My brother, her primary caretaker and roomie, was off on vacation so I came from my home in California to stay with her.
It was the perfect mother-daughter day. Less than 24 hours later, she was laying in a hospital and I didn’t know if she would live.
Friday night, our daydrinking turned into our usual evening of sitting on her beautiful lanai looking out over a nature preserve sharing a bottle of Cabernet. I think she went to bed early while I probably opened another bottle of wine while I caught up on the news. I usually got up in the mornings before she did, mainly because she was a bit slow thanks to age and arthritis, and I felt more comfortable being in the next room when she climbed out of bed and shuffled off to the bathroom to start her day. But this particular morning, I stayed in bed. Perhaps it was the wine, perhaps it was fate telling me what was coming. She gently knocked on my door and opened it saying, “Something’s wrong. I have the worst headache of my life.”
I knew those words. And I knew what they meant. They were symptoms of a brain aneurysm. I calmly said, “Okay, let’s get you dressed so we can go to the ER.” She was especially stiff in the mornings so I gently sat her on the bed to help her get dressed. I buttoned her blouse with one hand while I discreetly texted my brother Jeff with the other hand. My two brothers and I talked or exchanged messages daily about my mom as we were three doting, overprotective kids. You’ll learn why later in my story.
Jeff lived in the same neighborhood just a mile away and he responded, “I’m on my way.” I had planned to call an ambulance but since he was so close, he said he’d drive us. She still seemed fine but a bit distressed so we focused on trying to remain calm as we drove the 20 minutes to the hospital. The triage team knew as soon as I said “headache” that she would be a priority patient. As the nurse was taking her vitals, she was chastising me for driving her to the hospital overselves rather than calling an ambulance. She too, knew the symptoms of a brain aneurysm. I really didn’t need guilt added to my incredible level of stress and I’m pretty sure I snapped back at her. The reality is, by the time an ambulance arrived and navigated her neighborhood, we were already halfway to the hospital.
I have a daughter who has severe asthma so I’ve learned to appreciate emergency rooms that recognize the severity of situations. Yes, I’ve been that squeaky wheel in ERs with my daughter fighting to get her back into a room so she can get treatment. This is the worst feeling as a mother and a daughter-turned-mother watching someone you love in distress and not being able to do anything about it.
The ER doc came into the room and began assessing her. It’s widely known that the quicker a stroke patient gets treatment, the greater their chances of survival. Of course at this point, I still didn’t know what was wrong with her but anything with the head scares me to death. The doctor called for a CT scan STAT and told me to follow them as they wheeled her bed down that long, gloomy hallway. I waited outside, wringing my hands, unaware of my own headache (from last night’s wine). Within minutes, the doctor wheeled her out and calmly yet alarmingly exclaimed, “She’s got a brain bleed. We need to get her downtown.”
Cue the ugly crying. I am not one of those who likes to cry in public. I don’t know why, but I tend to have incredible control at funerals or in sad movies. Maybe it’s because my eyes puff up with the first tears or maybe it’s a control thing. I don’t know. But this was my mother!
We returned to her room in the ER where Jeff was sitting in a chair in the corner, texting. Probably work to let them know he was tied up or possibly his wife Candy to keep her updated. I blurted through my tears the doctor’s exact words. As they readied her for transport to another hospital, I quietly whispered to Jeff, “Should I ask if they’ll let me ride in the ambulance with her?” He said, “of course.” I couldn’t imagine putting her alone, in the back of an ambulance with the frenzy of activity. I wanted to be with her, to hold her hand and reassure her that everything was going to be okay. Minutes later, I was in the back of the ambulance with her making the trip downtown where they were more equipped to deal with a potentially deadly brain aneurysm. I wondered: Can you survive a brain aneurysm?
The Brain Aneurysm Foundation has some great statistics and information.
So, Xanax. I kept one in my purse at all times after a panic attack on an airplane ten years earlier. I have anxiety and I’m claustrophic. So the idea of getting stuck in an elevator, or an airplane for that matter, would send me over the edge. So I keep a Xanax in a secret pocket of my purse for just-in-case times. This was one of those times. If for no reason other than to steady my shaking hands and slow my rapidly beating heart. I’m not going to lie. I relied on them often over the next few months. I’ll spare you my responsibility speech but I did use them responsibly.
The hardest thing in those first 120 minutes was seeing my mom go from being lucid and aware, yet scared, to incoherent and unresponsive. I think back often to that exact moment, when I saw that change. One minute she was looking at me through anxious eyes as the doctors and nurses feverishly worked around her to gather vitals. I was watching her, trying to reassure her with my eyes, but suddenly, I saw her eyes go hollow. I can’t explain it. You’d have to see if for youself (and I hope you never do). She was suddenly distant. Changed. I yelled to the nurse, “Something just happened. It’s like she’s not here anymore.” She knew. This change in awareness indicated a significant decline. That exact moment is when life as I knew it changed. That’s when I instinctively knew I lost her. She didn’t die, but my mother as I knew her did.
Let me backtrack. My family is one of those ridiculously close, incredibly supportive families, primarily because we were pulled together by the gut-wrenching death of my father at just 56 years of age. The day he died (when my mother was the age I am today, 54), my brothers, Steve and Jeff, committed to take care of my mom for the rest of her life.
But as this was all happening, Steve, the oldest sibling, had taken his annual sabbatical to Yellowstone, his happy place, to R&R and indulge in his hobby for amateur photography. He had been my mom’s caretaker for years. He never married so when she was diagnosed with mild cognitive impairment (a precursor to dementia), he stepped in, and moved in, to help her manage daily life. They were great companions for each other. He took her to lunch daily, fixed things around her house, took her on road trips to the mountains, and as her oldest child, they had a sweet co-dependancy.
So imagine having to make that phone call to tell him what happened to her. We knew that he was in a remote area of the park for a few days so we decided to wait another day to call him. Perhaps we would know more about her condition by then.
I had done my share of time in ICUs between my daughter’s asthma and debilitating migraines that started at the age of 4. My father was in and out of Johns Hopkins Hospital fighting liver cancer when I was in my mid 20s. I was fascinated by medicine and the pace of an ER and the drama of it all. After my dad’s death, I actually visited the local medical school to explore the possibility of enrolling. But I was 26 years old and newly married and the thought of waiting 10 years to start a family was daunting. I took the easy way out and I regret it to this day. I should have been a surgeon. I digress…
At this point, it was clear that she had suffered a brain aneurysm. I had very little concept of this condition. I remembered as a young child visiting my grandmother and hearing that her neighbor, a mother with two pre-teen boys, dropped dead of an aneurysm while cooking breakfast one morning. I had another friend whose thirtyish newly married brother was rushed to the hospital with a headache and he died before she could get there. I had yet another friend whose father had an aneurysm that was more of a clot and they were able to do surgery and insert a tiny coil into the vessel that broke up the clot before it could burst. He’s fine today.
But my mother’s was different. It was an actual bleed, not a clot. As we told the doctors the current medications she was taking, one raised cause for concern. It was a blood thinner prescribed for her newly-diagnosed AFIB (which I still question to this day, both the severity of the condition and the need for medication) that I would later learn was rushed through clinical trials so a reversal agent had never been developed. Other blood thinners have reversal agents so if there’s a bleed, it can be stopped. Because this one was fast-tracked, there was no reversal. We had to let her brain bleed and stop on its own. This was the day I vowed to fight and expose and bring down Big Pharma. I’m still working on that.
But it was pretty general consensus among all doctors who treated her over the next few months that drug was (probably) to blame. There was a 1.5% risk of a brain bleed and it was her (un)lucky day. Several doctors shook their heads in frustration and distress as they learned that my incredibly vibrant mother laid there in this condition because of a freaking drug.
I would spend the next few weeks calling attorneys to learn about our legal options. My mad Googling skills and numerous conversations with doctors led me to a dark, scary, dead end road. A lawsuit had been brought against the drugmaker by a family with an eerily similar experience, only their loved one died. Other families joined the suit but it was thrown out in court because the judge determined that said drugmaker had met their requirement to notify patients of the risks of the drug. I’m quite certain the cardiologist who prescribed it didn’t sit this 79-year-old woman down and explain the 1.5% risk of a brain bleed and what that could mean to her life, and ensure she understood and acknowledged it. My mother did have a penchant for reading those printouts stapled to your prescription bag but again, without a medical degree, I’m sure she glossed over this not-so-minor detail. If you learn anything from reading this book, it’s to take these side effects and risks of medications seriously, even, and especially, those microbursts at the end of drug commercials read by the speedtalking voiceover.
Symptoms of a brain aneurysm
According to the Mayo Clinic, these are the symptoms of a brain aneurysm:
Common signs and symptoms of a brain aneurysm that has not ruptured include:
- Sudden, extremely severe headache
- Nausea and vomiting
- Stiff neck
- Blurred or double vision
- Sensitivity to light
- A drooping eyelid
- Loss of consciousness
Symptoms of a brain aneurysm that has ruptured:
- Pain above and behind one eye
- A dilated pupil
- Change in vision or double vision
- Numbness of one side of the face
Resources that I found helpful:
- 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…