A personal story on aneurysm, aphasia, and grief

It’s taken me a long time to write this post. I generally write about happy things – mainly my happy places. But writing is therapy for me. So as difficult as this is, my mother’s story needs to be told. So many people are looking for help with aging parents and I was quite suddenly, thrown into this mix.

Often, when I’m writing a blog post, I talk into a recorder and tell a story – it sounds more conversational which is my style of writing. But in this case, I couldn’t do it. My voice kept breaking and Siri couldn’t interpret my words riddled with tears.

So here we go (deep breath)…

Imagine walking out your front door one day and unknowingly never being able to walk through that door and go home again. Never seeing your dog again. Never sleeping in your own bed. Never sitting in your backyard sipping a glass of wine.

This is what haunts me at night (when I let it)…

On November 3, 2017, my mom and I went shopping. We bought her new shoes, new pants, and had lunch at Nordstrom where she discovered her new favorite salad and exclaimed, “Let’s come back here tomorrow.”  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.

I had come from my home in California for a one week visit, when she came into my room early that Saturday morning and said, “Something’s wrong. I have the worst headache of my life.”

I knew those words. And I knew what they meant. I texted my brother who lives a mile away and he responded, “I’m on my way.”  We rushed to the hospital and within 90 minutes, I sat outside the CT scan room as the doctor said to me, “She’s got a brain bleed. We need to get her downtown.” Thirty minutes later, I was in the back of an ambulance with her making the trip downtown where they were more equipped to deal with…a brain aneurysm (the result of a new medication she was prescribed, but that’s another post).

The hardest thing in those first 120 minutes was seeing my mom go from being lucid and aware, and scared, to incoherent and unresponsive. I think back often to that exact moment, when I saw that change. That’s when life as I knew it changed. And I joined that group who would need help with aging parents.

Let me backtrack. My family is affectionately known by our friends as “The Cleavers.” We’re 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 committed to take care of my mom for the rest of her life. And as you’ll see, they’ve certainly gone above and beyond the role of sons.

My oldest brother had taken his annual sabbatical to Yellowstone, his happy place, to R&R and indulge in his hobby for amateur photography. Imagine having to make that phone call to tell him what happened. Fortunately for him, he was in a remote area so by the time we reached him, my mom had stabilized. But he was on the next flight home.

The ICU vigil was in full swing (sadly, we had been down this road before with my father). Panera became our best friend as I, my brothers and my sister-in-law, took turns sleeping on the awful plastic sofa next to her bed. There was NO WAY we were leaving her bedside at that point. We wanted to talk to every doctor, every resident, every nurse who entered her room. And so began…the journal.  A notebook where we kept detailed, overly detailed, notes for the next 90+ days. What medications she had, what the doctors said, what tests were administered and their results, and ultimately, what she ate, and funny enough, we documented her bodily functions. It’s as if we wanted to solve the puzzle and put her back together.

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. 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. I can’t even begin to explain how we pulled together as a family. 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.

Ten days in ICU led to 30 days at a rehab facility. Remember that I left home for a one week visit with a carry-on suitcase. Shout out to Target for my new wardrobe.

Fast forward…rehab (for her, not me) was great. She progressed. She was able to somewhat feed herself and was able to stand, with assistance. We thought we were on the way to recovery. I distinctly remember telling people, “Oh yeah, the doctors expect her to make close to a full recovery.” We hung our hope on the doctors’ use of the word “could.”

Here’s the funny thing about a brain injury complicated by cognitive impairment. The part of her brain that says, “I need to get up and go to the bathroom,” is still intact, yet the part of her brain that tells her legs how to walk isn’t. So she tries to stand up. Often. This is the woman who had two knee replacements and couldn’t sit still to heal because she had things to do – things that usually involved cleaning the house or cooking. That’s my mom. She never sat (sits) still.

Once she entered the rehab hospital, we knew we needed a break. None of us was getting a full night sleep. Terrified of a fall, we hired private nurses to stay with her at night, and we continued to rotate shifts among the four of us during the day. For 30 more days. Sidebar: I love to sleep. I mean I REALLY love to sleep. I had no idea until this happened how little sleep I can actually get by on. I remember 90 days after her aneurysm saying, “I just want to go to sleep one night without worrying.” (As we approach 120 days on this journey, I’m still waiting for that night.) My brothers essentially put their jobs on hold as we all put our lives on hold. At this point, we were in the Christmas season – it was anything but merry.

I would be remiss if I didn’t talk about my brothers and my sister-in-law and how we pulled together like I believe no other family ever has, to take care of my mother, and each other.

You honestly have no idea! We pulled 24/7 shifts, alternating sleeping on a mattress on her floor once she came home from rehab, to staying with her during the day and tending to her daily needs. I’ll spare you the details, but my brothers, without hesitation, took on new roles as caregivers, dressing her, bathing her and so much more. Again, it falls into the category of “things I never thought I’d talk to my brothers about.” I’m in awe of how my brothers have put aside any modesty and their own phobias to take care of my mom. And my sister-in-law, who has cared for my mother as if she was her own. I found a photo on my phone yesterday of my SIL in those early ICU days washing my mom’s face and it’s so bittersweet. I have truly learned the meaning of selfless. And patience.

Fast forward again to where we are today, almost 120 days post-aneurysm. She’s now living in a memory care facility where she can get full-time and intensive specialized care and therapy. We still hold out hope that she’ll be able to come home one day.

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.” My tentative book in progress is titled “Have you seen my mother naked?”, because, well, you know. If you could only see our 90+-day long text string about tending to my mother’s daily, and often, rather personal, needs.

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. At last count, 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.”
(pause)
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.

There are no real lessons here, except to take nothing for granted. One day we were out shopping. The next day she was fighting for her life. 

As we approach that 120th day, the doctors have said we have to give this type of injury at least six months. Just when we think we’ve hit a plateau, she’ll surprise us and have an incredibly lucid day. We know she’s still in there. So we hold onto hope.