And then there is Amanda

| Amanda O’Brien |

Even though it has been 10 days since my sister died, the scent of burnt sage still lingers in my nose. I would have imagined by now that it would have dissipated, but every time I inhale I get a whiff of smoke. It’s smoke mixed with other things, like the aroma of candles, incense and oils. I have literally flushed my nostrils with water to get rid of the smell but that didn’t work. Then I tried rubbing my favorite Le Labo oil underneath my nose but that didn’t wok either. Eventually, I stopped fighting it. The aroma stays with me and every inhale reminds me of what happened that night.

I never told you about my beautiful sister, Amanda. I could have easily lumped her into the series of blog posts about my mother, The Good, The Bad, and The Ugly. I thought about it. I thought about what your reaction would be if I told you what happened to my sister at the same time that my mother was experiencing health issues. “Oh, and by the way, as I am going through this Hell with my mom, did I mention my sister?” I wondered if you would believe me if I told you that my sister was diagnosed with a rare brain disease at the same time my mother was dying of COPD. And then I decided that it was too much for me to write about them simultaneously even though they were on a simultaneous path.

Amanda’s story is separate. I didn’t want to dilute her story by combining it with my mom’s story. I don’t think that is respectful to do because people shouldn’t be diminished like that. She isn’t a sidekick. I am holding and keeping Amanda’s past, present and future whole and wholly her own.

I can’t tell you what happened on the night Amanda died until you understand the past. We only have to go back four years to 2017. Four years ago, my older sister, the eldest of the family, started getting lost when she was driving. She’d lived in Santa Fe, New Mexico for more than 30 years and in that 30 years she had lived and worked in almost every corner of that city. She knew how to navigate it very well. The first time she got lost, she brushed it off. It happened again a few weeks later and she attributed it to external factors, like exhaustion. It’s hard to pinpoint how many times she needed to get lost in her hometown before she sought help. Regardless of how many times it occurred, there was a tipping point that scared her. Enough for her to know that something was wrong and she needed to get some answers. Her doctor ordered an MRI.

The first MRI in 2018 pointed to Progressive Supranuclear Palsy. When I first read the results, I rejected it outright, I thought that the doctor was incompetent. I mean, this sort of thing doesn’t happen in our family. I demanded a second opinion. The second MRI in 2018 pointed to Benson’s Syndrome. Two different neurologists came up with two different possibilities. Whatever she had was so rare that there simply wasn’t enough data about the disease to make a conclusive diagnosis. The neurologists did agree on two horrible things, whatever brain disease she had, it was progressive and worse, irreversible.

We have to go back a little farther. The demands of life and work coupled with significant geographical distance, made it difficult for regular visits. Although we spoke fairly frequently on the phone, I hadn’t seen Amanda since the summer of 2013 when she came to Connecticut with her boyfriend and daughter. My excitement at seeing them quickly turned to shock because within moments I realized that her boyfriend was blindly drunk and needed help getting into the car. I was praying that his over indulgence was “vacation mode excitement” or that he needed some “Dutch courage” because he was meeting Amanda’s family for the first time. My prayers went unanswered. The visit was nothing short of awful, my mom and I were stunned at the excessive amounts of beer and wine that he consumed from the time he woke up in the morning to the time he passed out at night. We tiptoed on eggshells the entire week, spoke in whispers and tried to stay calm. We felt like we were handling a ticking bomb and could not wait until he/they returned to Santa Fe.

In April of 2014, nine months after they visited us in Connecticut, Amanda came home from work to discover her boyfriend was non-responsive. He was wedged between the bed and the wall and had been dead for hours. She called me immediately and was incoherent and inconsolable and rightly so. Despite my numerous offers over the following days and weeks to come and visit her to provide emotional support, she angrily and adamantly refused. After the initial shock had worn off, she told me that she didn’t have time for a visit since she was running their small business by herself. But that wasn’t the whole truth, she didn’t want me in Santa Fe because she was hiding something else that she didn’t want me to know. Some things are just too personal to share.

From 2014 to 2017 Amanda went through a very dark period in her life. Her personality changed. Not only was she grieving about the loss of her boyfriend, she was thrust into taking over his part of their business that she knew nothing about. After a year or so of trying, the business folded. She pivoted and found a job, but lost it shortly thereafter. She was let go because she was making simple mathematical mistakes with closing up the cash register at the end of the day. It wasn’t that she wasn’t good with math, it was her disease beginning to emerge. It had been lurking insidiously in her brain and ever so slowly, destroying one brain cell at a time. She lost her ability to count.

For reasons of her own, she kept a lot hidden from me over those years. She didn’t tell me that she was getting lost, she didn’t tell me about the results of the first MRI. I finally found out through a phone call on a cold Sunday morning in February of 2018. She still hadn’t shared her diagnosis with me, but she didn’t have to. Something was wrong with the way she was talking. The best way to describe our conversation is to say that “she couldn’t find her words.” She and I were having our normal catch up conversation but this time her speech was stilted. She kept stopping mid sentence and saying “Um, what’s the word?” Or she would say “Wait a sec, I can’t think of the word.” After we ended the call with a promise to talk again soon, I was shaking with apprehension. I immediately called her friend, who I knew was an active presence in her life and when the call connected, he didn’t even say hello. His first words to me were “Sarah, I was about to call you. It’s time you know what’s going on.”

In April of 2018, I flew to Santa Fe and stayed for a long weekend to pack up my sister’s life. We spent the days going through all her possessions. We made three basic categories: Keep, Donate or Toss. We donated bags of clothes, household items, and furniture and threw away the equivalent of a month’s worth of garbage. We boxed up what was left and earmarked some for storage and some for shipment. Her friend adopted her two dogs.

One morning before I left, she was sitting on the edge of the bed and she started crying softly. I sat next to her and put my arm around her. After awhile, I turned her to face me so I could fully wrap both my arms around her and the crying grew and grew until she was sobbing. I held her until it subsided and she pulled away from me and looked me in the eyes and said “Sarah, I am so sorry.” Those five words had a thousand words in them. It was her acknowledging her illness. It was her acknowledging her fate. It was her acknowledging my role in the coming weeks, months and years. It was the bravest thing I have ever witnessed. A few minutes later I went into the bathroom, turned on the faucet and vomited.

After everything was sorted, I went home to Connecticut while she lingered behind in Santa Fe for a few weeks to say goodbye to her friends and wrap up the final loose ends of her life. She knew she wasn’t ever coming back.

On Mother’s Day of 2018, she arrived in Connecticut. She had a special badge that she wore around her neck that had her name, and my name and phone number and address. She was placed in the excellent care of flight attendants who chaperoned her from Albuquerque to New York where my husband met her at the gate. It was one of the longest days of my life.

She moved in with our mother in 2018 and things were stable. I knew that we were living on borrowed time and that every passing day would snuff out a little more of her light, so I did as much as I could with her. Her brain disease progressed and eventually her condition deteriorated to the point where I hired a full-time care giver who moved in to take care of her. Having them stable was always the goal and with the exception of a few inflection points over the three years, I kept them stable. They were warm, and fed, and bathed and tucked in at night and had 24/7 care.

In March of 2021, our mother started waning. She fell once and thankfully nothing was broken, but we decided that she would be safest in the same ground floor bedroom as Amanda. We set up another bed and they shared the bedroom. We’d installed security cameras in various places of the house, one of them was in their bedroom. Occasionally, I would open the camera app on my phone and watch and listen in on their morning chatter. One day, I caught them just as they were both waking up and I heard my mother say to Amanda “Good morning, my darling.” My mom’s dementia was highly advanced at that time and Amanda’s cognitive state was so severe that she could not communicate anymore. It is one of those bittersweet memories that I cling to.

After my mother died in April, and it was just Amanda and the care giver at home, many of my friends asked me if Amanda had enough presence of mind that she knew our mom had died. My answer was always the same, “No, Amanda is too far gone.” In hindsight, I believe I was wrong about that. Whatever energy existed in the home when my mom was alive created sustainability. Even though a normal conversation couldn’t take place anymore, the nonsensical prattle was their connection to each other. They shared every meal, sat with each other on the sofa and watched television shows, and shared a bedroom. I know what you are thinking, me too. I have heard the stories of couples who die within six months of each other. It doesn’t have to be a man and wife, or life long partners. Any couple who counted on each other for companionship and loved each other as much as my mother and sister loved each other counts as a couple.

No one will ever know what was going though Amanda’s mind after mom died, she couldn’t communicate. I have to believe that there was a part of her that sensed that her mother’s energy was gone, there is no other explanation for why she passed away shortly after. But then again, there is so little information on people with her diagnosis and perhaps the disease claimed her in the end. It will be a mystery.

In August, Amanda’s health deteriorated to the point where the care giver could not provide the best level of care, and she was admitted to hospital. She stabilized to the point where she was just days away from being transported to a skilled nursing facility, but fate intervened. She developed other medical complications while in hospital that became life threatening. We moved quickly and she started in-home hospice care. And now I can tell you about the burnt sage…the night Amanda died.

I am not going to tell you in this blog post. I want to write her obituary first.