It was very strange as I slowly peeled myself away from social media. It wasn't as if one day I decided to stop creating my world set by the algorithms of Facebook and Twitter. I found myself contemplating the efficacy of my words. Were my words really changing the hearts of people who read them? I would write a post and then ask myself, "Is the post really going to make a difference in this world, today?" Most of the time I found myself saying, no. So begun my disengagement with social media.
But in order to be fair and honest, I will have to admit I had a little push from the Universe.
Back in 2016, I had just published Broken Girl and was ready to put my career in high-gear. Broken Girl was like nothing I had published before. It was a dark and gritty book. It was the one book that took the most out of me writing it, and yet, I believe it is my best work to date.
Around that time my aunt contacted me, her health was starting to decline and she asked for my help. She was 83 years old. She never married and didn't have any children. It was just her and her dog as she was slipping into the mild to moderate stage of Dementia. Now, if I knew then what I know now, there is a part of me that wonders if I would have taken such a massive role in her life. But, the truth is, she didn't have anyone else. Too many bridges burned, and all the people she called friends had all transcended before her. My aunt needed someone and I was the next in line.
Days sailed by, my career hobbled on, and the more dependent she became on me, the less time I had to spend working on my writing career. It was hard to log into Facebook and write positive posts blooming with inspirational words when I was drowning in a very hard, very lonely, and at times an overwhelming resentment-filled mental state of mind.
I had my close friends and family to lean on, but when it came to logging into Facebook and searching for the virtual pats on the back or the warm and fuzzy love of swelling hearts or tear-filled emojis it fell pretty flat for me. Truthfully, I didn't want to be another broken voice in the sea of brokenness on Facebook. Quite frankly, I couldn't find enough gumption to post any words of inspiration while I was submerged in the anger and frustration of having my life hijacked by my aunt's illness. So, I posted sporadically until I pretty much stopped posting all together.
At first, it was hard disconnecting from something that had become an addiction to me. Social media was my drug and the "thumbs-up" and comments became my hit. Facebook did exactly what it was designed to do, keep me coming back for more. Becoming addicted to social media was insidious, and fighting the addiction had become the uphill battle with my self-confidence.
I watched the writing world roll on without me. The fear of becoming irrelevant was real. Seeing my fellow authors publish and shine in the light of productivity was excruciating. Don't get me wrong, I wanted them to succeed. I loved these very talented and creative people. Yet, seeing them keep publishing and producing, signings and sales made me long for a different path. They were moving on and I was stuck in repetitive stories of yester-year and trauma.
Dementia is a bitch. It slowly steals the victims memory in the most cruel way. But it doesn't just take away memories, it confuses, and makes its victim scared. It tricks the mind into not eating, obliterates short-term memory and eventually riddles its host with paranoia and fear. So as my aunt worsened, I had to step into her life and take over more and more of her daily needs. Essentially, her life became mine.
While I hoped the Meta-verse of Facebook missed me, it didn't. The personal vibe of Facebook was fickle, if I didn't interact with people, I simply got lost in the shuffling algorithm and irrelevancy became my new normal. It was like I fell off the face of the earth and nobody noticed. Book sales dried up and the people who validated me months early stopped.
Suddenly, I found myself wondering if I'd ever publish again. I kept writing when I could steal some time, and find the mental strength. In the last handful of years I finished a couple of manuscripts and tucked them away in folders on my computer. However, the thought of putting another book out became almost impossible. Self-doubt, the impossible pulse of judgment and the ever-growing cancel culture on social media had me wondering if people would accept any of the future books I would publish.
Then cue a world wide pandemic. My aunt survived eleven months of the new order of things. She continued to decline, falling and emergency room visits, arguments of who came to see her, the "good, sweet Gretchen" or the "terrible, ugly Gretchen." Her ability to recall was failing drastically, and I was worried on how I was going to get this very proud, independent woman to leave her house for a different normal. I promised myself that if she fell again, I was going to have to put her into a home and health care facility, basically a cold, small room in a house shared with others suffering from Dementia. I harbored a lot of guilt because I promised her that I would do everything in my power to keep her in her home.
Truthfully, I wish I never promised anything of the sort. It's easy to come up with answers to promises when you didn't make them. Easy to write-off a woman who treated strangers better than her own flesh and blood. But I couldn't. I am not wired that way. I can't walk away from someone who needs me. I will exhaust all options, and do what I can to help, even if it was stripping every little morsel of peace from who I was. I wasn't mentally prepared for the amount of bandwidth she took.
I felt weak minded, I felt like an impostor who, just months before told people to always seek love in the midst of hate. Truth is, I was filling with hate and anger. I was burned out and losing who I was. Then in December of 2020 I found my aunt on the floor, she had fallen again. This time she cracked her ribs. The world was in the deep throws of the Covid19 and my aunt had to go to the hospital, alone. I couldn't go with her. For the first time, she wouldn't have her advocate with her.
A couple weeks went by, her mental state was deteriorating while trying to recuperate in the hospital. They said she was stable enough to go to a SNF, (Skilled Nursing Facility), the only problem, there weren't any beds available in the whole state of California. I did my research, looking for assisted living facilities, hoping that she'd be okay going from a 3 bedroom, 2 bath house where she lived alone, to a shared room in someone else's house with perfect strangers. It was depressing to see what places she could afford to go. This was going to be the place she'd finish out her life, and most of them were not what she was accustom to, living alone.
A couple days later, the sky opened up and the social worker called me--they have a bed in a SNF a couple hours away. I agreed to send her there. As long as she was safe, I could keep looking for a place to move her into. I never told her that she wouldn't be going back to her home. She had lived alone for most of her life. Just auntie and her animals.
When the mind is struggling to recall the past, you are given permission to tell little white lies. I kept telling her she'd be home soon. It wouldn't be long before she was reunited with her dog, Cinnamon. My husband and I went up to see her, took her pup and showed her through the window that we were keeping her dog safe.
Well, all hell broke loose. She wasn't in the SNF for very long before I started getting recorded phone calls about the cases of Covid19 in the facility. The calls would tell me the amount of patients and workers who had the virus. Every day the numbers rose on the recorded call. "5 patients and 6 employees have tested positive for Covid19." It was so fast that I didn't even have time to react. Then, a call came in from the facility, I answered expecting to hear the recorded voice tell me how many more cases they had, but instead it was a real person, she was calling to tell me that my aunt had tested positive for the virus. My heart dropped. I failed her. I wasn't able to get her out of there in time.
For most of her life, my aunt was a heavy smoker. She did quit twenty years ago, but her addiction had made its mark, it stole her ability to breathe on her own. She had COPD, and in the last ten years of her life, she was on oxygen 24/7. Now my fears were realized, she tested positive for Covid19.
It was so hard, the guilt was almost unbearable. She was two hours away from me and I spent hours back and forth on the phone. I tried to talk to her, talk to the doctors, figure out how to make her comfortable, while fighting Covid19 with COPD amidst the cruelty of Dementia. They'd tell me she was doing well and sent her back to the SNF, then they'd call again and tell me she wasn't doing okay and that they took her back to the hospital. She was stable one minute and acute the next.
On January 18th, 2021, she succumbed to the virus, less than three weeks in the facility. I was able to talk to her over the phone. Even though she was unconscious, even though she was never going to wake up again, I needed to tell her that I loved her and that she won't have to suffer any longer. She died that evening with no family around her, just the nurse who I spoke to who said she stayed with my aunt until she took her last breath. It's strange when people say, you come into this world alone, and you leave the same way. For my aunt, it was literally true.
It's been over a year since she died. I still haven't really dealt with the trauma of taking care of someone with Dementia. And even though Covid19 took her sooner than Dementia, I will say, I believe Dementia would have been a much more painful way for her to transcend this life. She was a prideful woman who was extremely intelligent, and her mind had slipped away.
There are things I wish I would have told her. Stories I wish weren't lost in the abyss of nothingness, the black hole of Dementia. I wish family relationships could have been mended for the people left behind.
Even sixteen months later, I'm still trying to figure out my place in this world; still waiting for the other shoe to drop. Every once in a while I start looking at how to get my groove back in the book world. Most days, I tell myself, it has sailed on. I keep the hope that one day, when that ship comes back around there will be room on it for me and my stories.
With Love and Compassion,
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