When you've unloaded your life on the internet for fifteen years, it probably seems hypocritical to claim to be a "private person," but for me it's still true. Rarely does my blog touch on my personal life, my work, my family, or my offline friends. That's entirely by design, because there are some things I'd rather keep to myself. Not just for me, but out of respect for the privacy of everybody else connected to my life.
Long-time readers were probably surprised to find out that so many of my travels which have been documented here on Blogography were made with my mother, because I never mentioned her being with me at the time. The reason for this is long, complicated, and nobody's business... but... at the same time it really should be everybody's business. Partly because it may help others who are going through a similar trajectory, but mostly because there's a lot of inspiration to be found there.
For all the time we've spent together over the years, my mom was never given to talking much about her life before I came along. I know practically nothing about her years growing up, and I honestly don't know why that is. What little insight I have is from old photos I've run across or out-of-the-blue comments that would pop up. Once while we were out for breakfast I ordered my eggs over-medium instead of scrambled like I usually do. Mom took that as an opportunity to mention that when she first got married and was cooking breakfast for my dad, she'd throw out eggs with broken yolks because she didn't want him to think she was a bad cook.
And so it went for as long as I knew her.
When things didn't work out between my mom and dad, she moved to a neighboring city. I ended up moving there with her because I was attending college there at the time. After a year of starting a new life for herself she spent most of her time with her boyfriend and was rarely around, making her the perfect roommate.
I spent way too long trying to figure out what to do for a career, but eventually found my way to graphic design. Once that had been decided, I took a job offer with a brand new company that was starting up in San Diego. It was sent my way via an ex-girlfriend who was living there, and seemed like an opportunity I couldn't pass up. The opening was seven months away because offices were still being built, so I asked my mom if she wanted to take a trip before I left. She had accompanied me on work-trips around the US from time to time, but this was to be a grand vacation in Europe... visiting London, Edinburgh, and Paris. We went. We had a great time. And I was happy to have some terrific memories before leaving home.
Not long after returning, it came to light that her boyfriend was a heinous, abusive, shit-stain on all humanity. And my mom's world fell apart. I'd say this "man" was garbage, but that would be an insult to the bag of cat shit I just tossed in my trash can. I maintain to this day that prison was too good a punishment for the atrocities he committed, and consider anal warts to be a higher form of life than him on his best day.
My mom never fully recovered.
She blamed herself for not seeing what he was... blamed herself for not knowing what he was hiding... blamed herself for everything and anything because that's all she had left. On the day she got a phone call from her now-ex piece of crap demanding she come bail him out of jail, I knew that San Diego would have to wait. First I had to try and get her the help she needed. This involved attempting to carry her down the stairs of her apartment, which I was not capable of doing. I essentially ended up dragging her down the stairs as she was sobbing uncontrollably. She couldn't walk. She could barely breathe. Days later I saw how badly she was bruised because I was not strong enough. It was the first time I felt as if I had completely and utterly failed her as a son. It would not be the last.
Months later as she was slowly... so painfully slowly... recovering from the trauma that life had thrown at her, she asked me if we might go on another vacation together one day.
You also now know why she was never mentioned as I documented our travels on my blog.
I didn't want her disgusting pig of an ex to know anything about her or what she was doing, even though deep down I loved the idea that he would know she recovered from his abuse and managed to live a great life without him in it. She had crawled out of the wreckage, picked up the pieces, and did the best she could to carry on. Sure all the fantastic places we traveled had helped, but make no mistake that it was her strength, determination, and drive that were ultimately responsible.
This was not the life she had hoped for, but it would be good enough.
At least for a while.
A decade after our European vacation, her memory started failing her. She would chalk it up to having "senior moments," but after a while it was becoming a problem. She would write herself notes constantly. More notes than anybody could ever read. She'd go through a pack of Post-It's in a week (eventually she'd go through a pack in a day). Then, three months before we were to leave for Africa, I woke up and found her wandering around in a daze. She was so confused that I thought she might have had a stroke, and rushed her to the hospital. But it wasn't a stroke.
The specialist was not entirely sure what had happened to have caused the "permanent brain injury" which my mom was now dealing with. He didn't think it was Alzheimer's, but couldn't know for sure. Subsequent sleep studies found that she would stop breathing for dangerously long periods in the middle of the night. Her doctor felt that oxygen deprivation was most likely responsible for her brain trauma. He immediately started her on a CPAP machine, but the damage had been done.
There was no reversing what had happened, and her slide into dementia had begun.
And now it was my turn to have my life fall apart.
First thing I had to do was get a note from her doctor so I could cancel our trip to Africa and get a refund from the insurance company. "Why would you want to do that?" he asked me. Well... probably because her brain was incapable to making new memories and it would be a horribly confusing ordeal for her. But her doctor thought canceling would be a mistake. Since her older memories would be preserved for a while, he thought she would be able to go and still have a good time. Sure she would remember absolutely none of it, but that wouldn't stop her from having fun at the moment.
And so we went.
It was bizarre, tragic, and beautiful all at the same time. Every morning we'd wake up and she wouldn't know where we were or how we got there, but then she'd see an elephant wander by our tent (or whatever), remember that we had been planning a trip to Africa, put two-and-two together... and, surprise, we must be in Africa.
And, no, the irony of an animal that supposedly never forgets helping me come to terms with a mother who always forgets is not lost on me.
It's funny how things sometimes work out.
I am beyond grateful that we had taken that first trip to Europe, because that showed her she could have fun in life without her boyfriend in it... right before her boyfriend was carted off to prison.
I am even more grateful for her doctor encouraging me to take her to Africa despite her brain damage... because it showed me that her life was not done yet. Yes, things would continue to fall apart, but I didn't just writer her off after diagnosis like I probably would have if we hadn't gone to Africa.
Everything after returning home is a blur of heartbreak and tears as I struggled to figure out how to help my mom have the best life she could when life was throwing every possible obstacle in her path.
Eventually her apartment wasn't safe for her. Those same stairs I had dragged her down years before became a barrier to getting her in and out of the apartment. So I bought a home in the old neighborhood I grew up in where she could be in a familiar area (so that's why he bought a new home!). I had to install security cameras all over my home so I could keep an eye on her while I was at work (so that's why he has all those cameras!). My mom was scared and lonely when I wasn't there, so I decided to get some cats to keep her company (so that's why Jake and Jenny are there!). It goes on and on. Every day was a new challenge. But it's my mom and I love her, so what else was there to do?
I'm not going to sugar-coat it, dealing with dementia is a horrendous ordeal, and just when you think you have a handle on it, things get worse. They always get worse. And then there comes a point where you don't think that your life will ever be anything but worse.
After six months in my new place, my mom was declining badly. She was on a host of drugs to help her with the depression and confusion, but they sometimes only worsened what they were supposed to be helping. Mom would become angry for no reason. She'd scream at me because a son shouldn't be kidnapping his mother. She'd pound on windows to try and escape. She'd start crying and couldn't stop.
One day she complained of chest pains. Thinking she was having a heart attack I ran her to the ER. It wasn't a heart attack, it was constant stress generated by never-ending confusion. Her doctor was very concerned.
But not for my mom.
He was concerned for me.
"What are you doing? You can't take care of her like this." And he was right. My entire life had become about trying to keep my mom from going off the edge, but I didn't realize she had already fallen off. And I was falling with her. It was then I knew that she should have been put somewhere that could help her months ago, but I would never admit it to myself because admitting it would feel like I was giving up on her.
After weeks of searching, I found a place I could live with where she could live.
Driving her across the mountains to her new home was about the hardest thing I've ever had to do. Maybe it is the hardest, I don't know. All I do know is that it felt worse than any heartbreak I've ever had and I spent a lot of time after wanting to die.
But it was just a warm-up for what was to come.
When it comes to dementia, things always get worse, remember?
There is nothing... and I mean nothing... that can prepare you for that moment where your own mother doesn't recognize you. You can read all the books that exist on dementia... you can think you are prepared and be able to accept it when that day comes. But you're wrong.
If you want to know what that's like, there just aren't words to describe it. There is no pain... no suffering... that will cut you quite like it. This video might give you the smallest inkling of how it goes. The whole thing is worth watching, but you can fast forward to 23 minutes in if you want to see what it looks like when somebody has been completely and utterly destroyed...
And that was me.
Sitting in the parking lot of my mother's memory care facility trying not to die of a broken heart.
They say that when it comes to dementia you say goodbye twice, and that's absolutely true. I said goodby to my mom when everything that I was to her was gone. I said it again last night when she died. The first time was a lot harder because it was the one that matters. Relatively speaking, the second time was easier because it was just saying goodbye to the body of who my mom used to be.
And so now you know.
The reason my blog stopped on June 4th, 2016 is because I had to find a home for my mom. The reason it didn't really start up again until October 31st, 2016 is because that's how long it took for me to recover from it. You can fill in the blanks on all the entries after that where I'm having a bad day or feeling depressed or didn't feel like blogging.
Tomorrow's Bullet Sunday will be bullets talking about what I have learned in dealing with dementia. Which is almost nothing, but it still might help somebody out there who is going through the same thing. I don't think it will be published tomorrow, but when it is published, that's what it will be.
To my family and friends who have helped me so much over these past years... sometimes without even knowing it... thank you. I could not have made it through without you.
To my mom's doctors, nurses, and all the people who work at The Cottages Memory Care in Mill Creek... thank you. I cannot fathom how you manage to do what you do with such compassion and grace, and am more grateful to you than you will ever know.
And to Jake and Jenny, who gave me a reason to get up in the morning after my mom had moved out (and almost certainly kept me from killing myself on more than one occasion)... thank you too. I mean, I know you're just cats, but you're still far better humans than a lot of people I know.
And so... until whenever I start feeling a little more like myself, take care of yourself and each other.