I moved to Alabama to take care of my mom eleven years ago last week after my step dad died. Then Hurricane Ivan hit. My mom was alone and scared. (Google Hurricane Ivan if you want to see the scope of the devastation.) She was very artistic and active and brilliant. Unfortunately she had to have hip surgery on both sides shortly after I arrived here from Bremerton, Washington. The same doctor who performed butchered her on the second one, leaving her in constant pain. She was allergic to most pain medications and I had to do a lot for her, but that was okay for me. I wasn’t the one in that pain. It was supposed to be temporary and then I would move back to the Pacific northwest.
In fact, about 5 years ago I moved back to the northwest but during the ten days after my arrival there I realized in my heart and mind something just didn’t feel right. I pack all my possessions in my truck again drove the 4+ days back to Alabama. When I there I could see changes I wouldn’t have otherwise, but had no idea the cause. One thing I knew was that my mom was sad since the death of my step dad although she’d do her best to hide it. She’d finally met a more than decent man after two huge mistakes. Actually, an amazing man, the loss of whom I attributed many of her lapses to. She missed him so. It was heartbreaking to see. He was a much better human, husband and dad than my biodad or my first step dad. Mom had finally found happiness and the loss of my step dad hit her hard. I initially thought she was suffering from his loss and falling into mini-depressions, something she was never, unlike me, prone to.
In the last two and a half years things started changing even more. Some of it I can only see in retrospect now, something that’s common when you see someone everyday, for many hours of each day. Mom had had some ‘physical events’ some very high fevers that the local medical establishment could never explain. I guess Medicare didn’t cover the expensive diagnostic tests she really needed. I took her to a neurologist and he said, ‘Oh, she’s just getting old. Don’t worry about it,” as he left to visit another patient and charge another buttload of money. Honestly, I’d like to track that guy down and beat him until his asshole is his collar. Doctors and their god complexes! At that point they could have started her on medication and therapy that would have let us know what was going on and slowed the progression from a disease, that in reality no one EVER comes back from. Sadly, that’s pretty much the state of medical care in most of Alabama, especially for the elderly. If you’re on Social Security the doctors want to get the patient in just so they can bill the government. While there may some good ones, they are few and far between, especially here, and I have found only one, sadly after the worst happened.
My mom had become a victim of Alzheimer’s. I can see the early indicators now but it wasn’t apparent that something besides age was the issue then. In the last year and half though she’d stopped doing things like her art projects, using her computer and attending art get-togethers with her friends, which she always loved. But she always had a good excuse from the hip pain to arthritis to exhaustion, and I usually bought it all, although I suspected she avoiding them for some reason. I just didn’t know exactly why. She knew something was wrong but did her best to hide it, and at her age and given what she was going through with pain, etc., it was tough to call her on it.
She started suffering from dementia. Many years ago she used to play our games, Space Quest, although she liked King’s Quest and Quest for Glory more than Space Quest, something I learned this summer while sorting through her possessions and seeing the greater wear on those game boxes compared to ours, Mark’s and mine. But she would never have told or admitted that to me in a million years because of her love and support.
I’ve been my mom’s sole caregiver through all this time. When the effects of Alzheimer’s became obvious it was far too late for treatment that might have slowed its progression and severity. I was rarely able to sleep. In those last few months I lost another lost 35 pounds and was a walking shell of myself. If I fell asleep for instance sitting at my desk when I thought she was finally asleep, something that was a constant struggle which she rarely did for more than 15 minutes at a time, I would wake up and my heart would be pounding in a way I can’t describe. I guess terror is the closest word since I was instantly wondering what she had done while I’d been asleep. How long had I been asleep? There are few things like waking up to the smell of something burning in your home. She decided in the middle of the night to cook a banana on our electric stove. She put it on a burner, turned the dial and walked away to do something else bizarre, totally forgetting the banana. There were 3am kitchen fires, not to mention floods when she would decide to put her bedding and other items in her bathroom sink, turn on the water and walk away. This is just a sample of what Alzheimer’s did to a vibrant woman much smarter than me. Eventually I had to remove all the dials on the stove and all the door knobs inside the house so she couldn’t get out when I wasn’t aware. It happened once in December of last year. It’s a miracle that was the only time.
The point to all this is that I was not able to be the person and partner Mark needed for the game design and writing, although we were able to put together the general framework for the game before things became bad with mom. Still, as design partners you must have day to day, sometimes even hour to hour communication. There are so many decisions and ideas that come up and need to be discussed. My mental state as I watched my mom go away, not to mention physical state from sleep deprivation prevented me from being there for Mark, and for Chris who along with our amazing friend, partner and senior programmer PCJ (that’s the name he likes) kept plugging away at making the game engine and utility programs better and better. Unfortunately, without someone like me using PCJ’s Narrative Editor, as an example, it’s sadly sitting awaiting use.
It’s hard to see what Alzheimer’s does to a person, especially the person who gave birth to you and just a couple of years ago was bright and sharp and funny.
Life is something you only learn about through experience, through living it. The hard way. People can give you advice but until you personally face the challenges and fears nothing helps or matters. And no one told any of us about what was coming our way. There are things one can in no way anticipate. Seeing what happened to my mom, talking to Mark and hearing what he has gone through, the gut wrenching reality of his concern about his wonderful wife Sandy, the love of his life, who I’ve known for almost as long as Mark and I have known each other, and what they have had to face aside from that, one can in no way anticipate, and unless you are superhuman you can not be prepared nor can you compartmentalize things so frightening and go about the business of fully creating a fun and funny game in such frames of mind. And disappointing the many, many people who have believed in us and backed us with no knowledge of what has been happening behind the scenes when these kinds of personal issues have been happening is just another weight and responsibility that is a personal disappointment to us as well as our backers, regardless of why. In fact, the weight of letting you, our incredible backers down with the delays and sliding release dates we hoped would be behind us now, the game we hoped you’d all be playing and enjoying, has only added to the burden because of the guilt we feel by having let all of you down so far, but as I hope you can understand, some things are much heavier than can be imagined and they can crush your heart, mind and soul. We are doing our best to recongeal and do what we promised.
My mom died recently. It was both incredibly sad and merciful as I watched her take her last breath, but she was so far gone from the person I’d known. Seeing her fading away farther and farther each day was agonizing. I’ve had to deal with that and all she left behind. In time, once I’ve been able to deal with all her final affairs and get the eff out of Alabama I can get back on track. Peace will come and I will be able to move back to the Pacific northwest, be closer to Mark and we can deal with the business of making a game as it should be done. It will take us some time to pick up steam. Mark still has family issues to deal with but hopefully, where I left him dealing with so much on his own, I can pick up some weight for him, to return the kindness he did me. We believe we can get back on track, that we can fully connect to the inner weirdness of people who gave you Space Quests and make SpaceVenture everything we hoped it could be and that you have been hoping for.
I have an idea as to hard to how hard it has been for Mark and for Chris. They have been nothing but incredibly supportive. I couldn’t be more grateful or fortunate. I couldn’t have better partners or friends.
Thank you all for your understanding and patience.
-Scott