As you may have noticed from my poem last week, the inexplicable mesh of sadness and complexity of dementia defies a solid way to explain. I have tried to explain it in cornbread chunks like explaining it with fishing similes and others. I have more like that coming down the meal production line (Andy Griffith, golf, others) and today is another one. This piece may be completely unhelpful to you is you are not a computer nerd like me, but I will try to make it accessible to all as best I can. These items are imperfect as describers, but they may resonate a little and fill in a piece or two of the puzzle for you….maybe. 🙂
- Nearly 10 years ago, mom experienced what is referred to as a stop error, a debug event, a memory dump or a similar name. Most, though, think of this event as the dreaded and somewhat overstated “Blue Screen of Death” (BSOD). Contrary to sound of its horrific name, this does not mean your computer IS dead…but for that moment it was rendered wounded and calling for help. Mom lost both of her parents (one to stroke and the other to a terrible combo of congestive heart failure and dementia) in a pretty short period of time and was really struggling emotionally. This is what many who care for a family member with dementia might refer to as a possible triggering event. Although I have heard dozens of cases where there was an event that exposed dementia, research is inconclusive as to attaching the word “cause” to this triggering event. It seems to be more of a rapid flash-aging of the brain which makes damage more apparent.
- Mom “recovered” after some time in an inpatient behavioral health facility. She returned to the largely happy, content and loving person she was before the BSOD. In computer terms, one could say she was returned to her “restore point” or “last known good configuration“, if you will. There was damage done, but it wasn’t apparent.
- When mom was finished with this hard time, we discussed her condition with her hospital staff who threw in the phrase “she has a mild form of dementia” as part of what caused her challenging season. This information was filed in our collective minds like an “information” notice in the event viewer of your computer software. These “information” notices are something to consider, but are likely not going to cause any issues any time soon and, frankly, in many cases, can be ignored. So we thought…
- Application Hangs are what is logged in the event viewer when there is a glitch…a program that tries to open and just sits there “clocking” with the ole hourglass or the ring flipping and/or spinning. It reminds me a little of the needle getting stuck on the record, but with no sound. Mom, for the next 7 or so years, began to experience more and more application hangs. She would forget that she had said something or tell us something twice in short order, but we just logged them as an error and went on. Things happen. Our hardware/software is getting a tad older. You know?!?!
- I need to insert the most obvious (chiche?) way repairing a computer reminds me of dementia: storage. There are two primary pieces of hardware in a computer that store data: The hard drive and the RAM (Random Access Memory). Think of a hard drive as being long-term file cabinet of storage/memories whereas RAM is more like a dry erase board connected to the front of the cabinet with super important, but not old information on it. When you first get dementia, your RAM is first thing that seems to struggle. You lose your car keys, you forget to pay a bill, and/or you forget where you parked. These are short-term, time sensitive issues. Your dry erase board gets smudged. Over time the problem spreads into the long term storage of your hard drive file cabinet. Much like a corrupt politician shreds evidence like crazy, the dementia-wounded brain shreds files and the file folders reducing the capacity to hold information. It mixes up files, locks a cabinet or two, staples some folders shut and does whatever else it can to reduce storage space to hold important, long-term memories.
- As time went on (hindsight is 20/20), I also noticed that when I would call mom, she would take longer to respond with an answer to questions than normal. She was thinking, it appears, trying to recall correct answers. It was like she had a DNS client event problem. She heard the words, but she couldn’t match up the words to what they meant. In a computer, the DNS (Domain Name Service …or System…or Server) converts/matches up IP addresses to websites and likewise (simplified). When it works right, when I type in my browser google.com this part of the software converts it to a strand of formatted numbers (the IP –Internet Protocol–Address). Or, similarly, when someone asks me a question, I reach in my brain and match experiences and things I have learned in a bunch of small parts, immediately, and come up with an answer. If I have no available points of reference, I have no/a wrong answer. I cannot convert the data from how I heard it to an appropriate response. The numbers are there, but my computer can’t make sense of them. The longer and longer you have dementia, the more of these data points are moved and/or missing. The thought can’t make it from Point A to Point B.
- Events are logged when the time and/or date is wrong in your computer. It has an internal system that checks and if it is wrong, it gets cranky. Wrong computer times/dates are also a security issue. Suffice it to say that bad things happen when the computer…and the patient can no longer tell the time. Part of most cognitive testing for Alzheimer’s includes drawing a clock to read the requested time and/or questions about what time or day it may be. Mom lost all sense of time (and place) a couple years ago. She remembered her birthday because it had a cute way of remembering it, but forgot the rest. If you asked her who the president or her congressman was today, she wouldn’t have any clue. (Hold back on jokes here…)
- As things got worse for mom, the data points became so disjointed that any question has led to a few different possible answers. Her hard drive, if you will, was so fragmented that she couldn’t compute much of anything. She needed defragmentation, but her system, sadly, couldn’t do it. When you defrag a old school hard drive, you move the chunks of data next to more chunks of data and free up space in the process. This is somewhat weak of an explanation since a computer that is fragmented will still work albeit slowly, but a fragmented mind ceases to work well enough to perform many activities of daily living. (Note: sleep, in a normally-functioning life, seems to sort of work like a defrag tool.)
- Anxiety caused by the troubling lack of being able to match information with how the information is used became extreme several months ago for mom. In a computer, when you click Control and Alt and Delete and the same time, it brings up a few options including the Task Manager. The Task Manager lets you shut off services and browser tabs that you want to that are hanging up. It also shows you what percentage of your computer’s computing power is being used by what is going on. When you have lots of windows open or, worse, when the computer is having problems (a virus), it is working itself to death. This is the experience of the early- to mid- stage patient. They are almost frantic searching for normalcy. They need stability with someone or something that they know…that they can process. The brain needs a resting state this way and performs terribly when it is in a 99-100% of resources being used mode, especially so the longer it lasts. This was last winter with mom if you want to look through the archives. She was trying to escape, she was pacing for hours and hours, she was gathering and hoarding and hiding stuff… She was desperate for a relaxed, understanding mind. And it was crushing to watch and try to help her through. No easy Task Manager to slow her down without meds.
- Using “Safe mode” is when you operate you reset your computer to the bare bones of things happening (processes functioning) so you can perform basic tasks and/or troubleshooting without interference. Mom spent some time at the end of the year last year in a behavioral health facility trying to achieve “safe mode” and get her meds straightened out. It is hard to diagnose a computer running helter skelter and it is hard to treat and diagnose problems in a patient who is over-exerted this way. Using an unrelated computer term, mom’s brain was being overclocked beyond her computer’s ability to keep cool and keep up with. Meds, therapy and probably damage caused by this time finally slowed her down to a manageable level.
- Critical errors in the event viewer detail when things go terribly wrong. If you unplug a working computer (perhaps right in the middle of doing an update) instead of going through the normal routine of shutting it down, it logs a critical kernel error. Mom was having all sorts of trouble “shutting down” correctly at bedtime. She was awake when she should be sleeping and likewise. This is called “sundowners” in dementia vernacular. This is terrible on a person just like it is on a computer.
- A computer crash, loosely speaking, is when it fails to work. The computer goes from standing proudly to crashing to the ground. Chronologically this is about the time that mom started falling (although she fell earlier too). Falling is terrible for any senior. I have written a dozen articles referring to how bad crashes are. 🙁 They took their toll on mom and her event viewer logged lots and lots of issues caused by these falls. They also caused her to be afraid to walk.
- Today mom, minus a cure, is waiting around for a piece of software or hardware failure that will shut her down for good. Software-wise, her brain is no longer doing an efficient job of handling normally automatic tasks. She is calm and not anxious, helped by her faith, her meds, and ironically the progression of the disease. Her brain is forgetting how to swallow and a host of other simple things that matter much more than remembering my name. She is happy and not stressed, so things could be worse. On the hardware side, her days can end because of things like infections caused by bed sores or UTIs, by pneumonia caused by not swallowing correctly, or by a host of other causes tied to body systems. And someday, perhaps soon, we will cross that bridge and she will be gone. Her data extracted the best we can into other formats (like my blog, pictures and sweet memories) and she will be buried, recycled back into the Earth. Ashes to ashes, dust to dust. 🙁
There are, of course, problems with these analogies and similes, but I hope they give you some of the picture of the progression of the disease. More could be said, more references drawn, but suffice it to say that until you experience it you will not fully get it. It is a terrible disease that needs to be cured soon! Until then we advocate, we serve, we hug, we sit with, we love, we sing to and we do whatever we can to keep our loved ones holding on. Some sweet day, when a cure is announced and a white Alzheimer’s Walk flower is proudly shown, our systems will be fixed. If not, when we get to heaven, our whole system will be replaced by one that will never fail, never have errors or warnings, and one that will hum His praises forevermore!
Update: Mom had a good weekend. My sis visited Saturday and said she was almost slap-happy in laughing, but never really said a word. I guess there are worse places to be. I hope someone isn’t slipping her some CBD oil without us noticing. What an adventure!