My Perfect Demented Lifestyle
Note:
* This only applies to me and my exactly type of dementia. This is broad enough to apply to many but it is no guarantee for every single case.
* This is my idea of perfection. Granted I only have my grandmother to use as first-hand experience what *not* to do, I do think this is perfection for me simply because each day takes me as far as I can go on things and no farther. More, my "day" is centered around someone with no job, memory, minimal cognitive and motor skills. The big picture reason however is simply that I have surmised that with each downward swing, we get a little worse off because in many cases, we just don't come back all the way. Sooner or later all these little instances of "not coming back all the way" tend to pile up and I think it is at that point that we are looking closer at the end of the road than the beginning. It is also my assumption that in many cases, these downward swings have been preceded by some semi-traumatic event. Thus it makes sense if you can limit the traumatic and stressful events in your daily life, you might avoid more of the downward swings and retain yourself for a longer period within the MCI and maybe even extending the length of the MCI itself.
So roll all that up, smoke it and what do you get? Well I didn't do hardly any of this on purpose; it was in fact happy coincidence that the weird things I worked on over the years ended up being a boon now that I am dealing with dementia. But the fact that it was not planned in no way invalidates the results which I state again, for me are perfect.
That said kids, if your dementia or that of one you love matches mine in a similar enough manner, perhaps these things can help your situation as well.
My Lifestyle:
My wife is my caregiver, fox-hole buddy and so much more. She is living through this with me and realizing that stress of ANY kind was one of the big enemies, she has helped keep my days as stress-free as possible by understanding the toll that waiters and even driving in some parts of Las Vegas (her driving, me just surviving) or even simply answering the door can be. We have a medical power of attorney set up where on almost all doctor visits, she does my talking for me.
More, knowing what crowds and such do to me, I avoid going to the mall or other crowded place for instance.
Our home is my refuge.
I would imagine every dementia sufferer has something like a "safe room" or place or part of the house they can go to decompress with no distractions. For some it might be a back room, some it might simply be an easy chair they can put on headphones, shut their eyes and drift away. For me, this is the whole house. When things get bad out in public, all I can think of is getting back to here.
I mentioned somewhere that I can push myself as far as I want or feel comfortable doing. Part of that comes of three activities that consume most days:
1. My magic garden. Not a farmer or having any real connection to the soil before, since legalization and finding pot helps my dementia, I have taken up growing it which I do in a variety of ways and methods. I find I have maybe a knack for some parts of this but also that I enjoy every phase of it. First it happens at my speed (the speed of a growing weed) which is good. And I feel good when using my own medicine I made with my own two hands. Working on this is very therapeutic.
1a. I live in a recreationally legal state. What this allows is my use of cannabis when, where and how I need it medically. That means I can consistently get Ringos Gift sap, an 18:1 CBD:THC concentrate that does wonders for my fogs and other dementia symptoms. Also, I can get or grow classic cannabis for day to day use. This fixes my lack of appetite. Had a gastric bypass years ago and haven't really felt hungry since 2005. Now with LBD its hard to get interested mentally in food of any kind. Ask Randy. Pot helps. Finally, I am able to use various forms of this for sleep and for low-grade pain, leaving any opiates for when things are bad. But a big chunk of the stuff most are doing pharmaceutically, I am doing this way, with my neurologists blessing. He says I am doing as well with cannabis as I could have expected to from the usual suspects (aricept, et al) with none of the nasty side effects so....its like go with god. And I will not lie, doing crazy without cannabis would be miserable; this way it is tolerable. I know my born-again son thinks I am the antichrist but right now I gotta do whats right for me. This stuff helps so much with dementia that I wish I could give a whole ward of hard-case dementia patients this 18:1 CBD preparation. I firmly believe magic would (seem to) happen. My wife says it gives her more of "me" for a while.
2. Video games. Maybe its exploring a missed childhood since I had little time or interest in such things as a kid and even though I worked for game software companies I never had time for such stuff. Now however, thanks to emulation and some other tech tricks I learned over the years, I now have literally every game published for Nintendo, Sega, Super NES, etc. Everything that ran on a Gameboy, Famicom/Super Famicom machines, I have it to play and mostly on a hand-held gaming device the size and profile of a Sony PSP. In total more than 6000 unique games so there is always something I can play w/o it being too hard or too simple.
amazon.com/Handheld-Emulato...
Example system
More than that though there is a batch of games out in the last five years or so for higher-end consoles that had big open worlds (worlds you can explore and "live" in) and to make these worlds work, the game companies had to put some or alot of work into the AI that drives these worlds we can walk around in. AI to keep time working right, AI to keep the flocks of birds flying right or the AI that controls the ocean so when you go swimming you are among many living and moving fish, plankton, etc. What this means for me is a world I can run around in, drive in (can't do it now), swim in (ditto), go rock or tower climbing (can do no longer IRL) etc. I can do all these activities and it feels really therapeutic. These kinds of games also meet the criteria that demands I can always do things that are at the max of what I am capable of on any given day. What that means is, on a good day, I might go spelunking in a submerged cave looking for gold whereas on a bad day, I am contend just walking around the fields picking flowers or swimming in the bay.
3. Watching video or "shows". First, demented folks tend to have crappy memories which means things with complicated plots are either totally confusing or totally boring to us. On the other hand, we can watch reruns of a favorite series over and over again because the show itself is good (you liked it before), I can't recall enough of any given episode plot so every show has new twists and surprise endings for me. However since this is a show I know well, I need less of my memory to understand what was going on. So on a set-top box system I put together long ago I can watch any episode of Law and Order, 24, Star Trek (any generation), and many more, all stored on a server in our house, all commercials edited out so there are no commercial interruptions to make me lose the plot. Having such a system available for any TV in the house, I can stay entertained, or at least as much as I am able to be. As it was, I came up with this system of storing digitized media on servers in my back office that would stream any title to any location on our network, I did this when my wife first because permanently disabled and I was working insane hours. Over the years we improved this and collected everything we watched, TV sans commercials. Action, Adventure, Comedy, Classics, Documentaries, Drama, Fantasy, Family, Heroes, Horror, Scifi, Thrillers, War, Westerns and more, all accessible via a simple remote control app on my cell phone. 8 Terabytes total storage used.
Now as the dementia progresses, full movies are too much for me to process but I still love The Matrix et al so I decided to create movies just for me: I used a video editor and edited the best bits of the Matrix, Avengers, Enter The Dragon, and 18 more into a single 90-minute flick, just for folks like me...
Finally, reading material. Sometimes the other stuff just isn't what my brain wants or needs and so I turn to reading. To be ready for any state of mind I have some 40,000 ebooks on all manner of things but also have every issue of Spiderman, Fantastic Four, Avengers, Batman, Xmen and maybe 2 dozen more titles on tap. If I am up I can read something with meat on the bone; when not, I have comic books and Japanese manga from decades of collecting.
Something for every state of mind, every level of capability so I can take my day as far as I can and as far as I want.
So this is the quiet, chilled, no-stress environment I have set up and it works great for me.
Peace
Jeff
* LIttle of this was planned really; much is simply happenstance that things wound up being almost exactly how I needed them.
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