below is mostly jibberish i do not encourage anyone to read but I also won't delete it.
i monitored her habits for a few days and saw a number of things that I thought were fixable and would produce immediate change. I cut caffeine from her diet (was causing gastric upset as her stomach was producing acids with no food to break down, caffeine when consumed empty stomach does that and she was drinking 9-10 diet pepsi's a day) ((the caffeine was also the likely reason I heard her get up to use the bathroom or go downstairs and mull about 12 times a night and was right. most of the time she sleeps soundly now)) and dramatically increased her protein intake from maybe 20 grams daily (at most) to roughly 90-110 average. I also found a music station she really really likes and this calms her down, before she would just sit in whatever room she was in alone and not move or do anything sometimes for hours at a time. I couldn't take that (remember I kind of fell into their laps so for a while I was very uneasy about having anything to say about literally anything, then my antagonistic helpful problem solving tinkering and overly confident nature took over) and when the music was introduced she responded rather dramatically. in fact she's lying in bed listening to it now down the hall, it's an easy listening station I found. She absolutely loves it. Anyway I also began cooking with coconut oil and i pour a bit of it into her muscle milk shake in the morning each and every single day around 7:30 am. She tends to be very finicky and has ulcerative collitis in her background and I tend to have a hard time getting her to eat so the shake has been a cornerstone for months now and mike and I have been pleased.
i've watched her gain enough strength that she can walk up and down a flight of stairs touching the rail for balance (just rebuilt her lower stabilizers mostly, it was a confidence issue rather than strength) and about 2 weeks ago I asked her to read for mike and I over at history park to see if she could/would do it and she did! two full paragraphs about an old fire station and it's history. she performed very well having no difficulty enunciating multisyllabic words but seemed not to grasp the idea of what she was reading. she couldn't follow what she was reading though technically she was reading it but that's improvable. Mike didn't think she'd ever read again, says she hasn't read anything in over two years and he was FLOORED. (I got the idea to spring it on her while we were out from the guy who runs the sarah care she goes to weekdays 4 days a week. he told me a big part of her form of dementia is a constant power struggle and one of the things sarah care provides is a way to get them out of the house where they feel super powerful and bring them someplace where they can be managed easier. I put that concept together with believing she could read if she put herself to it and knowing in the past she's stubborn about doing anything she doesn't want to do ((and technically all she ever wants to do is sit and eat vanilla ice cream and waste away)) so I told Mike I thought my idea would work he went for it and it did work.
ugh not sure where I was...anyway so those improvements to her sleeping, eating, motility, being able to read and focus enough to concentrate on one thing, these things are huge (not sure you have any medical experience no disrespect intended) and we saw a huge turnaround from the brink of going to a home (really) to staying home for the foreseeable future and possibly having a spotchy memory but overall no worse for wear.
that's how things seemed anyway, then about 2 weeks ago she started getting up every hour for no reason, sometimes to piss sometimes to wander downstairs so we watch tv together until she gets tired and tries to go to sleep again, this repeats over and over and I believe in a 6 day period I never saw her sleep more than an hour straight. as you can imagine this snowballed into her losing a lot of cognitive function, she's slowed way down and can't hold a conversation or even follow a sentence. on top of this she's getting frustrated all the time and began swearing here and there (very out of character) and so she (of course) stopped eating almost entirely. my shakes have been the only constant this entire time (of my being here) as I found a vanilla shake sweet enough it reminds her of the ice cream she craves all the time and she enjoys drinking it. other than that, for two weeks now she just won't eat unless it's ice cream. you can't force her to, you can't negotiate or reason with her so mike and I have been brainstorming and trouble shooting every day and came up with nothing. we aren't doctors and her doctors treat her like she's already dead so we are basically on our own and it's very frustrating bob, it's very frustrating to want to help someone you care very much about and you aren't able to do anything past a certain point and that point just ain't enough...i mean i am falling short here, i know her dementia isn't my fault but i thought i had it beaten or at least on the run but throughout the last 8-10 months i've watched her do this a lot, it's like the disease has a mind of it's own and fights back or something. mike and mary got into an argument this morning about today being easter and not thanksgiving and it was heart breaking to hear her get frustrated and furious that mike woulnd't listen to her about KNOWING TODAY IS THANKSGIVING and why doesn't he believe her? she was in tears for a while about it and from my perspective I haven't heard or seen anything weird on this level in over two solid months. you'd be upset too bob, i guarantee it. i won't give up on her or mike as they didn't give up on me but i swear on my life this disease is nothing like a person expects it to be. it's a cruel punishment for a wonderful woman and her wonderful amazing husband, too cruel really.
my theory is that mary's ulcerative colitis is making problems for her and the upset stomach and pain is causing her to avoid solid foods thus she is eating ice cream late night because she's hungry and the resulting spike in blood glucose is making it impossible for her to get to and stay asleep. taking her to urgent care in the am and I want her pcp to review her status, meds, and what he thinks we should do and to run tests looking for the colitis etc. other than that i have no clue where to go from here and that's probably going to happen no matter what so i guess I might as well get used to what's coming now and try to get ready for it. it's not even mary I am super worried about, it's mike. he's got great genes and his dad and grandfather lived to be in their 90's but to be totally honest I can't see that man living 15 years without mary, there's absolutely no way. i was floored with the compassion and patience that he showed me and when I saw possible areas in mary I could improve I went after them 110% because i know anything that helps her helps him big time. i have been working my butt off for months now constantly cooking cleaning reading researching and monitoring so that mike could ease the load a bit and it's still way too much for him to handle. if she goes he won't be long at all which means time has incalculable value at this point, if I had to work twice as hard as I am now for months to give the two of them even one day longer together I wouldn't think twice. they are good people and I am not and probably never will be and in my heart I know what I am doing is right so I don't need validation or praise but I do need help, i can't handle seeing mary go downhill despite everything i can see being optimal and i can't keep seeing the look of just utter emotional and physical exhaustion on mike's face when he's not deliberately hiding it, fuck growing old it's the most horrifying experience ever. and to think, we are dealing with two well cared for and healthy geniuses with a lot of resources to spare and they still barely have enough money to live on I mean THAT'S WHAT WE WORK HARD ALL OUR LIVES FOR? JUST TO BARELY SURVIVE WHAT THE FUCK IS THAT??? Life is pointless, utterly hopeless and pointless i mean what difference is anytihng we do going to make? i wish i knew what to do.
realtalk, do these demented old people you live with have any idea what you're doing there?
lol sorry guys but it's a tough world out there, I am not being handed money anywhere I am creating opportunities for mySelf and I am proud of what I have accomplished. also bob the guy using the enclave now has been there barely a week, the hobo's have a network (they ALL have cell phones and even I don't have a fucking phone) and basically when the cops take whoever is there away and clean up they come within 1-2 hours and setup camp again. there was a girl assaulted a couple weeks back and my clients admin came out to her car to find the woman unconscious and bleeding from multiple lacerations as the guys there had beaten her and left her in the parking lot. sorry but my cup does not runneth over with sympathy here though I do have compassion and quite frankly I literally saved a hobo thousands of dollars lifetime and probably friends made teaching them the cool bic refill trick so whatever. I know you and tine are razzing me (I know because I just deleted a 5 pager whining about how unfair you are both being=trolled to the fullest) and I'm on the tired side so whatev. I do good work and help good people and have been working steady a while now I don't see how the same people who looked down on ah fuck me you sickos literally know EXACTLY how to get me going. literally down to a science it's like you have my inner emotional complex blueprinted or something. bright minds indeed, extremely bright actually.
also why are you still doing the capital s in self
he isn't really making hand puppets to synth pop music
wasn't sure what to expect and that was interesting. not sure how you came across that but can I ask you something? and this is not the question I want to ask you via pm but why can't we both forgive our mothers? I mean scooter and I and it's fairly obvious he and I both want desperately to hug and be hugged by mom and feel the love and warmth we miss so badly but we each hate our mothers for personal reasons, I think today I came closer than ever to actually forgiving my mother for squandering the only shot I will ever have at living a normal life despite telling me for years I was always the most important thing to her and the words just cutting my heart to shreds as I hear them knowing her actions tell a very different story. i have several friends who have 1-2 kids and did so young and they all sacrificed unbelievably to stay together so that their kids would have mom and dad and a normal, healthy upbringing and if i had really been put first she would have stayed with my father or left the drunk when she realized he was worthless and found someone else but she went to college instead...he i was isolated and afraid of the world, not eating for days at a time and hopelessly disconnected and in need of a male role model, so she bought me a nintendo and lied to me and went to college instead. I have not forgiven her yet, but every day I work on myself and cry a little bit just to remind myself it's real, the pain is real and the fact that we are running out of time alive together and shouldn't waste it harboring grudges is also real and in fact our time is the most valuable thing we will ever own, squandering it on bad blood was how my father spent his life and wasted his time and he told me with tears streamin gdown his face how sorry he was and he wished he could take it back. i will not become that man, but the memories are all there man, it's fucking hard. life is too real all the time, i never get a break and more and more have come to appreciate that people like Tine have honed escaping reality in a healthy way into a hard science as being properly entertained has tremendous intrinsic value to anyone capable of perceiving value imo. I just can't let so many things go right now...but it's now or i may never get another now...i love my mom to death and miss her dearly. if scooter was honest with himSelf for a moment he would admit the same thing and I have no idea the multitude of reasons he hates his mother as well but I am sure they are as real to him as mine are to me and ultimately just as petty and a waste of valuable time.
damnit i keep hearing "i need you mom" in that synth pop tone just over and over and am reliving childhood memories (the good ones) and fuck i miss her so much. thank you dave, i think that helped quite a bit really. time to grow the fuck up and be the bigger person, be my own role model and hopefully someday be someone else's.
cause i'm picturing them just terrified wondering when help will arrive
that is literally what life is like for both of them. moments of terror, hours of boredom that are still terrifying yet slightly less so because I am out (what do you imagine I do, am I stealing meds and jewelry and pawning them or am I out holding up liquor stores high on meth it's your fantasy) but while I am away I have a tweeker on payroll who sits in the room with them and the three of them just trade uneasy glances and the first person to go to the bathroom usually breaks out running when they hit the hallway i mean come on bro get real with your 408fantasy's
why can't we both forgive our mothers? I mean scooter and I and it's fairly obvious he and I both want desperately to hug and be hugged by mom and feel the love and warmth we miss so badly but we each hate our mothers for personal reasons
i was isolated and afraid of the world, not eating for days at a time and hopelessly disconnected and in need of a male role model, so she bought me a nintendo and lied to me and went to college instead. I have not forgiven her yet
i love my mom to death and miss her dearly. if scooter was honest with himSelf for a moment he would admit the same thing and I have no idea the multitude of reasons he hates his mother as well but I am sure they are as real to him as mine are to me and ultimately just as petty and a waste of valuable time.
I swear on my life after this post I will never post on my forum again until he's out of here. Or if you want his entertainment, that's also fine.
This is fucking intolerable insanity.
I'm going to put you down myself, you fucking screaming deranged imbecile.
I'm not you. You are never going to be as linked as you are when you are the polar opposite of everything I have done and stood for and been a living, personal example of. THE LITERAL POLAR OPPOSITE. My murdered siblings are not "petty". Your screaming insanity ("my emotional feelings were hurt, life is so real sometimes") isn't petty. You're just fucking batshit.
You're so insane you can't recall things you've read. Your mind is just porous. You need to put yourself down.
I swear on my life after this post I will never post on my forum again until he's out of here. Or if you want his entertainment, that's also fine.
This is fucking intolerable insanity.
I'm going to put you down myself, you fucking screaming deranged imbecile.
I'm not you. You are never going to be as linked as you are when you are the polar opposite of everything I have done and stood for and been a living, personal example of. THE LITERAL POLAR OPPOSITE. My murdered siblings are not "petty". Your screaming insanity ("my emotional feelings were hurt, life is so real sometimes") isn't petty. You're just fucking batshit.
You're so insane you can't recall things you've read. Your mind is just porous. You need to put yourself down.
can you edit your post and add a picture of an asian chick before you leave
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