How to organize myself around a disorganized LO?

Quilting brings calm

Zach … a demented person went  to a doctor appointment by herself on a bus?   Do you have any idea what happened at the doctors office?   My mom can  put on an act like a professional actor at the doctor’s office.  But she can’t remember  what was discussed 5  minutes later. Without me there to tell the doctor the truth, my mom wouldn’t get the care she needs.  

Write the doctor a letter- drop it off or email it or sign up as her for their patient portal.  Tell the doctor your concerns and start working with them.   Your mom is operating on the level of a small child.  Would you send a small child on the bus to a doctor appointment by themselves?

It appears to me that you are in denial.  None of the various anecdotes that you’ve included in your posts describe someone that should be left alone at all.  She actually sounds as if she needs 24/7 supervision from someone well versed  in taking care of a dementia  patient. I think you are indeed lucky she hasn’t burned down the house, flooded the bathroom,  or gotten attacked on a bus.  

The time  for her to learn new hobbies is past.  She isn’t at a level where she can learn new things.  

I also think you care deeply about her.  my suggestion is to buy a copy of the book the 36 hour day and look up an article on the internet titled ‘ understanding the dementia experience’. 

ZackFootInMouth

Oh yeah I was definitely in denial. Denial is one of my most familiar, most reliable, and very risky, coping mechanisms so I don't lock myself in a feedback loop. (And also, I know I'm lucky nothing involving a big fire or flood has happened. And I was totally comfortable as a toddler to take the bus and see a doctor on my own. But that's another trauma.)

Professional acting by my mother to her doctor was something I needed to follow up with for the longest time and I didn't. I also took my mother at her word for everything when I shouldn't have. Like when or what she was eating.

It took a few tries to successfully tail her (and rush home before she did), but I had a more accurate look at how she operated in public. And it was surprisingly well, even if I knew she was fudging a lot of the details (counting change, knowing how much bus fare was, actually entering the doctor's office).

I started taking these detailed notes around September 2022, but this was after five years of nominal decline and two years of rapid decline. Let's see if I can still reconstruct this timeline (mostly for my own benefit; I've got scraps of paper, emails to myself, complaining about situations I had anticipated earlier). 

2015 - My father was hospitalized and died; almost immediately my mother went home and began tossing his things out windows, arranged a small bonfire, and started dancing. Quick summary: my dad had a military background and was very controlling, but he did keep the trains running on time. I was recently unemployed so I boomeranged back with mom, and a with a family friend, the three of us took care of/were servants of my dad until his final days.

2016 - I tried to teach my mother all the things she was supposed to learn (banks, bills, home maintenance) but wound up making dummy accounts so I could continue managing those things I used to do for my father. It was going to be more difficult since my father had planned (for offloading paperwork to me) since shared the same name; I couldn't exactly do that with my mother, but I had a window to automate bills at least.

2017 - I wanted to push for Power of Attorney so I could handle finances directly (and above-board), but this meant convincing my mother to leave the house to see strangers. She was always antisocial, and now had the freedom to say no (and was enjoying it quite a bit). I was starting work again, leaving my mother at home to tend to what she knew best: housework.

2018/2019 - A lot of stuff that she upended three years ago were still not organized. Both of us had different opinions on what to do (donating, moving, etc.).  I don't remember much, but I assume these were good years. My mother's mother passed away last year and she took a trip overseas to visit her last surviving relative, her big brother.

2020 - The pandemic happened and it tore through the neighborhood. Most neighbors were retirees, so friends were either moving to be with family or outright dying. My mother's brother, living overseas, was diagnosed with stage 3 cancer. I was fed up with the mess our home was in (and had become disheveled and disoriented in a similar manner). My mother had become a recluse, ignoring calls from extended family or friends as well as the phone in general. Both of us were reluctant of going out for any reason.

I had typed up a lot from 2021 and 2022 (and now), and I had to power through some moments and something remember something organize something something. I'm just out of energy.

ZackFootInMouth

The message board time-out ate my reply. And I wanted to give up. I want to give up and lie down and wait for tomorrow. But I have dinner to make. And groceries to get. And a shoddy recollection for me is better than keeping it inside and confusing myself if I did it or not.     

2021 -  The big event was that my uncle's colon cancer hit stage 4; he would pass away late in the year. I liked him; he was the engineer of the family and one I could relate to the most. He sounded like he was a lifelong smoker at the end. My mother refused his calls, justifying "he was dead from the moment of the diagnosis". This was cold, but not surprisingly it's a traditional manner of thinking for folks from the old country; I didn't realize this then, but this could have been a sign my mom's thinking had reset to an earlier mindset. Around now is when my mom started to stumble over her words, default back to her native tongue, and sometimes even forgetting words in that language. I had my job shifted to double weekend shifts so I could spend the weekdays at home, which also rendered me a part-timer.

2022A - My mother became more clingy and paranoid. Pandemic protocols were being scaled back. Any time I had overtime or trips, she called or I would call home to reassure I would be home soon. We would each go out grocery shopping, separately because "someone needed to guard the house"; this was more true when she stayed home because she would barricade the doors. Once I had to call for half an hour (I remember because I walked back to the bus stop for a donut) because she had paniked and forgot how to pick up the phone; my alternate form of entry was to climb the trash can and push open my 2nd story window (assuming mom didn't do a random sweep through the house and lock it). Any trips to the doctor and follow-up calls came back "clean" and "this is part of aging". Sometimes she would have her medicine (Lipitor, multivitamin) -- other times she would be fussy about the shape or the size or the flavor. She was fussy with food too: it's too hot, it's too cold, it's too salty, it's too bland. Newer medications, for osteoporosis or elevated blood sugar, wouldn't be readily accepted (nor would additional vitamins, unless they were in gummy form and even then she could smell the vitamin ones from the regular ones); eventually I convinced her doctor to recommend a neurologist who gave a sample prescription of Aricept for memory-loss (two of the rather large pills were taken, but the rest I found were tossed along with every other pill and bottle she ever had in one of her mood swings of "it's all poison"). I finally got around to scheduling a meeting with a CELA at the end of summer. It cost my life's savings, but I knew it had to be done.

2022B - Early autumn, I pick up COVID. I shelter in a hotel for a little over a week and I still grapple over my decision to do that. Overall, it was begrudingly needed to protect my mother, but when I came home she was... squirrlier. The home looked about the same, but she was much more sensitive to noise: fluorescents buzzing, the fridge compressor rattling, birds poking at the windows were all signs to her of "them" trying to get in. "Them" being evil spirits, the neighbors, the neighbors farther down, the former (dead) neighbors, or her relatives (even the dead ones). Sleeping became a problem. And so was eating. And then came hallucinations. She had sewn the drapes shut everywhere, because anywhere the light touches she could be "seen" (there's a sundowner syndrome in here possibly), but she poked holes to spy on what was happening in the street. She would spend time watching the streets rather than watch television. I'm not sure this was late-2021/early-2022, but all the broken appliances that need tricks to start were just too much of a hassle to do (so she did without the vacuum, laundry, shower, television, microwave). She insisted on boiling her own water and hardboil the eggs (more and more of every carton we bought were immediately hard-boiled; conversely she ate fewer and fewer of them); only twice was there ever a strong chance a fire would start. Getting her to eat was ... confusing; I don't remember now when exactly I did what, but I think early 2021 I noticed she would pick at my leftovers in the sink more than she would eat with me (or heaven forbid I try to feed her). I would leave unfinished food out and she would go after that. An unfortunate effect of this was that anything she didn't get to, ants would find; there are now multiple colonies in the household living off of cannibalizing themselves, and in the summer they will sprout wings and swarn into the kitchen (it was definitely 2021 because I had to spray with borox twice; I need to call a pro fumigator in 2023). The last issue was hallucinations. From lack of food or sleep or the isolation, she would find someone to talk to -- mirages sitting in parked cars or walking their pets at dawn. They had backstories, they gave her advice, and since she was at the window all the time, they were often available. She would obey them, like hiding my wallet or my keys to prevent them from being stolen. I had to preemptively counter-hide everything that I became squirrely too.

2023 - where we are now, I don't know. At the advice of the board members here, I started hiding and locking away sharp objects and harsh chemicals. At one point, my mother was sneaking my cough drops, chapstick, and shaving cream into her mouth. The handsaws my mom had used to tear down a tree just in June (after several bouts of dehydration, exhaustion, and heat stroke -- which I was used to from taking care of her annual migraine that hits her with excruciating nausea and headache, immobilizing her to the floor of the washroom) now sat in a vat just beyond the front door that I was now sleeping in front of on an inflatable to prevent her from using. There are so many beds in the house (because my father was a giant cat), but she sleeps sitting on a stool by a window; at times she has fallen from said stool and sometimes learns better.

November 2022, she had a mammogram appointment. She knew she had that. She was going to go. I had gotten good at trailing her. I just didn't think she would go before dawn. At some point, I rolled over and she had enough of a crack to slip out the door. I woke and saw her shoes were gone, the keys were gone, and made calls to the doctor's. And then my first 911 call. It worked out well actually; that afternoon, my mother came home claiming everything had gone well and she had gotten groceries. A follow-up appointment was made, and she went to that at a reasonable time. 

Just two weeks later, I had ot make another 911 call. This time she had gotten into a shouting match with the wall (to "the neighbors" who clearly started it) and wasn't going to take their threats and would "strike first". She dug around for a weapon, and the only things available were spoons and the butter knife. Thankfully mentioning the word "knife" makes police arrive immediately; as she was fumbling opening the door, I took the knife and all of us had a chuckle in the snow. I should have put on shoes.

My mother was almost immediately discharged from the hospital; she was docile, compliant, and the emergency psyche said she wasn't an immediate harm to anyone and thus was dubbed safe if not sane. I showed after work and in an overreaction, I decided I wouldn't sleep. I would tether myself to her the remainder of the week (and would sleep when I was on the job) and annoy her to behave -- open the curtains, stay away from windows, eat what I cook, sleep when I sleep, don't leave the bed to look out the windows. That lasted all of one day. The 2nd morning I went to the bathroom and saw my bed and was so tempted I took a nap in it. Woke up eight hours later to see my mother limping in the kitchen, squishing ants on the counter. Upon closer inspection, she was wearing one sock, the other foot was incredibly bruised. I asked and she said the neighbors did it (like who ate my chocolate, or why the lights were turned off); I asked how, she went to the bed and slipped out a hammer from between the mattress. "They were going to draw & quarter me, so I gave them their quarter and they stopped talking about it." She was proud when she said that. I realized she must have gotten that from the toolbox I locked. First, 911, they take her away again. Second, go downstairs and I see the butter knife. It was a crummy luggage lock, but I thought it would be deterrent enough.

Again, the hospital almost immediately discharges her; same reasoning. I pick her up again, and as I would find out soon, we would both get exposed to COVID this visit. We're at home, the discharge papers say to have a followup with her general practitioner. I force her to go the next day under threat of calling 911. The next morning I'm up and she's already out the door. I'm certain she didn't call the doctor so this is pretty much a surprise visit. I go out half-dressed and follow. (Yes I get that this is like sending a child out to buy cigarettes, and then spinning a roulette wheel to see if this tail succeeds.) She wanders around for a bit, gets lost, goes to her GP on instinct to ask for directions from the doorman (who really doesn't understand the words coming out of her mouth), and I kidnap her and take her up in the elevator. In the waiting room, she's squirming, doesn't want to sit, hates the smell, hates people looking at us, and wants to leave. The doctor won't see us, we have to wait. And my mother is invoking her authority, but I've had enough. I break out my zipties and tether myself to her in public. She goes ballistic and has a tantrum, stomping and squirming on the floor like a four year-old. She wants scissors, she wants out, she hates me. I wave off people who offer scissors, I am getting what I want, which is an audience with her doctor. My mother sits on the floor all sullen and pouty. Her doctor can't really tell me this is normal any more and I force them to do something: they call a psychologist and a neurologist, but when they pick up, my mother starts shouting, and they say they won't take on anyone like that as it puts them in danger. We run out of options, we call 911. I cut off the ziptie, my mother sulks, but calmly is escorted by the EMTs (again).

So for all of December, my mother is hospitalized. And except for the first week when we were both diagnosed with COVID (fun story, she was completely asymptomatic while I was waylaid for five days) I visit her every day between weekends at work. I bring care packages at first, then I learn I can help with "feeding" (because she rarely eats their food, or puree, so I bring candy and cookies which she gobbles up), and I take videos and pictures to capture her mood swings (usually sulky, sometimes depressed, other times giddy; the cycle appears to be starving, fed and upset, upset and depressed that everyone is dead, and then upset and hungry to see people who aren't there, back to starving). The hospital social worker is struggling to find a facility that will take my mother. My CELA is struggling to get all they need to apply for Medicaid (it's been months, but I don't know the timetable given that it is winter and a new year is about to start).

After a month plus, a nursing home becomes available (it is twice as far away as the hospital though). My mother lost 1/5 of her body weight and the use of her legs (which are now sticks). And the CELA's social worker suggests permanent housing in a nursing home (preferably one closer; I want one with locked doors so  the other residents don't sneak in at all hours of the day to rummage through the trash) so the CELA asks for another retainer because the original deal six months ago was to find a live-in-aide. And that's... mostly caught up. There is probably more trauma I've forgotten, which may or may not be great. But I'm bringing Jelly Drops, fruit bars, peanut butter drops, and hearing more stories from the roommates and aides.

ZackFootInMouth

I am loosing faith in having a CELA. I've paid 20,000 to apply for Medicaid and nothing has happened. I'm being asked to pay another 20,000 to apply for guardianship as their sole next of kin. 40,000 in six months is a bit above my 12,000 annual means.

And to the post, watching their LO decline was like watching an ice cube melt, mine has been like watching it evaporate. The speed it went from forgetting words 5 years ago to forgetting the time last year to forgetting who I am some days. I don't know how to face her and roll the dice on that 1-in-6 chance she knows where she is (much less if she's being treated well by staff or other... Inmates. The day room lunch sessions are somewhat tough to look at.)