The Road

StepByStep5473

My biological mother, Rv, has always had a problematic relationship with myself and her family. We frequently step/ped in to assist whenever she painted herself into a corner. We spent a lifetime getting ghosted unless she needed something or saw an immediate benefit in engaging w/ one of us. Needless to say the family dynamics were a mess, but we all adjusted and overall made positive changes. Around twenty years ago, Rv made some positive changes in her life, completed a masters' program and started regular employment. Rv still pulled the same 'the world owes me' behavior from time to time however much less frequently and was more honest about what happened, etc. Rv had two older sister. About six years ago the younger of the two started having heart issues and five years ago the oldest passed. Prior to that one or both of them went out every other year to physically check up on her (remote region). In late 2017/early 2018, my living uncle-in-law (oldest maternal aunt's husband), living aunt, and I started asking each other if we noticed something very off with Rv's communications. Cycling through the same stories, mentions of needing to write things down or not having written things down, struggles spelling things (4.0 Masters' graduate - always intelligent, not wise), etc. We started getting help from acquaintances near her to drop in. 2020 COVID-19 shut down her small business, 2021 Rv frequently went silent - ghosting again? (not unusual) - 2022 the same stories from 2018??? - - - then my uncle-in-law passed away. A few days later Rv's neighbors reach out to me - ((thank them truly)) - something is very wrong. I rearrange life. I get out to the place. Rv recognizes me. My maternal grandmother's (Mom to me) family home is meticulously organized and filthy. Squalor. I start cleaning and getting appointments. Rv is onboard. She's glad to see me and does feel a bit off. Neighbors come out of the woodwork to help me clean, to fill me in on their experiences. Rv has size 18/20 clothing in her closest and drawers. Rv is at that point a 12/14 M petite. She is excited about moving across country with me. Issues in the house that are apparently years old (since aunts' last visit), I have fixed within a week if I can. I get a reputable property mgmt. team. We visit Rv's sister half way between Mom's house and mine. Rv is shocked by how old her sister is. She breaks down a few times a day learning (again) for the first time about her other sister's death or her brother-in-law's death. A few days later, she knows they are both dead though she's iffy on the timing. On the trip from Mom's house to her sister's (a two day journey), Rv mixes me up with her two brothers, her father, and her godfather, but comes back to who I am every time; eventually. Rv has hyper-stylized "memories" of events (real and imagined) from her life including my childhood. Some events are made up of bits and pieces of happenings spread out over generations packed into one. Rv, her sister, living eldest brother, and my cousin (deceased sister's daughter) own Mom's property. Depending on the day, Rv owns it but was forced out by her sister or her sister owns it but forced her out or charitably let her live their (closer to the truth) or some other variation. Rv is in her late 60's, her blood-work good, her MRI good, her memory/recall not so good. We get home. We move her in. She clicks well with her MD/Geriatric specialist. Rv's MD is guiding me as well. Dept. on Aging - great help (all volunteers). My employer - great help/very understanding. Same for my dentist, eye dr, etc. Rv had some serious oral infections; all dealt with. Some days Rv cannot recall how to use the phone, words (speaking, writing, or reading). People around Rv the last fifteen years report her as a kind, loving, helpful person. Rv here is much the same. I really like this Rv. The Rv I knew only pops out here and their in short mild bursts. Kids are grown; visit a couple times a month. Rv is enjoying that. Rv is making new friends - that one lady with the red hear, that one lady who drives bus, that one lady with the white dog. I want to organize to allow Rv and I to age in place with in-home care for Rv as needed and out-of-house activities. Right now, I take Rv to everything. 

I'm looking for perceptional breathing room. I know I chose this and didn't have to. I know many don't and no one faults them - I certainly do not. Such praise - which I hear too often - isn't helpful. I don't know if any words are particularly helpful at the moment outside of shared experience, learning do's and don'ts from those who have already traveled this road. I don't know.

SusanB-dil

Hi StepByStep - welcome to 'here'.

Are you looking for some respite from being with Rv?  Maybe check out an adult daycare center?

Has she been diagnosed with anything or any other causes for the forgetfulness?  Check with a neurologist.  Also make sure you have any DPOA and HIPAA access papers in order.

mommyandme (m&m)

Im caring for my mother in her home since we moved her to CO in June 2020.  My plan is to keep her here until her last breath.  

We did adult day care which was fine until she needed a two person assist (although I can transfer her etc.. fine by myself) so they fired us.  

If I didn’t have some hours of in home care each week to help me get out and away, I wouldn’t make it.  It took awhile to get a schedule figured out that I could survive with but it’s well worth it.  

Maybe that’s an option for you too.  

This is a hard road for sure. 

StepByStep5473

Hi - SusanB-dil &  mommyandme (m&m), 

I'm not looking for a respite from Rv at this point. I have many breaks. I'm looking to get Rv more activity. However, we are still assessing what her overall ability is at the moment. One day she can fully bake a banana bread loaf with minimal assistance the next she has no idea how to measure or what 'mash banana' means.   

Regarding DOPA, we're working on the paperwork. We have the draft of the DOPA and other paperwork being drafted. To date, Rv has been adamant with each service provider that she absolutely wants me fully involved. Providers in our old remote home town and 'here' have been incredibly gracious with both of us; helping us through the processes. 

At present Rv's tests and prognosis aren't pointing to anything specific beyond the assumed mico-strokes. Rv has neuropsychology testing coming up. One of the benefits to moving 'here' is the resources available. As I mentioned she has a great PCP now who has specialty in geriatrics and memory care.  

Rv is enjoying meeting new people, my acquaintances. They are also enjoying getting to meet her.

I'm looking at 'aging-in-place' options including in home care as well as home improvement and budgeting. 

There is a lot of extra involved. I am attempting to prioritize and organize. I'm good at both. I'm just learning in this situation what the priorities really are. 

StepByStep5473

I detest waring shoes in the house. I believe I leaned this from Rv who now wares socks and slippers or shoes all the time; "too cold" she says. 

Anyway, today after our walk, she suddenly tried tickling my feet. 

"Oh, aren't you still ticklish?", asked Rv. 

"I am. I just have more control over my reactions now that I'm much older.", I replied.

"Oh, I guess that makes sense.", Rv replied. 

"You know I remember when you were little."  - Rv

"You do?" - Me

"Yes, do you remember when I took you to visit your great-grandmother ((my father's mother's mother)) and you climbed up on her piano?" - Rv

"I don't. I was a year old." - Me

"I guess you have a hard time remembering things sometimes too." - Rv

"I guess so." - Me

"Your great-grand mother ((not her name)) wanted us to go to dinner. She said, 'Everyone it's time to dress for dinner.' I told <my biological father's name>, 'I'm already dressed what is she talking about.' <my biological father's name> just laughed and said, ''She means formal clothing.' He told her we hadn't brought anything for that and I didn't have anything like that but he didn't tell her. She took us out and bought me a dress just to take me out to eat. She bought you a really nice outfit too. You were so small. It would never fit you now. That dress was so beautiful... Then <Rv's youngest older sister> was made prom queen and needed a dress ((a high school event that occurred three years prior to the piano/dinner event)) and she didn't have a dress to where and mom made me let her ware my dress that your great-grandmother bought me! I told her, 'Don't you dare ruin this dress.' ((given with dramatic venom and clinched teeth)). And she got sick and we had to go get her." - Rv

"Who got sick mom?" - Me

"No, <Rv's youngest older sister> got sick while she was at school in <location>" - Rv  ((That was my fault, we both referred to Rv's mother, my maternal grandmother, as "mom" while I was growing up.)) 

"Oh." - Me

"Yeah, Dad & I went to get her." - Rv

Then Rv got up and walked off.  

Events are ((and sometimes are not) real, 'when' they occurred, how they occurred, what order they occurred in, who was involved, etc. get rearranged with every telling. 

I'm not complaining, just documenting some of the oddity.  

mommyandme (m&m)

Yes, this is a very strange adventure.

ButterflyWings

Confabulation.

 https://clinmedjournals.org/articles/ijnn/international-journal-of-neurology-and-neurotherapy-ijnn-4-070.php?jid=ijnn

StepByStep5473

ButterflyWings - Thank you for the link. I am constantly reminded of descriptions regarding Mr. Toad from The Wind in the Willows. It is nice to see the behavior documented outside of a good few fictional references.   

StepByStep5473

Rv (Biological Mother) has been improving physically every day since we moved her from my maternal grandmother's home alone in a remote area to live with me in an area with more resources and social interactions. The hometown MD and the new PCP/Geriatric specialist both explained the how's and why's. I'm grateful. She was close to hospitalization due to blood poisoning from infected gums and had a few other physical issues due to her poor selfcare. 

The social cues are proving very helpful for her in a lot of areas. 

I have to be very careful about my own portioning at meals because being about two or three times her size doesn't compute for her. If she serves herself, she will watch me and try to match my portions. She's literally made herself sick trying to match me bite for bite. The good news is I'm getting much healthier. I already ate very well, but I needed to increase water and drop portions anyway. Additionally, she isn't keen on matching me if my plate is largely fresh fruit or vegetables. In that case she's more than fine with only eating what she needs to for survival. 

Rv loved fruits and vegetables when I was a kid. Whether the dietary preference is a new or long standing change, I don't know. 

Anyway, over the last few days, Rv has been increasingly exhausted. I think she is getting up and wandering a bit between 2 am and 4 am then only occasionally going back to bed before 5 am. 

Do you think if we added another walk into our schedule it would help? 

Today mid afternoon, when I took a break from work to get some water and check in, she said, "I'm going to take a nap. I haven't slept since I got up this morning." 

It was such an odd statement. 

Separately, we went out Friday evening to a baseball game. She reported she had a lot of fun. I had to stand in line for an hour to get food while she watched the game. I found myself getting anxious that Rv would wander off, but I kept an eye on the section and kept myself acting in my usual, outgoing, appropriate manner. When I returned, Rv nearly burst into tears. She told me she had forgot where I went and started thinking I had abandoned her but kept telling herself I wouldn't do that. 

I was as calm as I could be. "You were right. I wouldn't leave you for no reason. I went to get us dinner (showed her the food). I was right up there (pointed to the lines). Id did take me an hour. I did get a chance to meet some wonderful people. (true and I told her about them). She calmed quickly and enjoyed the meal. She told me about a game she watched when she was nine (I know the story because I heard it when I was much younger.) 

It was a bit interesting to watch and hear her mix this modern Atlantic League team and play with my grandfather's game(s) in the South Texas Negro League when she wasn't old enough for grade school. 

jmlarue

Sounds to me like you have a pretty good handle on caring for your mother and, at least for now, you don't seem overly concerned with the progressive nature of dementia. The only thing I can provide is a little insight on dementia that may be caused by micro-vascular strokes. My DH was diagnosed with vascular dementia, which seems to progress faster than the typical ALZ sufferer. It's not a slow, steady progression, either. My DH has sometimes remained relatively stable for a few months, with no additional lost skills or difficult behaviors noted. When the change comes, it is sudden and is unexpected. I liken it to him falling off a small cliff. It's the sign of another TIA that has damaged another part of his brain, of course. The changes are seldom subtle. Early on, only his short-term memory was affected. With another micro-stroke, his long term memory is now clouded and confused. Difficulty finding his words (particularly naming persons, places or things), suddenly became unintelligible word salad much of the time following another micro-stroke. He suffered another within the past month that has stolen his recognition of family members - not just their names, but what relationship he has to them. These are just a few examples of the types of changes you might see in your mother if she continues to suffer these micro strokes. It would have been nice if my DH's doctors had been more forthcoming on what I might anticipate as my husband's dementia progressed. Forewarned is forearmed, I think. The first few times around this block, the sudden changes threw me for quite a loop. It's not so alarming now and I no longer rush him off to doctors thinking there's something cropping up that can be fixed - like a UTI.

ButterflyWings

Dear Step,

Please, please don’t leave her alone again. It sounds like she was terrified. It is hard to provide 24/7 line of sight supervision— I truly understand after 3.5 years of doing just that. But it is absolutely necessary. It only takes a split second for disaster to strike when dementia is in the mix.  You were very, (very) lucky.  https://www.lamag.com/citythinkblog/nancy-paulikas-disappearance-lacma/

(Quoting StepByStep... “Separately, we went out Friday evening to a baseball game. She reported she had a lot of fun. I had to stand in line for an hour to get food while she watched the game. I found myself getting anxious that Rv would wander off, but I kept an eye on the section and kept myself acting in my usual, outgoing, appropriate manner. When I returned, Rv nearly burst into tears. She told me she had forgot where I went and started thinking I had abandoned her but kept telling herself I wouldn't do that. .. “

StepByStep5473

jmlarue - I was under the impression that this dementia from micro-vascular stroke was slower in progression and partially reversable. I will put more time into research and speak with Rv's Geriatric & Memory specialists. Thank you. As you say, "forewarned is forearmed".

StepByStep5473

ButterflyWings (& jmlarue) - Yes. 

I will do everything I can to reduce time Rv spends alone. I was and am very upset at how poorly she responded to being out of line of site. I also felt terrible hearing and seeing her default negative perception of the situation. She held my hand tightly all the way back to the car when we did leave and while she was not unpleasant, she was consistently questioning my reliability regarding getting back to the vehicle. Once their, she was more relaxed. 

I do have some meetings when I cannot be at the house. Most of them, I do have a neighbor "drop by" to visit. Early on, Rv noticed and got very upset, "I don't need a babysitter!" 

Now that she has been here for a few months, she is recognizing (usually) that we chat regularly with our neighbors in and out of the house without any transactions. (Her wording.) She recognizes, "That bald neighbor, she's nice."; "That lady with the horses, she's nice."; "I like those ladies who say hi on our walks in the morning." 

She mostly recognizes me by name and station (Son). She does occasionally mix me up with her eldest brother, father, godfather or sometimes my godfather. 

StepByStep5473

The Road... 
323 days have past since I last posted. 

Rv (Biological mother) is still living with me. 

I started the processes, when she arrived, to get aid, but had some pushback from Rv regarding POA and other documents due to getting anxious and not understanding their need or nature. 

In late Dec '23, I had a medical event that put me in the hospital for an extended period of time. I'm recovering well and my companion and uncle took care of/watched over Rv while I was absent. 

My extended absence and illness affected Rv too it seems. We now have a POA, Health POA, and I'm working on funding for her care at home. I did take the advice given and got Rv some time at an Adult Day Services Center three days a week. 

My neurologist told Rv that the time out of the house was good for both of us which also seemed to (at least for an hour) promote a positive outlook from Rv about attending. Don't get me wrong, she enjoys every day she is at ADS, but in the evening or early morning, she frequently falls back into a "don't make me go" attitude. 

I'm also learning a lot more about how horribly Rv has managed her financials over the past few decades. She's nothing left except old DVDs, her SSA monthly distribution, and "friends" that claim they will "one day" pay back Rv for the interest free loans she has "given" them. 

She was always giving toward others even at the detriment of her own family, but this goes beyond that and into shameless exploitation on the part of "her friends". 

Anyway, M,W,F Rv goes to ADS, Tues & Thurs, she has a third-party care-giver over from 9 AM to Noon. 

When I go away for work or other events, she has a third-party care-giver over. 

Rv has been diagnosed with Alzheimer's in addition to the mini-stroke caused and physical trauma caused damage. Rv had a lot of negative and abusive relationships while I was away raising my children and whatnot. 

If the State applications for aid are approved, I will at least reduce how much I am hemorrhaging financially in this endeavour to get Rv the care she needs as she progresses. She also developed glaucoma, so an eye drop in each eye in the morning and the evening. It's usually not a problem, but sometimes Rv decides she doesn't need her meds (any of them). Those are not fun scripts to work through and get out of.