2023-09-10
Mom's first words this morning: Where are we?
Leading to a long reorientation session.
She accepts the information but doesn't have any personal knowledge of most facts of her life.
She saays:
I don't know what I think
I don't know where I am
I don't know where I'm going
I don't know where I've been

(Quick, hand me a guitar!)

There's no alarm or distress, just wonder at having no memory of the past or grip on the present.

#ElderCare #Dementia #OldOld #MemoryLoss
@caregivers

I say my father's full name and she says, oh, I recognize that name. Matter of fact. I say, and you had three daughters, and she names us all without hesitating.
She asks if my father is still alive, and I say no, he died in 2010. End of questions on that topic.
In contrast, the last word my father uttered before/as he died was "wife." Though, to be fair, his wife was by his side at that moment.
2/2

#stroke, #dementia #ElderCare #OldOld #MemoryLoss #JudgementFreeZone @caregivers

Confirmed this morning that my mom doesn't remember my dad, or being married generally, it seems. I had an inkling b/c she never asks about him, whereas she sometimes asks if her mother or brother is still alive. Never her husband.
She asked whether she had always lived in this house and I said no, you lived in Atlanta until you got married., then you moved to Delaware. And she asks, and who did I marry? 1/2

#stroke, #dementia #ElderCare #OldOld #MemoryLoss @caregivers

And I kissed her goodnight and again we admonished each other to avoid shpilkes, and I’m still smiling about this conversation three hours later and she likely won’t remember a thing about it and will be puzzled when I wake her up tomorrow, singing, Good morning, Shpilky!
6/6
#Caregiving #ElderCare #OldOld #Yiddish #Riffing #AskBeforeItsTooLate

Mom, eating a piece of brownie with a fork, looking at the fork: SANTA
Me: Where do you see that?
Mom: Before CLAUS
Laughter all around.
A few minutes later, Mom, looking at another piece of brownie on her fork, under her breath: santa

* * *
Then taking her pills, with me prompting at each one: Look to your left, do you see it?
Mom: NAG
Me: NAG?!
Mom: There’s an N and a G, so, NAG
Me: Hmmm

#CBS #CharlesBonnetSyndrome #VisualHallucinations #OldOld #ElderCare #RightHemisphereStroke

We celebrated my mom's 96th birthday yesterday, which coincided with Medicare's ~60-day cut-off of therapeutic services after hospital discharge, a graduation of sorts.
We're finding our way to the new normal.
It's unpredictable, precarious, and full of wonder.
#Caregiving #stroke #ElderCare #OldOld #ArthriticHands #TakeNothingForGranted

3/4 BTW, I found a possible medical description of her behavior: Visual release hallucinations aka Charles Bonnet Syndrome
https://en.wikipedia.org/wiki/Visual_release_hallucinations
The article doesn’t mention letters, but says the images are tiny. Today the letters were the size of the holes in a piece of matzo. Approx 1-2 mm in size. Another similarity: my mother has macular degeneration and is functionally blind in her left eye. (Right eye works.)
#CharlesBonnetSyndrome #AMD #OldOld #OldBrains #SeeingThings

2/4 She was pondering a piece of matzo and I asked if it was saying, “Eat me!”
She laughed, then squeaked out in a funny voice, “Eat me!”
I told her that I wasn’t worried about her seeing words in things, but if she started to hear objects talking to her, then I would worry. She laughed and said if that happened she probably wouldn’t tell me about it. And I said I hoped she would tell me about it, that I want to know, even if it makes me worry. #OldOld #OldBrains #SeeingThings #caregiving

I almost forgot – Mom's word-visions 1/4
Today’s words:
DEWBERRY (in the seam of a pillowcase),
COO (in a piece of matzo),
MOOSE (in a chocolate cookie).
Today she was seeing the word first, or extrapolating it from a few letters that were visible to her. She was doing this all day, but these were the only words she could piece together when encouraged.
I do love dewberry!
#OldOld #OldBrains #SeeingThings

My mom's "hidden" words of 12/28 and 12/29:
PROFIT
SASSAFRAS
The latter was supposedly to be located on her hands, or as she put it, referring to her fingers, "on these things." Not written there, but appearing there in some way.

She will also look for letters in the arrangement of crumbs, freckles/moles (I made the mistake of suggesting "connect the dots"), and the edging of sweater vests.

Later, she doesn't recall the word incidents.

#caregiving #OldOld #OldBrains #delusions #SeeingThings

*About the chair in 5/9: I put that chair in my mom's bedroom a while back, both as a dressing aid and also with the thought that one day it might be useful if she needed minding at night, or if she were to start spending more of the day in bed, to keep her company. I gravitated to the chair when it became clear this would be a conversation. It's comfortable, it felt natural, but I noticed. I wasn’t expecting to use it so soon. 9/9
#caregiving #ElderCare #OldOld

She takes the notebook and pen, thinks a moment, begins writing:
-- No news is good news
Looks at me, smiles, looks back at the page, and adds:
!
Puts the notebook aside.
Later in the day, she comments that I’ve written the date and “No news is good news!” and I remind her that she actually wrote that sentence, not me.
(End of story, an observation follows.)
8/9
#caregiving #MemoryLoss #OldBrains #OldOld

I come back to find her in her recliner inspecting a paper tissue (e.g., a kleenex, see pic). She is looking at the puckered edge.
P: What are you doing?
M: Trying to make out what’s written here.
P: I see only puckers.
M: No, there are letters, can you read what it says?
P: No. Do you have to blow your nose?
M: No.
P: Then maybe put that aside and write something in your notebook? 7/9
#caregiving #MemoryLoss #OldBrains #OldOld #SeeingThings

I find a half-size spiral notebook (no lack of paper in this house!), and she asks me to write down the date and day. I do. I suggest that rather than writing in it now, just out of bed, she wait til she’s dressed and in the living room. OK.
I go off to do other things around the house while she gets out of bed, etc.
(Purposely skipping the hands-on aspect of caregiving for these memory and hallucination posts.) 6/9
#caregiving #MemoryLoss #OldBrains #OldOld

I ask if I should do something unusual every day so she'd have something notable to remember (and immediately regret it!). She laughs and says, "You suggested it, not me!" All this while lying in bed, with me sitting on a chair by the bed.* I suggest she could write in a journal every day, at least then she would see her own writing and know she was there and lived through it. 5/9
#caregiving #MemoryLoss #OldBrains #OldOld

She doesn’t remember yesterday. TBH, nothing much happened yesterday, but I remind her of a few things: the TV show about Jim Gardner retiring, OK, she remembers that a little; latkes for dinner, mhm, maybe; lighting Hanukkah candles, I show her 5 fingers for the 5th light, and she says she remembers the papers on the table (Hanarot halalu, recited after the blessing, which I’ve printed out in large type). 4/9
#caregiving #MemoryLoss #OldBrains #OldOld

She keeps repeating that she doesn’t remember what happened yesterday, doesn't recall getting into bed last night. It's a mind-bending conversation, but I think I might be getting it. I ask if she means that because she doesn’t remember going to bed and getting up on previous days, it seems like she hasn’t been in her bedroom in a long time? Yes, she thinks it could be something like that. 3/9
#caregiving #MemoryLoss #OldBrains #OldOld

I point out that she has been “absent” in the sense that she’s been asleep, but she rejects the idea that she’s somewhere else in her dreams, because she doesn’t remember her dreams (she rarely did even before the memory loss). She says she feels like she's woken up in a familiar place, the furniture is familiar, but a place she hasn’t visited in a while. 2/9
#caregiving #MemoryLoss #OldBrains #OldOld

Mom wakes up thinking out loud that it seems like a long time has passed that she hasn’t been here. I don’t understand and ask her to elaborate. She tries explaining that she doesn’t remember going to bed, doesn’t remember being in bed, although she knows she is in bed in her bedroom. The furniture is familiar but she feels like she hasn’t been here (in the bedroom) in a long time. "Does that make sense?" she asks.? 1/9
#caregiving #MemoryLoss #OldBrains #OldOld

Going back to my first post about this, 11/4/22 -- still a good description: I'm #caregiver for my 95-yo mom and recently she's been... seeing, looking for, finding... words.
Today I notice 4 variations: (1) looking for a specific "hidden" word; (2) seeing a word or a hint of a word and trying to discern it more clearly, with the word in mind; (3) seeing letters and trying to make out what word it is; (4) seeing a word plainly, but no one else sees it. #OldBrains #OldOld #hallucinations +