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Notes and reminders are disappearing
Sabrend
Posted: Sunday, December 1, 2019 7:05 PM
Joined: 8/1/2019
Posts: 7


Mom keeps throwing away notes and erasing the dry erase board we leave with instructions reminders etc.  any suggestions?
Michael Ellenbogen
Posted: Sunday, December 1, 2019 7:44 PM
Joined: 11/30/2011
Posts: 2668


Are you sure she can still read or understand what it says and means? 


Mike&BrendaTX
Posted: Sunday, December 1, 2019 8:20 PM
Joined: 7/10/2017
Posts: 634


Sabrend,

Why not put the notes and dry erase board somewhere else, where she won't easily find them? 

Mike


Dreamer Lost
Posted: Sunday, December 1, 2019 11:12 PM
Joined: 3/7/2019
Posts: 324


I agree with Michael in that she might not understand what she is reading.  I used to put up sticky notes for DH which worked for awhile until he then didn't understand them.  Make sure any notes are kept short, basically 3-4 word phrases.  I used to have one on the bathroom mirror, ...shave, brush teeth, take shower, wash hair, etc.  You may want to put reminders in different places, such as on the refrigerator for .... don't forget to eat lunch, or next to the phone, etc. I had them all over the house.  I also still write DH notes everyday like today is ...., you are at home,.... our address is .....  we have a dr. appt. at ....and it gets old re-writing them basically everyday but saying the same thing.  You might also use Alexa with voice reminders at different times of the day.  You definitely have to get creative with this disease.  Just know that whatever works now will probably only last so long and then you have to find a whole new system. 


Abuela
Posted: Monday, December 2, 2019 5:20 AM
Joined: 6/24/2012
Posts: 403


Your mom may have lost the ability to understand the notes or to understand the reason why you wrote the note. 

Notes did not work for my mom.  Deep breath here... because I did not realize how far along she was.  She would ask me to write down her appointments which of course I did.  But she could no longer understand time or read a calendar.  I would write post it notes on her door.  She would lose them.  I would put them on her bathroom mirror.  

I finally realized that she could no longer be a partner in this part of her life.  I would arrive at her place an hour before an appointment in case she was at an activity or still in her nightgown. This allowed me to get her dressed or gently remove her from the activity.  Sometimes she would be waiting for me at the door of the facility two hours before the time I told her and then would call me in a huff complaining that I was late.   

When she stopped showering ... again I never realized it was happening... I left notes reminding her to take a shower.  What I never realized was that in her mind, she had been showering everyday and did not understand what the note meant and why I would write such a thing. 

She now is in stage 6 in a MC unit and at each visit she becomes obsessive about my phone number.  She has my phone number in at least 7 places in her room.  She has lost the ability to use the phone.    I patiently write it down again.  She 'reads' it to me (with errors that I ignore) and confirms it with me no less than a dozen times.  As much as I deflect to other topics... I can't get her to stop.  What I understand is that my phone number is her link to me when I am not there and it is of extreme importance to her.  But still... it is so hard to go through each time. 

Just take it one day at a time.  


harshedbuzz
Posted: Monday, December 2, 2019 5:34 AM
Joined: 3/6/2017
Posts: 1838


It sounds like written prompts are no longer useful to your mom.

For a long time, dad could "read", aka decode words, but had little comprehension. He used to read me random street signs when I drove him places or headlines out of his copy of The Week but he couldn't process what they meant or hold onto the thought for very long.
Sabrend
Posted: Monday, December 2, 2019 7:02 AM
Joined: 8/1/2019
Posts: 7


I thought maybe it was her need to be tidy. Everything in its place. No clutter. I didn’t consider that she didn’t understand the notes.  I’ve written the schedule for home visits and she was happy saying it would be helpful and read it back to me but next day note is gone
jfkoc
Posted: Monday, December 2, 2019 8:22 AM
Joined: 12/4/2011
Posts: 17547


Now is the time to turn off the answering on the phone.....sorry
Eric L
Posted: Monday, December 2, 2019 10:11 AM
Joined: 12/5/2014
Posts: 1192


It's always so hard to figure out what is going on in their heads. It could be a number of problems, but we figured out with my MIL that the notes just doesn't hold any meaning anymore. If she read stuff, she could usually comprehend it (or at least understand what it said), but something got lost on the way to the part of the brain that processes that stuff.

She even wrote her own notes when she was more with it and those didn't seem to matter, either. My wife left a "remember to wash your hair" note in her bathroom and that made her more mad than it helped. Eventually, it was like she didn't even see the note (I guess that moves more into the comprehension part).

Note and reminders work for a while, but we sort of found out towards the end when she had really lost track of time and place that the notes were more of a hindrance then a help. She'd read the calendar or schedule and see an appointment and get upset about it or you would tell her (like Abuela's story) about an appointment and she would get ready hours before it was time to go.

If the notes and white boards seem to make her content in the moment and that don't seem to cause any anxiety right now, continue to write them. They probably won't help her, but if they give her comfort while you are writing them, don't worry about it too much.
SunnyBeBe
Posted: Monday, December 2, 2019 10:30 AM
Joined: 10/9/2014
Posts: 784


My LO never could process the information in a sticky note or a sign. She was able to read what it said. She would even read it out loud for me, but, she didn't know what it meant. The note might say, Press button for help, but, she would sit for an hour without pressing the button. She just could not process it. Verbal reminders were equally worthless.  When in regular AL, the staff would remind my LO that it was time for dinner and to come to the dining room, but, she would forget the reminder on the way to the dining room, turn around and return to her room or get distracted and sit down in the lobby. Eventually, direct supervision is needed to prompt for all things.
Victoria2020
Posted: Monday, December 2, 2019 10:47 AM
Joined: 9/21/2017
Posts: 43


Abuela wrote:

What I understand is that my phone number is her link to me when I am not there and it is of extreme importance to her.  


 

Hi Abuela--wonder if getting your mom a stuffed animal with a recorder inside would help--you could record a brief message and she could hear your voice without having to remember a  phone  number.


Rescue mom
Posted: Monday, December 2, 2019 1:49 PM
Joined: 10/12/2018
Posts: 1147


My DH lost the ability to comprehend notes very early, and it took me a stupid long time to realize it. He could read the words out loud, if asked, but they got lost somewhere along the way before he could act on them. 

Lists of food in the fridge—-for lunch or snacks—was the worst. He could read the words if I asked him, then he’d just stand there with the door open, staring inside. I could say “here’s the whatever,” and he goes “ohhh I did not know”. About 15 seconds after he read it aloud....

I still don’t understand it, but I do know notes just stop working.

What sunny bebe said is spot on.

The phone numbers, I have no idea.


windyshores
Posted: Monday, December 2, 2019 6:50 PM
Joined: 2/16/2019
Posts: 69


My mother throws away notes. She even threw out a big poster I made! She keeps taking bandages off and taking a shower with a dressing when told not to etc. etc. Notes make no difference at all. I tried leaving a note telling her she had already ordered a meal but that didn't work either.

 I do find that a desk calendar still helps- sometimes.

 
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