My mom has short term memory loss. She writes everything down so she won’t forget. Everything that someone tells her, everything she thinks, who she talked to, appointments, etc. multiple times on multiple papers envelopes and all over her calendar. Then she sits and reads them over and over and over calling me many many times a day worrying over all the information in front of her. This got worse when she moved to an independent living facility a couple weeks ago. It’s now to the point that she’s exhibiting manic behavior, repeating over and over writing and reading and worrying over the notes. She can’t seem to stop or self soothe by turning on the tv or something like she used to. Should I take the pens and pencils away to give her brain a break or would it be even worse if she can’t write? Is it time for anxiety meds? Anyone else experiencing this?
I imagine you could tell her you are keeping track of her appointments and she doesn’t need to. But it probably wouldn’t help.
My dad also wrote notes on slips of paper or on envelopes and left them all over the place. They were weird too like “she yelped in pain and was dumped without water by the side of the road” or “she mastered the violin in her 30s and joined Rod Stewart”. Eventually I realized these were from the YouTube videos he watched for hours every day. He would also leave notes like “ask about the taxes” or “Annie [dog they used to have] died in 2012” or “look up definition of prevalent.” He made notes all over his calendar also. But eventually he could no longer remember what day it was or even if it was daytime or nighttime. He passed and at least I have a lot of keepsakes of his handwriting. 🤪 He could still write up to a day or two before his death.
How is your mom managing with finding the dining area, remembering mealtimes, general hygiene like washing herself and brushing her teeth and putting dirty clothes in the laundry basket and wearing clean clothes? What about managing money? I would caution you that sooner or later, difficulties in one area are going to spread to other areas. Good luck!
It is my opinion that you should supply her with paper and writing instruments so your mother can continue. Writing these notes may give her a tiny (although false) sense of control as she loses control.
My mother was still next door while doing this and she shadowed me for hours every day. The notes continued for her first half year in care. Then dementia stole her ability to write. Sounds to me like anxiety and boundaries are bigger issues than your mother’s writing. And she’s beyond processing the demands of “independent” living.
Hopefully her bedroom furniture was set up to be in the same position, if possible, as her previous bedroom position, which helps if she awakens at night.
As other writers have mentioned, check with her primary doctor to see what calming meds she can take until she gets use to her new surroundings. My Dad would also write notes as his memory was slowly slipping away. Eventually Dad moved from independent living facility over to the memory care section. He was quite happy with the place :)
We have set up her apartment as close to her house layout as we could given the smaller space etc. Her bedroom is almost exactly as it was and her living room and kitchen are very close to what she had.
After posting here I was able to get my mom a Dr appt on Monday morning which can't come fast enough for me.
Do you mind me asking, did your dad have a neurologist? My mom was diagnosed with Vascular dementia 10 years ago and none of her doctors has ever suggested getting a neuro evaluation. Now here we are feeling like we know nothing since this has escalated so fast and she did so well for so long. Just wondering a little more about your journey with your dad.
Also, what stages was your dad at when he went into AL and then MC?
My mom has had a very active life, skiing, dancing, hunting, fishing, hiking, bowling, golfing etc. etc. She's in very good physical shape, no walker, no falls etc. I think that it's been a blessing and a curse cause people just don't see her mental incapacity as easily since she looks so great and is a good bluffer. If you talked to her for 10-15 minutes you wouldn't guess she has such huge issues. If you talk to her much longer than that, you'd be driven crazy by the repeating and hearing problem etc.
As Leolonnie says, dont take away her paper and pen, but hopefully she can allow some assistance in tracking so there is less anxiety ?
She should instead be in an assisted living facility with a memory care unit attached for when her dementia gets worse as guaranteed it will.
This note issue sounds more like an OCD behavior which is so very common with someone with dementia, so I would talk to her neurologist about putting her on some medication to help with her OCD.
I do believe this is an OCD issue, I just couldn't name it while posting. She's never had tendencies toward OCD and this has become uncontrollable only since this very recent move.
I got a Dr. appt for Monday morning so I'm hoping things start to get better and can settle down so we can see next steps more clearly.
She would write everything down in a journal, and read it out loud in a loop.
Then, there were the questions about the info. Over and over and over and over-in a loud, manic, compulsive loop. It was hard on her, and also anyone in the same room as her.
Anti-anxiety meds helped the manic-compulsive behavior. She still asks questions, but not in a manic way.