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I think this is more of a vent/rant than request for answers, but I'm frustrated today. I've been reading here for exactly three years, since Mama's ALZ diagnosis. I can't begin to convey my gratitude for all the help and encouragement you all have given me. I don't think I have this in my profile: I'm a part time long distance caregiver, half the month up close and personal, the other half away which I cherish as respite.


I usually know better: Don't tell her future plans until the day before. But the church where she's been a member for 65 years is having a special ticketed event for the pastor, a banquet in early September. She hadn't been to church in a few months (long story, it involves pulling hens teeth!), two weeks ago someone told her about it in passing (literally, we were at the pharmacy and bumped into another member), and Mama said she'd like to go. Repeatedly. She also griped about how no one bothered to call her, wasn't she a good enough member, etc. The following Sunday, I got her to church, my cousin ensured I could purchase Mama a ticket, and she offered to hold it to ensure it doesn't get misplaced, since she and her husband will be taking Mama.


Since then, no matter what, the banquet has become a major topic of conversation every day. Several times a day. "Is it tomorrow? When is it? Where is the ticket? When is the date? What time is it? How will I get there?" I thought I could quell these with what I call a "job aid", a large type one pager, with the date and time, where the ticket is, and who's her ride. I even programmed her Alexa to answer if she asks "When is the church banquet?" Maybe that's where I went wrong. Now it's more "When is September? Is it tomorrow? What if I miss my ride?" I tell her to read the paper and ask Alexa which gets her hot mad.


The kicker: She got up yesterday, thinking the banquet was today. She was adamant that I didn't understand, who wrote the paper, I could be wrong, we need to call the church and my cousin, and was really agitated to a level I've rarely seen. (Yay for ALZ changes.) She cried, I cried, then she settled down and took a nap, slept through dinner time, and I let her. I took a post dinner nap, and when I got up at 10:30pm to check on her, she was fully dressed in the living room, "waiting for her ride to the banquet." And mad as all get out when I ushered her back to her bedroom to undress and go back to bed. To be honest, she was mad when I tried to explain that no church banquet would be held at midnight during the week, and there was no way my cousin was coming if it were! LOL


I reworded the job aid to say "The banquet is NEXT MONTH. It is not today.", adding I and my cousin "will make sure you don't miss it." But I know, like the sky is blue and grass is green, that likely won't help. She always was analytical, curious, independent, self-sufficient, and a bit obsessive/compulsive. She could also be cutting, dismissive, and derisive, and I learned over my lifetime to not allow that, to not accept it from her, uphold my boundaries for my own self care. I think ALZ has dialed that all up to 11. This morning, she said the solution is that she "just won't go at all, how about that?" Whew, she tires me out.


Do I keep or toss the job aid? Any rewording suggestions? I'll take any ideas for how to help/divert/distract her and keep my sanity!

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I think there's an element of loss of confidence and control that plays into this phenomenon.   I've experienced it myself, sometimes still do.   

Healthy people with control over their lives can plan for an event, and carry it out.   When that control is lost, I think we either consciously or subconsciously recognize that loss of capacity, and try to balance it by extensive planning, repeated over and over to ensure that we've missed nothing.

The anxiety over when, transportation, etc. seems to be to arise from her lack of control over her plans, over getting out, and being dependent.   She needs to be assured she can actually get to the event., but doesn't remember asking so she repeats herself.   

To me, this also infers that it's a significant event in her life at the time; it's important to her.    But it also infers that the lack of mobility and dependency on others for transportation weighs heavily on her mind.

(This happened to me once; Lyft couldn't find a return ride from an eye appointment and I was left stranded (with eyes dilated) about 15 - 20 miles from home, on a 90+ degree day,   The local Enterprise branch wasn't answering its phone, and it's the only pick-up auto service in my area.)  

Do you have a large calendar on which you can post events, then you can write in large letters the events to which you take her?    Then every day, before she retires for the evening, let HER cross off that day.   She may not remember the significance, but you can point her to the calendar so she can see the number of days left.    The key issue here is whether or not she'll be able to understand the significance of the calendar.  (That's NOT a criticism, just a query.)

As to going over details repeatedly, I've done that when I had to take Dad somewhere and I was too stressed to just remember.   Those were what I called my brain's super colliding superconductor days, with particles and ideas bumping into and colliding with each, with no clear path to be able to think coherently and plan accordingly. 

I had to sit down and write out each step, each item I wanted to take, check it a few times, and again before I left.   There was just too much on my mind, too many things to do, and things I knew I could never accomplish for either my father or me. 

When you get frustrated, think of how much frustration she must feel.   That's not a criticism, just a suggestion, as I know it's hard to step back and put ourselves in our parents' places, but doing so can be enlightening.
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oyadancing Aug 16, 2019
GardenArtist - Thank you! Come to think of it, it is indeed the independent transportation issue, now that her car (long gone) and public mass transport (too confusing) are out of the picture, so true. In Philadelphia, she has so many options but all require her to schedule in advance and depend on others, known or unknown. When she had a regular ride to church, she'd never sleep well the night before, for fear of missing them, so she stopped accepting and stopped going unless I take her. Time for me to look at ways to reduce her anxiety.
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I empathize with this, I really do! I remember my moms doctor telling me not to tell her about things like weddings on advance! Bit the cat is out of the bag, isnt it?

Has your mom ever been evaluated for psych meds? Sometimes they help a bit with the the chronic anxiety that seems to accompany ALZ. Remeron in particular seemed to help with my mom's agitation.
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oyadancing Aug 16, 2019
Thank you! I've been wondering about that, anxiety or depression meds, and her primary physician offered; I think it's time to see what could help. She has mild bradycardia, so we've been hesitant to give her anything that may impact that, but looking back over the past 6 months, her naturally occuring (LOL) anxiety has ramped up and is likely affecting her quality of life.
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