whiteboard to help with memory loss

smbren

Hello wise ones! I say that positively as I've gotten some great feedback in the past.

My LO is my mom and we have been struggling through various phases of this disease.  At this point, the short term memory is getting very bad and I decided to try a whiteboard that we can put the daily activities and upcoming days (up to a week) to look forward to. 

This was partially done because Doctor's appointments, blood draws, etc she would forget about even though we would mention repeatedly in the days coming up to it.  And then the agitation would set in causing the anger to start to come out.  So I thought this might be the time to introduce this to help keep these things in mind as they approach.

I'm torn between the pros and cons now.  

The pros is that this is helping her to keep these things in mind.  Sure, she may not remember the time or the specific day, but the fact that the doctor appointment is coming up, or lunch with her son and daughter in law is, etc.  

The con to this, at times she becomes very focused on the white board.  Sometimes we figured out what it was that bothered her.  When Lunch was listed with everyone but her name, she thought she wasn't going.  So we learned to make sure to put her name down as well.  But she still stays fixated on the board at times.  But she also would be fixated on the calendar in the kitchen in the past and would easily walk out there maybe 10-12 times in an hour when something didn't seem to set right in her mind.  

In my mind, the pros outweigh the cons at this point as it prevents the feelings of 'you never told me about that' and the anger and frustration that comes with it, especially since she will walk to the kitchen calendar anway.  But I'm wondering if anyone has any suggestions on how to better utilize the whiteboard and cut down her frustration that she has at times?  We have tried to minimize the amount of words written, that results in more questions.  Hence, putting the names and detail that she usually asks about.  We did put future dates going past a week and now limit it to no more than 7 days into the future to limit the amount of info, but still helping to accomplish the goal of getting that reminder out for certain things that do bother her when she doesn't remember.  We are also adding little things on to the 'today' side, such as go for a walk, go to store, etc.

Any tips and pointers that you've tried are welcome. 

 

May flowers

If the board alleviates her confusion about upcoming events, I think it is a good idea. We used to set up reminders on a calendar for my FIL in earlier stages. I’m the earliest stages he wrote everything on post it notes. He literally had hundreds of them around his house, and most of them were about the same thing.  With the dementia progression, he became obsessed with his calendar and frustrated because it took so long to process the meaning of the written language. It was hard work, but as soon as he walked away it was out of his head again, so he would go back to it. He saw it as something he needed to remember but couldn’t.

It was frustrating for him when we told him of things in advance too. He knew something was happening but could not remember what, so he would become fixated on it and ask about something repeatedly on the days leading up to any event.

Now we just tell him an hour before we do anything out of the routine - just enough time for him to get ready. It has been much less stressful and no time to obsess over it.

Everything else we do is routine, meals, walks, activities are the same time everyday. He has that routine down. I am starting to adjust it slightly so it will fit the schedule they have at MC as he is moving soon.

Teresag56

I have tried both calendars and white board with my mom and not much success. She too just gets fixated with the calendar if it has any info written on she will go back and forth looking at it and the white board she paid little attention to it..she does not like post it notes either...she does best if I just tell her the morning of the event taking place that day. I can tell her a hundred times the night before and she will forget. Hope you more sucess

smbren

Thanks May flowers and Teresag56

 My mom had post it's as well for a while.  Same thing on multiple post it's left everywhere.  Somethings we did stop telling her until the morning of as she would just get excited about it as it was advancing. But as things continue to evolve, I'm finding it better that it doesn't seem to be a 'surprise' to her, hence trying to keep the upcoming week a bit more into the memory.  That's the pro to the whiteboard as it does seem to work. 

She does not update the white board herself very much, but that's ok.  She had also stopped doing the post its for the most part.  So between myself, my father and my sister, we update the board.  

The con of the board is just how she seems fixated on it at times.  It seems she gets confused and even frustrate. I want to try to alleviate that a bit more, but I don't want to get rid of the board as the agitation and anger that comes when she feels something is just coming up that she wasn't told about it significant, so keeping that at bay is important and this helps tremendously.   

My mom has had extreme agitation to the point of yelling, screaming, slamming doors, even throwing things. To the point there were times that safety was a concern.  She is on anti psychotic and depression meds which helps, but rather than increase meds we are trying to also alleviate the points that seem to stress her and one of them is always feeling that she isn't told about things and feels now it is time to go to the doctors, now it is time to go to your son's for dinner are all things she wasn't told about.  The board helps to keep these things in her memory though she may not recall when, but the topic is there, so she doesn't just have that feeling of being told where to go and what to do and she feels a bit more involved and in control.  We do minimize the look ahead for the week to only things we think we have to give her more time to think about.  Like the doctors.  But a social thing might only pop up 2 days before.  So we are trying to be smart about how much info at any time we put on the board.  One trigger for her is control, or loss of control, so giving her the info I believe makes her feel she is in control and involved with what is upcoming. 

M1

Hi smbren, sounds like you are doing the right thing to try it and adjust as she responds.  We went through a phase where my partner would try to keep a calendar and write everything down, but then she started missing appointments because she couldn't remember the date or what day of the week it was.  So a visual and written reminder didn't help.  And then trouble with her medications started--she takes a bunch, and when she was herself, she just kept the bottles in her vanity drawer and could get them herself whenever they were due--some morning, some at night, and some for pain (she has scoliosis and rheumatoid arthritis) as needed.  But then she started having trouble with that, so I got a pill box and started setting it up for her for the routine ones (the as needed still remained in their bottles).  But then she started having trouble remembering the day of the week, so I got her a daily calendar (one of the annual ones with pull-off pages) for her bathroom, that had the date and the day of the week.  But then that didn't help either, and she was either missing or double-dosing, so I had to take the med box away, and the pill bottles, and now keep them in my bathroom where she doesn't get them, and I give them to her.  I would say that the visual reminders stopped working in stage four.  Now she can't keep a calendar, and cannot use a telephone directory, or anything written:  good example, we have a guy who bushhogs our fields, and she keeps asking me for his phone number so she can "put it in my book"--it's in there twenty plus times already, and she still can't find it or use it.  

So depending on what stage she's in, there may come a point at which she can't process what's on the board, regardless.  The concept of a week may go away, so that what seems like a logical timeframe for you doesn't really work for her.  We go through the "but you didn't tell me that" all the time.  It doesn't help to remind her that we did in fact have those conversations because they just don't register.  I don't remind her of appointments etc. until the night before or the day of.  There haven't been many things like dinners, etc. because of COVID, but those don't register either.  I wish there were a clearcut answer, but there probably isn't.  If the board seems to bother her more than it helps, maybe time to back off.  Or go to just putting today on it.  Or today and tomorrow, if that's a concept that still registers.  

smbren

Hi M1

Thanks for the info.  Yes, I think we will slowly go to just a daily in time.  For now, I'm trying to keep at least a few days for the pros I mentioned and it does seem to be helping.  But I do know with time, we will have to adjust that a bit.  Prior to her being on all of the medications, I didn't give her reminders about the doctors and stuff until the morning of, but things were different at that point.  It's ever changing, isn't it?  Know that control was an issue for her, mostly coming from delusions and paranoia, I'm trying to give her a sense of control of the schedule rather than navigate her hour by hour, which will come in time. 

Some advice I can give you about the medications.  I ended up getting the Hero device, a pill management machine.  While I manage the schedule, dosage, refilling pills, etc.  My mom takes the dosages as the machine tells her to, and gets notified on her iphone (she still has but not using much these days) and it can also call.  So in this way, she feels in control and doesn't feel someone is just saying take this now.  And if she doesn't dispense the meds, I get notified.  It is a subscription based service though, but in my mind, well worth it.  If current subcribers pay the same, it's $29.99 a month, plus there was like a $50 sign up fee and a one month trial. If you are interested, I can send you a link as I believe the link gives you a discount, can't recall exactly what they offer through the referral link as I don't really send that out much, but happy to send it as it is a service I use and find very helpful in my situation.  With the number of meds she takes at the moment, even if I'm giving her the meds, I may keep the machine as filling this up every month to 2 months is so much easier than a weekly pill box that you can possible make a mistake with. 

zauberflote

I'm late to the party as my response wouldn't post yesterday, but I salvaged it and will put it in with the discussion just in case it's useful:

 smbren, your mom is in one of those in-between places where she is aware enough to be able to pin her anxiety on something that is actually to happen sometime soon. My mother was more of a free-floating anxiety person most of the time. 

Could you start somehow by promising that you've got the master list at home on your desk and will never let her miss a single thing? Then, on the day of, arrive to visit, discretely check she's fed, dressed etc, and 10 minutes before time to leave look at your watch/phone and fake humorous (very important to me and Mom) disaster mode-- "oh my golly ooops, I nearly forgot that you have a xyz this afternoon, boy am I glad I'm already here to take you! Who gets the bathroom first, you or me?" (We could riff on that bathroom visit for 15 minutes if we were in a mood to play that game) "I promise next time I'll remember better!!!!!"  But, you know, you just can't seem to remember. Don't ever dwell on it except to tell her how dumb you feel for not writing this on your calendar/hand/forehead/whatever. My mom had a puckish sense of humor nearly until the end, which made life easier for me and thus her (or vice-versa, who knows). 

 It might be that she can be reassured by the fact that you will never let her miss something, so she might be able to give up the worrying about it. What you're seeing might (I'm no doctor) mean that she is afraid of missing out but still feels responsibility. Perhaps she could relax about that if you kept reassuring her that you had it all under control and oh look at the bird on the windowsill, what kind is it, let's watch it! My mom derived MUCH comfort every time we assured her that Bro had all her finances under control, and she had plenty of money for whatever (all completely true). "But," I used to say  to Mom, you bought lunch last time so it's my turn today!" Bald-faced lie about her having paid last time, but it kept her happy.

smbren

zauberflote Thanks for that suggestion.  Not sure if it will have lasting effects, but it does seem to be helping.  I've been letting her know I won't let her miss her appointment or be late.  Then reassure her that I have them all in my calendar on my phone to keep track of.  And that her husband (my dad) help me to keep track of them as well. 

This seems to ease her mind for the upcoming appointment that has unsettled her a bit.  But still lets us keep today and tomorrow on the calendar for her.  As she always wants to know what they are going to be doing, so this has become ideal, we don't want to remove it, and it helps ease into the doctors appointments that are never good when I spring on her with just the hours notice and time to go.  As things change, we will probably remove the board and move towards that approach, but for now it's that in between phase that is so challenging. 

I think we're doing an ok job.  I keep being told we're doing good by the doctors and a couple other dementia resources and keep being told to pat myself on the back. I guess I keep trying to do more and make it better for her, but there is only so much we can do and keeping her safe is number 1.  But I am doing my best to make sure she enjoys the time she has with the best quality of life that we can make sure she has.