Reminders that don't remind.

YooperTom

My spouse is at the point where she functions normally for most things: caring for herself and the house, driving, shopping, vising friends, etc. We create a to-do list every day, and although it's right in front of her, she doesn't follow it. She understands its importance, and knows that it's there, but doesn't do any of the things on the list. It looks like she deliberately rejects everything on the list, but if that's the case, it's a totally unconscious action. Here's an example: She's a gifted artist and agrees that sketching for a few minutes each day would be a brain-healthy activity, so it's on the list. At the end of the day, she hasn't done it and can't explain why. Simply having it on a list that's right in front of her all day does not get her to do it. What's the alternative that will motivate and remind her to do it?

ronda b

Has she forgotten how?

Russinator

I also made a list for DW. Her list is for different events for the month. After reads the list she's said many times (different days) that she has to shower and get ready for our daughter's visit. The visit is on the list but 3 weeks away. Just an example.

Timmyd

https://alzconnected.org/discussion/72932/reminders-that-dont-remind

I know nothing of your spouses condition and wish that she is not on the same path as the spouses of many of us who post here. For my DW, we tried reminders and lists early on. It eventually became irrelevant. It became just a source of more stress and frustration. Following diagnosis, the doctors and social workers seemed to emphasize the importance of accepting decline as inevitable and preparing for it. That was very hard for me and at times, still is. Knowing when to let go and accept a given capacity has been lost is a very hard part of progression.

White Crane

Hi, Tom, I doubt your DW is deliberately ignoring the list. More likely she forgets about it or is unable to process everything on it. People with Alzheimer's lose their ability to initiate actions and forget how to sequence or do all the steps involved in a task. Also, having several things and choices to deal with may be overwhelming to her. You might try laying our her sketch pad and colored pencils and sitting with her for awhile to encourage her. You could also buy her an adult coloring book and see if she would color some simple pictures. You could even color with her. My DH was also an artist but he stopped drawing and sketching several years ago. When I tried to encourage him, he said he couldn't do it anymore. Another thing is having too many choices. I don't know how many things are on your daily list but if there are more than two it is probably too many. With my DH, more than two choices of what to eat, what to wear, etc. was too much for him. Try to keep things as simple as possible for her.

A concern after reading your post is the fact that she is still driving. If she should have an accident, you could lose everything. She could injure herself or someone else. I know all this is overwhelming and my heart goes out to you.

Brenda

Goodlife2025

Hi Tom, we used a list posted on our front door each day. It worked great up until we were in about stage 4 then one day her ability to make use of a list was lost. Due to all the reasons listed above you will likely need to stop the list. I was able to transition to a one item list for awhile but it was more work for me than of value to her.

terei

She has probably lost the ability to comprehend what she is reading. My mom could read a list aloud in front of me, but could not translate it to ‘knowing’ what it said. It sounds to me that your DW’s comprehension is compromised. Lists for her will not help her ‘remember’

SiberianIris

Dementia affects so much more than just memory. As other posters have mentioned, dementia gradually takes away our executive functioning - the ability to plan, organize, initiate, and complete tasks, make decisions, regulate our emotions, and problem solve.

Even though people losing their executive functioning can often still talk a good game and agree they want to do things on the list, it becomes a huge obstacle for them to make the jump from reading items on the list to remember and figure out all the steps involved in actually initiating and doing them in the proper order.

This is where "prompting" can help. Rather than saying "Do you want to do some sketching?" (these sort of "do you want to" questions usually get a "no" because to a person with dementia they are just too open-ended and overwhelming), say something like "it's time to do some sketching" (and have a limited amount of her favorite sketching supplies ready and waiting). Sitting there with her to encourage and help get her started can be helpful. Hopefully, once she gets engaged with it, you can step away if you want.

terei

I will also add that you are still treating your wife as if she has an healthy normal brain. I doubt whether anything you do or say will motivate her to do anything. Her recall may be a matter of minutes and is gone from her consciousness very quickly

Timmyd

I am amazed at how well my DW can read at this stage of ALZ. She has no problem reading aloud. I read that reading can last quite a long time. Knowing what it is she has read, and acting upon that…. not so much….

l7pla1w2

https://alzconnected.org/discussion/comment/242130#Comment_242130

My DW has a pair of mittens that has a hole in the palm of one of them. Every time she looked at it, she would say, "I need to sew that." There was this progression over time:

• I need to sew it.
• She would say she doesn't have anything to do, so I would suggest she sew it.
• I got out her sewing kit and helped pick out a color of thread to use.

She never did sew it. Similarly, she said over and over that she had to fix the button on her pajamas. Finally, after many promptings, I sewed the button on myself. She's in MC now.

You can imagine that the process of sewing a button would be daunting. You have to collect the garment, the button, and the needle and thread. You have to thread the needle. You have to start sewing by securing the thread. You have to go in and out with the needle through the button holes. You have to finish up. That's a lot to contemplate, especially if you can't even conceive of the first step.

SDianeL

your wife’s reasoner is broken so she is unable to read, understand and act on a list. It will only increase her anxiety. You may think she’s still able to drive, but I doubt it. If she has been diagnosed and in an accident you could be sued. Shopping may be another issue she may be struggling with. She also could be vulnerable to scams. You didn’t mention what Stage you think she’s in. There are charts online with behaviors you can refer to. She may no longer know how to sketch. An easy coloring book may be better for her.

harshedbuzz

@YooperTom

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

Dementia is about so much more than mere memory loss. Early in the disease process you can expect losses in executive function, central coherence and the ability to initiate and focus on a task. Additionally, you may also see increased apathy (even around former passions) and a lack of empathy for what might make others happy.

This behavior likely is flavored by those changes to her cognition. She's not making the connection between seeing the list and comprehending it as a prompt to do something. Or she might recognize the prompt but be unable to get started on it. She might even believe she already sketched if that was previously her custom. Getting her to do it will likely mean more engagement around it from you. Is this something you can do together? Perhaps putting her supplies in the car and driving her to a place to sketch or sitting in the studio with her?

Two things about your post struck me. One is the notion of you discussing sketching as a brain-healthy activity. A lot of docs will suggest this sort of thing— puzzles, crosswords, etc— as almost protective. I have yet to see a study that suggests this in any meaningful way. I'd love to see some data behind this old saw. I mean it's great if the PWD enjoys this sort of thing, but I wouldn't expend any effort at making it happen if the PWD isn't happily engaging. If she does draw, great. If she doesn't, why do you ask? Does she feel badly when she can't answer your question?

I wonder, if she's functioning as well as you say, if this isn't a form of willful disobedience. Dad's bristled at mom's suggestions in a way that reminded me of a rebellious teenager. Eating, doing his PT, taking his meds and hygiene requests triggered non-cooperation from him. YMMV.

Driving is something of a unity horse here. Do you drive with her regularly to access her abilities? Also, have you asked your agent if her diagnosis voids her coverage? My policy, and my parents', does not cover a person driving with a diagnosis of dementia.

Another piece to the driving issue is that, in the event of an accident and lawsuit, by the time your wife is deposed and then called to testify, the disease will have progressed, and she may look much more impaired to the judge and jury than she was the day of the accident.

HB

bjt84

YooperTom, your wife has progressed further than you have. She's on a predictable, unrelenting trajectory. Accept that and you'll soon catchup to her. It's a new normal for all of us. I wish for you patience, empathy and compassion.

debbymc4

Thank you all for your words here. This all describes the struggle I've been in. So many lists…so many arguments. My son has been telling me she's farther gone than I admit, and I think he's right after reading this.

trottingalong

My DH has dementia and recently a very close friend was diagnosed. I know lists just don’t work for DH. I was with my friend one day when another friend called her. They were very irritated that she had forgotten an appt and was telling her she needs to start writing a list like she was told to. After hanging up she told me she tries to write lists but isn’t sure where she may leave the list and then doesn’t always understand it. I told her it’s so easy for those who DON’T have memory issues to tell people who do how to get through a day. She thanked me. She thanked me because she felt more incompetent when she can’t follow the expectations of others.