Thanks for the insight. My husband has vascular dementia and has started popping up at 4 or 5 AM. He doesn't know or understand (no matter how much I try to tell him). I find that one of the most difficult things to deal with!

Rick, thank you for clarifying this from the inside. My husband has had Dementia eight years and has had time issues for five. When he realized he couldn't remember what day it was in the beginning, he figured out that his cell phone gave the day and time. He was so good at it I didn't even know he was having a problem. Now he eats breakfast when he gets up, walks the dogs and then makes lunch (because that is what happens next in his day). I catch him when I'm home and can ask if he's hungry yet. If I'm in town he usually has had lunch by 10:00 a.m. I'm grateful for his memory of using his phone because he still can figure days out when I remind him to look. I know this will not always be the situation. At that time he probably won't be able to use his phone either.

He has a Jitterbug with a life line. He can call me, one other family member and the help line (who calls me if he calls them). It's the only reason I still let him walk the dogs alone. It gives him some limited freedom.

I'm in a support group of mostly spouses who are caregivers. I am referring them to your articles. Our loved ones are mostly in denial or are unaware. It is very difficult to find out what is happening inside them. I think your articles will be beneficial. Thank you for expressing issues so clearly.

Thanks so much for the post, Rick. I knew my mother-inlaw had a jumbled up memory; years ago seem like yesterday. She's 89 & often she asks me what day it is so she knows whether to get ready for school or not. She remembers lots of things but without any sort of time frame. Just explaining it that way, well it makes a little sense of a crazy and difficult thing. She's very smart & maybe I can explain a little of what the problem is to her now

Wow, Rick, you opened another window into your world! You explained what my mom and others with dementia experience relative to nothing being relative with time. The experiences of all of those who've commented here crystallized why we felt compelled to respond to someone who has no time rudder the way that we do. My mom, I fear, is being medicated into this oblivion- for other, valid reasons, but it breaks my heart to feel we are breaking her indomitable spirit! In fact, it is that very spirit that often interferes with ability to live in assisted facilities. Please let us know, Rick, how we can help you or others for whom time has become elusive. What do we say to show empathy and compassion? This issue reminds me of the "non-24" condition some who are not sighted experience that interfered with sleep.

Very good article. Mom has not been able to tell time since before she came to stay with us. According to my nephew she would get up in the middleof the night and start getting ready for the day. It wa still dasrk out. Nephew would tell her to go back to bed. She started that here. Told her if it was darkout don't get up. Works most of the time. My daughter gave her a clock with digital numbers 2 in high with a yellow glow. The red seems to blur and is hard to read when ur farsighted. I tell her not to get out of bed (unless to go to the b/r) till it at least says 8. She no longer understands 8:15, 8:30, 8:45. Does it work, a lot of the time. I don't tell her anyone is visiting or she has an appointment until its time to go. Like u said, u can tell her 3pm and at 1pm she is wondering where her guest is.

This article is so very true-- know one realizes that a dementia patient
lives in their mind ( what ever comes to mind at that very moment)
My sister has Alzhiemer & every time I visit she says the very same thing( I see you are getting fat) I could lose 30 lbs & she would still say the same statement.Itease her & say ( I see you have not got any fatter) LOLShe only weighs 90 lbs .When she began getting sick she was 140 lbs.
She remembers me when I was a teen and weighded 97 lbs.
hershort term memory is gone.She can't remember tree days ago.She knows me
because she sees me all the time.She does not ever talk about her friends any more.A sad disease to have.

Sorry for the form of my post - topic is so personal and also has such a history of mistaken communication and issues around help, both professional and family - where reference points are assumed to be the same for all, but they are not. A tall person has different reference points than a short one. Left handed person uses different reference points than the more universally familiar right handed one.

Sharing life involves learning the current reference points of others, and helping those in physical decline, through the process of transition to find new reference points at a pace and level of meaning that matter at that stage. But our helping systems focus only on the disabilities and apply medication to deal with anxiety - but anxiety and sadness are the clues to help us recognise life's meaning - it is absurd for people to think that anyone sad for more than a few weeks must need a pill to feel better. We are removing meaningful reference points, not noticing that with a mobile society today, we have eliminated the familiar villagers who used to surround families and add reference points and varied input outside the workplace. Now we live in houses that look the same, but the people change, every few years and we lose people who have had more time to watch and get to know us.

All the best, I agree totally that loss of reference points leaves us adrift - I will add that finding oneself feeling that way, yet living among others who assume our reference points are limited to the ones they have seen or value - is a lonely and isolating way to live. It takes time together to care - not just helpers with physical ailments, or professionals leading activities while medicating away all the individuality, hopes and worries.

Which comes first, the loss of reference points or the dementia? The article holds much truth, and it's a valuable reminder for all the young people who say, "oh don't worry about forgetting, I forget things too!" Annoying to hear such lack of focus on the other person's worry, for yes, with those who fear dementia, it happens all the time. But it does happen to people when they lose their reference points and the ones who are still mobile work to choose and implement new reference points. Yes, go months on end without work days, staying at home, if you can't read, then you compare yourself to others around you who are rushing off to too many reference points to handle transitions with grace. It helps a home bound elder to have outside help or companion to take them our, twice a week - not just outings, but reference points, in a manageable way. To help us organize, reference points must become rituals, routines, at our pace. Trouble with so much care FOR a patient, in nursing homes and even focusing so much on a medical focus, involves helpers who track the reference points, then removal of struggle is left to professionals. On mood medications, life is pretty much similar - helpers think it's better because it's "up" more often and manageable, but I find it vacuous. Part of dealing with reference points is rising to the occasion, sometimes with struggle, and the effort shows each other that we care. But fast people don't remember why they need the care of those slowing down. Using meds to remove the worries, instead of keeping someone company and helping them contribute their wisdom and what energy they have, to resolve them more regularly, shows care and meaning, in an effort to callibrate human attention even with a slow person, and professionals and even families feel better if they are more often "up".. Adding regular meds to take away the struggle, also removes the need to meet reference points - it's now the job of others to create them FOR patients, so now, fog replaces clarity, and reference points exist but do not require the same engagement, and the patient becomes a patient..

Rick, such a great article! Mom is having so much difficulty with time now, and your explanation and description of what time is like for someone with Alzheimer's is very helpful. Yesterday was one of those rare occasions when mom went shopping with me for my sister's birthday gift. Two short bus rides one way, maybe half an hour to 45 minutes in the store, 2 hours maximum. However, according to mom, we had been out all morning and spent hours in the store. She even converged our upcoming trip to my sister's in another town with the shopping outing and thought we were coming back from there. She has no concept of what day it is, even when I tell her. She has it in her mind that it is, usually, Sunday or Saturday. Even when I show her the 24 Channel with the date, day and time, she is unable to process that information. As you say, no point of reference. Is there anything that helps orient you to time? What are the most helpful and least helpful things we can do to someone with Alzheimer's as grounded as they can be?

Yes..time is what I have run out of with my husband.....his mind is as you've described and I have finally accepted I cannot trust he will ever recall what he has agreed to...even 2 secs ago......so since its just us and no family nearby and all friends are working...I will place him in an afh. Hes actually agreed to go because hes believing it would help me and he wants to be helpful. So im lucky and grateful he is cooperative in this way. So hard to watch him decline. He was a vibrant man and I love him so much. We've been together for 21 years and married for 20. I will always love him.