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My mom has been in an AL facility for two months she has undiagnosed dementia and can be confused about what day it is, and what time of day. The past few days she has been really confused about time and has missed meals in the dining room. Even though she has a clock that tells the time, date, and even the time of day, she is unable to process if it is 11:15, time for lunch. Yesterday, she had nothing to eat until I called her at 2:30. I told her that she needed to go to dinner (starts at 4:15). She said she would do that. I found out today that she went to the dining room way too early where they were having an activity and serving watermelon. She told me "dinner was bad, all they had was watermelon." So, she didn't even realize she was at an activity. She has food in her apartment but if she is not hungry, she won't eat. Some days are better than others and she manages to get to the dining room on time. I've already talked to one of the aides and they really aren't able to remind every resident that it is time to eat. So, now my plan is to call her at lunch time and at dinner time and tell her to eat. I would like to keep her in assisted living as long as she can stay (rather than a higher level of care) but am worried that she will end up in the hospital because of not eating. Has anyone had this problem??

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Freqflyer, that's exactly the situation I was in. Calling mom at mealtimes, making sure she went and upset when she would answer the phone because she chose not to go. And she has a thousand excuses so it's not always the dementia. "I'm not dressed, didn't have a shower, nothing sounds good, not hungry..."
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08/25/16.... since I past posted on this thread, which probably was back in June [the date/time stamp is now gone from the postings], I moved my Dad into Assisted Living from Independent Living, same complex.

Where my Dad lives, Sunrise Senior Living, an Aide comes to his room and gets him ready for the day, and later returns to take him to the main dining room if Dad hasn't already started to head that direction. Same for lunch, and same for dinner.

Whew, what a relief as when he was in Independent Living, I would call him at 4:30 to remind him to start getting ready for dinner. Then I would call back at 5:15 to make sure he wasn't in his room.... if he answered, my heart sunk, as he hadn't gone to the dining room yet. Now I don't need to worry.
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ALG - the other thing that comes to mind is hospice. If when the time comes you are likely to want to use hospice - which I highly recomend - ask if the NH will allow outside hospice care. Most do as its additional help. My brother and I were determined that this last move be - my mothers last move, so hospice could have been a deal breaker if not allowed. I really like my moms NH - it's only a few years old, is privately owned and is small-ish in terms of residents - about 35. The married couple that own my moms place are both RNs and therefore the place is very medically oriented. They have two Drs with one or the other being at the place most days. An interesting detail that helped swing my decision was that the mother of one of the owners is a resident there. All the rooms are private and all have their own bathrooms - which would have been a deal breaker for my mom, had it been different. The only negitive is that it's all private pay - you have to prove three years worth of resources to be accepted there. However, if a resident runs out of money after the three years they will allow Medicaid rather than force a resident to move. That flexibility showed me that while a business - they were caring and understanding.
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And thanks, Rainmom for the list of questions to ask. The nurses at the hospital said to NOT make an appointment for the first visit, just pop in. That's what I did with her current AL place and what I saw on that visit is exactly the way it is.
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The agitation, paranoia and aggression are mainly in the evening, which they are attributing to sundowners. She was not doing that in AL. She did this the last time she was hospitalized, so it is typical behavior for her when in an unfamiliar place. Right now, I'm not inclined to add to her list of meds but I will keep that in mind. The kidney problems will be resolved in the hospital. It is her unwillingness to eat that I think will cause her current AL place to not want her back. They don't deliver meals to rooms unless you are ill and she is refusing escorts and reminders to go to eat. So, they probably will think she is a liability. They do wheel residents in wheelchairs but she could STILL refuse that. I will check into the Memory Care rules for Illinois. I was not aware they might have different rules.
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Has she been evaluated to see if medication could help with her anxiety, agitation,etc? It sounds like she is in a lot of mental pain. I would explore this with her doctor. Please know that the delusions and false accusations are common and in no way your fault.

Can they get on her meds while she's in the hospital?

Will her kidney problems require her to be in a skilled nursing facility? Does she have an advanced medical directive?

I know that you said that she could return to her previous AL, but, have they discussed with you how they would handle someone who is disruptive and resistant to care? I had that happen with my cousin and it's not a good situation. When the dementia is of a certain level and they are not able to give her one on one attention, it might be that her level of care would be too much for a regular AL. I'd ask them about it and how to evaluate what type of facility she would get the attention that she currently needs.

In NC, Memory Care AL's provide care for the resident for as long as they live, unless they need skilled nursing care. They can stay there even if they are bedbound, incontinent, handfed and on hospice. So, I felt comfortable placing my cousin there. Regular Assisted Livings in NC have other rules and a resident has to have be able to meet certain abilities like being able to transfer with the help of one person, cannot be double incontinent, etc. So, at Memory Care, there is some peace of mind knowing that they aren't likely to have to go to a nursing home. I'd check the rules in your state to see how they apply to help you with the planning.
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I asked this very question of the Director at the AL where my mom was living. The first thing she said to me was if the place smells of urine - turn around and leave. I have bad memories of my grandmas nursing home from 40 years ago - most NH are no where near what they were back then. The memory that bothers me the most is of residents sitting in the halls in their wheelchairs - just sitting there - almost lines of them. So when I looked for my mothers new home, I looked for that - where the residents engaged? Visit on appointment and if you like one, do a surprise visit - I also had my brother do a couple surprise visits since they didn't know who he was. Hang around in a common area and listen for the call buttons - are they being answered in a timely manner? Find an occupied room that you can pop into - is the garbage can full or empty? Ask to see their calendar of activities - a good NH will have a printed up calendar for residents and family. Ask about visiting times - a good place will allow visits at any time - late at night is the only acceptable restriction - and even then visits should be allowed if you ask specifically. Ask about seeing a menu - how do the residents get snacks? Talk to a couple aides - how long have they worked there? High staff turn over is a bad sign. I'm sure you'll get lots of tips - these are just a few off the top of my head.
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Update on mom. She's in the hospital, due to acute renal failure. She began to refuse to eat in the dining room at AL, and had a UTI. Nearly a complete repeat of what happened in March, which triggered the move from her home to AL. Here we are again. More than her normal confusion due to the poor kidney function. Refuses meds, refuses therapy. Is combative and paranoid, threatens to escape and calls her nurse a "liar and phony". Accuses me of a variety of things. At this point short term rehab is next after release from the hospital and long term nursing home care will likely follow unless she can get back to her previous "normal" state of dementia. She can still go back to her current AL facility, or possibility of AL with memory care but I think that's a long shot. OMG what do I do now?

The social worker has encouraged me to visit the recommended SNFs that will take her for rehab, knowing that she might stay long term.

What do I look for in a nursing home? What questions do I ask. I do NOT want to make a bad decision, then move her again.
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Rainmom is right. I recall in the early days and I was trying to deal with my cousin. We would be in the car and I would be trying to have a conversation.....she couldn't remember what was said minutes beforehand.....I thought I was in the twilight zone. It's so scary and frustrating. I just couldn't figure out what to do. I found so many helpful people here and I learned that my ideas weren't that productive and how I had to reevaluate my expectations when it came to dementia.
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ALG - good for you! When I came here I knew very little about dementia. I asked for help and was given good advice- and I took it - same as you are. There is a wealth of experience here - no need to reinvent the wheel. Knowing arguing the small stuff isn't important will save you hours and hours of needless frustration. You are definitely on the right path!
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Whoops - I see you have it working for her. Glad to hear of her/your success!
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Do they allow you to eat with your mother in AL? Perhaps you can help her make it a habit as well as a more pleasant experience. When my father was in rehab after his stroke, his first meal was unpleasant because of where they sat him. He didn't want to go back. The dietician finally determined it was the company. They then sat him with a charming woman and I would stop in for an occasional lunch/dinner meal (I had to pay) but he actually enjoyed meals. He still prefers a companion with dinner and will not eat unless there is someone there each evening, so we have made that arrangement. He is incapable of mastering the microwave, so least this way we know he eats and takes his medications. Have looked into AL and they have promised they would notify him at mealtime (extra charge). Additionally, there are talking clocks that can be set up (your voice) to remind a person of a specific activity. And you can set reminders on watches if the person knows what the reminder is for. alzstore
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So glad it is working out ALG - it is so nice to hear about times when caregivers have some forward progress or a success of some sort. Even small successes are so important for our emotional well being!
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After several days of meal reminders from the staff at moms AL place, it appears mom is heading to the dining room at the proper times and/or they are escorting her. Today when I called at 2:30, she told me all about what she had for dinner and how windy it was at dinner. She also laughed at herself and said she was wearing the same clothes she was wearing for dinner. I realized she was talking about lunch because today at lunchtime it was windy. She had been sleeping and was disoriented with the time. Based on the advice I've received here on this forum, I've realized it is not important to argue with her and convince her that she is talking about lunch, not dinner. Who cares? She is eating, is in a safe place, seems to be getting along fine and is actually enjoying reading a book and some magazines from the library of her AL place. Who cares if she thinks lunch was dinner? Last week I would have tried to convince her she was talking about lunch, which would have added to her confusion and been upsetting for both of us. Gosh you all have taught me a lot!
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I'd give it more time and see how the reminding works for meals at the AL. I'd ask them to give you updates, so you are aware how it's working, since relying on your mom's reports is not reliable. She may claim she didn't eat when she did and vice versa.

As long as the regular AL works, then great. I still might look around and see what options there are for Memory Care, just in case. I'm glad that I did, because my cousin had to move from regular AL to Secure Memory Care pretty quickly. (Problem arose on Friday and I got her into Memory Care Monday afternoon.) She was needing more and more one on one care, but then she started wandering. Good thing that I had already toured with a Secure Memory Care AL months before and had the application in my hand, so, a quick call and I was able to get her in their door really fast.
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I have another idea. My son has sevear autism - in learning about dementia I have come to realize there are several similar characteristics- one being Visual Thinking. Meaning in part that often people with dementia do well with pictures for cueing and transitions. Does your mom have a traditional wall clock - one with hands? If so, draw three separate pictures of a clock with the hands at 8:00, 12:00, 5:00 - whenever her meal times start. Label each one "breakfast", "lunch", "dinner". Post them on the wall next to the clock. You could even print them on a computer to look more professional. Maybe at the top of the pic put the name of the facility so it looks like a general tool - not just for her. Since it seems you can't count on the staff cueing her 100 percent of the time this could be a sort of plan B. Often people with autism will carry a ring of small pics - a toilet, a bus, etc for communication- but that's problematic for dementia as they may not remember why to look at the ring of pics. Do you think she'd let you hang something like that up in her room?
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LOL. Well, I never thought of just joining in her make believe world! Great idea. It could backfire in that she might think the place is always screwed up but then again, she will likely forget about it tomorrow, since her short term memory is sketchy.
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Maybe they could tell her that meal times got messed up due to maintenance work - and lunch is now. If she doesn't think it was her mistake she might be more willing. Probably more important that she eats at this point.
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So, after several days of clarity, we have a day of confusion again. I called mom this morning at 10:45 and she said she was starving. When I asked her why, she said "I've been in the dining room for two hours waiting for food and there isn't any and the cook is changing lightbulbs." After doing some checking, I found out she was in the dining room too early for lunch and too late for breakfast and yes the handyman was changing lightbulbs because it was in between meals. So, mom is completely convinced "they have screwed up the meal again." Explaining to her that she was early is not working. I understand her brain is broken and a rational explanation from me is not going to work. What conversation can I have to redirect her? By the way, the CNA was in her room when I called and was prepared to help her go back to the dining room, yeay! Not sure how the CNA is going to convince her to go considering she wouldn't believe me. They can offer meal reminders and they can escort residents to meals but mom is stubborn and simply might refuse.
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Yes, paying for the meals and the assistance she needs.
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Just one thing I'd like to add is that you are not just paying for assistance like a reminder to go to meals. Aren't you also paying for the meals themselves?
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I would like to thank everyone who has commented. Today, I discussed my mom's issues with the director of nursing in her AL place. They are going to start meal reminders and escorting her to meals if necessary. This is all new territory for me and your help has been wonderful. Since mid March of this year, mom was in the hospital, then a rehab facility and now in AL. During this time, I cleaned out her condo, had an estate sale, sold her condo and pre paid for her burial. I have POA, and am waiting on veteran's benefits. I have no help in any of this as my dad passed away in 2014 and I don't have any siblings. Everyone on this forum has been so helpful with my questions. I'm sure I'll continue to have more as I'm realizing things can change on a daily basis with the elderly. THANK YOU!
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Yes, I'd if your mom's information is correct. If it's a matter of her resisting meals, then I would have her assessed to see what type of facility is needed. In regular AL, my cousin would resist meals, activities, baths and getting out of bed. She did much better when she moved to Memory Care. They are under much more structure and everything is handled one on one by people who are trained to work with dementia patients. I'd explore that option for the future.
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My mothers assisted living have the aides go to the rooms of those who have dementia and remind them its time to go to the cafeteria. My mom has to be taken in a wheelchair so she wouldnt be able to get there unless someone goes to get her....but even if she could walk there, she wouldnt remember so someone always goes to get/remind her. I also find it VERY odd that your facility doesnt do this for those with dementia, even if its just beginning. I would DEFINITELY speak to the director of the facility about it.
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So ALG, I think you probably have your answer regarding why it's so difficult to get your mom to the dining room - bottom line, she doesn't want to go. If she is like my mom - doing as my mom did, not being able to determine meal times because dementia, over sleeping, not being happy to be there - getting someone to remind her isn't going to be a total fix. You'll start hearing from her that no one cued her when in fact, someone did, that there was no where to sit, or a woman at her assigned table was mean to her, plus the same "didn't like/want what was being served" - even though there were alternatives. It's the same as the variety of excuses to not go to activities. Either she will or won't adjust. If she adjusts to being there - great, she will have some quality of life ahead of her - may even come to like living there, among peers and being somewhat independent. If she doesn't adjust - I'm sorry to say, at some point she will begin to decline and a facility with less freedom, more structure - a nursing home - may be on the horizon. Try as I might, I could never get my mother to understand the consequences of her bull headed behaviors. Of course that was back in the day when I still thought she could be reasoned with - I had no real understanding of dementia. I'm sorry to say you might have a long, bumpy road ahead of you. Please know you can only do what you can do - the rest is up to her, whether she can reason that through or not. You can lead a horse to the dining room but you can't make him eat.
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I agree with many above who believe that AL is responsible for her assisting her to her meals. That's the point of AL. All of the AL's that I know go about the place and gather everyone to the dining room, where they have an assigned place to sit.(Those in wheelchairs are wheeled there and other escorted if needed.) If they do not eat, notes are taken and family called. In regular AL, snacks were taken to the resident to their room or wherever they were on the property. In Memory Care, of course snacks are provided in the dining room under supervision.

I might meet with the director for the purpose of discussing other needs that your mom might have that are not being met. As dementia progresses, her needs might outgrow that facility, but, if it's just meals....I would think that is an easy fix.

I would also double check what your mom is telling you. Can you get independent verification of what she is reporting? She could be eating, but not remembering it.

I might also determine if she still has an appetite and have that evaluated. It could be from the dementia or depression. I'd discuss with her doctor.
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Good luck ALG1447. Maybe after you talk to the director they will take more notice of your Mom. AL weighs all residents every month to make sure they are thriving. If they lose weight, then they have to contact family and make arrangements to get them to a doctor because it means they either are not eating or have something wrong. If your mother isn't eating, they should notice for that reason also.

Truthfully, I expected more oversight - for the money we were paying - but found that unless the resident is having obvious issues, if they are quiet and cause no problem, they don't notice little things like we, the family will, especially if they spend a lot of time in their room.) Also, because of the law, there is just so much they can make them do, if they don't want to. Even if it is AL, residents have the right to refuse to do things like bathe and eat, etc.

I can understand what you are going through. My mother was not social either, was very stubborn partly because she was deaf, she couldn't converse well and that embarrassed her. However, they told me when I wasn't around, she would come to the lounge and just sit next to a couple people she felt comfortable with (one a nice quiet man) and they seldom, if ever, talked. They saw him holding her hand on occasion! Although she would never admit to it, we knew she even went to a couple of activities and just hung around just to have something to do. Due to the dementia, she would get bored, couldn't hear well enough to know what was going on and leave. But that took a few months before she would do that - and she would never tell us herself.
My point is, if your mother hasn't been in AL long, it might take a while for her to adjust to a couple of people she feels comfortable with. Mom was shy and pretty antisocial but even she eventually migrated to one or two people like herself. She sat with a lady at lunch who took her under her wing and often waited for her outside her room to make sure she came to lunch. (Obviously her friend's dementia was not as bad as Mom's)
That would be helpful to your mother when she has one person her age to "buddy". Shy and antisocial people seem to do better going places if they are not alone.
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Rainmom, I was thinking the exact same thing about the confusion--the sleeping/napping schedule and not looking out her window to determine if it is dark out--this is exactly what I was thinking contributes to the confusion and disorientation about what part of the day/night it is. I have also had the middle of the night calls--1 am thinking it was 1 pm. And yes, my mom is not a very social person. She just stays in her apartment and watches TV. When I go for a visit, I get her out of there even if it is to sit on the patio for a bit. Sometimes when I call and ask her if she is going to lunch in the dining room, she will say "they are not having anything good" as an excuse not to go. They have two choices for each meal plus they can always choose the "regular" items. This is TOTALLY a bogus excuse for not socializing. She won't go to any activities either, always saying she didn't know about them or she doesn't like bingo or it hurts her back to work on the puzzle. She is very stubborn and I have to remember that she is making these choices and I can only offer suggestions of things she can do.

Based on everyone's comments, I will be talking with the head nurse this coming week about meal reminders. This is my first experience with AL and I'm not sure exactly what services they offer other than the ones we are already getting. I'm on that and thanks to everyone that has commented about that particular issue.
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About the time confusion - my mom would go through that on and off. Where the confusion started, I think, was because during these periods she was sleeping more than usual. At some point it became "normal" for my mom to be extra confused when she woke. But during these particular points she wouldn't be able to decern whether it was am or pm. I would get calls in the middle of the night with her asking was it 3:00 am or pm or she would call at 5:00am and say "it's 5:00, I thought you were coming by today" - thinking a whole day had passed instead of just starting - fun, huh? I tried to show her the lighted dot on her digital clock which indicated am or pm and also on her computer where the time stamp was but it did no good. Worse was that she couldn't logically figure out to look out the window to see if it was freakin' dark out! But like I said, these periods with time confusion came and went. The other thing that occurred to me is - it would be like my mother to claim confusion about time and meal periods as a way to keep me from nagging her to go to the dining room and eat - mom would rather eat in her room to avoid socializing. Since your moms only been there two months, could that be a possibility? But I stand by my original reply that the AL people saying they can't remind her is sooo lame! As you can see from the other posts, this is something that is routine in most AL communities. I'm sure your paying quite a bit for an apartment that would rent for half the price if it were outside a retirement community - you should be getting more for your money than just medication management.
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Add my surprise to that of the others that someone won't remind her about meals. That not only just doesn't seem right, it seems inappropriate and inconsistent with some of the purposes of AL.

The only thing I can think of to help her remind herself is kind of a rube Goldberg operation: Get 3 alarm clocks and set one for breakfast, one for lunch and one for dinner. Put "go to breakfast", "go to lunch", and "go to dinner" tabs or stickers on each clock. What I don't know though is if shutting off each clock would actually be a reminder, or whether the clocks need to have the alarm buttons re-activated each day.

It's been years since I've relied on alarm clocks and I just don't remember whether they need to be reset after being turned off.

I think part of the issue is associating the time with the meal. You could put up signs, but that might not trigger the association. I'm trying to think of some kind of recording, or bell, or something that would activate like an alarm clock but offhand I'm not thinking of anything.

Are there any other residents your mother knows who might create a "buddy system" and come and get her for meals?
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