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I've not posted a question before, but have followed many responses and found them helpful. My mother recently entered Memory Care (5 days ago). Monday/Tuesday went well, she participated, sounded good Tuesday when I called. Then Tuesday night she was "up all night" agitated, screaming and wandering the hall. She fell yesterday in another resident's bathroom and has been agitated today. They've given her an anxiety medicine helped for a little bit Wed night, but not last night and she was agitated again today.


She uses a wheelchair and doesn't get around easily due to prior history of lymphoma and muscle weakness and recent history of brain lymphoma and radiation. She is unable to see things to the left (vision cut) and hits doorways, obstacles. She is unable to control her left hand well, often she'll reach for something only to miss it, or the hand moves on its own. They asked for bio and history. I included coping strategies we've used since January when she became delusional wanting to "go home", insisting this isn't her house.... She still asks to be taken home at times during the day, but has been fairly easy to distract/redirect. When I asked them if she's asking for anything in particular, or if she responded to hot tea (one of the strategies), they seemed surprised, they hadn't read the history yet. The other things seemed a surprise as well. But once she's escalated, nothing much helps... They've suggested 3 days before a visit (window visit with "safe hug window") to give her time to adjust. They've started her on an anxiety medicine that hasn't helped much, so they'll ask for something else. She was on a low dose of Seroquel at home, nothing else needed.


I'm frustrated that she's trying to express a need they're not 'hearing', that they've not read her history to find how to redirect her, that she's able to get into another's bathroom without them knowing? I talked to her Tuesday, she sounded good. Briefly yesterday (Thurs) when she said "I'm about to pop! I've got to go pee!"... so I said, call the caregiver and go!... The staff respond to my e-mails, they seem like they are sharing info with each other, know what she's done in last 24 hrs etc. It was a highly recommended facility that is the only one we saw that is w/c accessible, a plus to help her stay as functional/independent as possible... I don't know how long to give it before we say enough! and bring her home (to same old and progressively worse situation?)... and afraid they will say enough! and tell us to come get her they can't handle her needs.
Sorry this has been so long....am I asking too much? too soon? is meds to calm her part of the process and it'll work out? I don't want her sedated just to keep her there. She has deficits and memory loss but wasn't totally out of it...

update on my earlier post of June 5, and thanks to all for the answers to that post: June 6, my mother had a fall from the toilet, hitting her head, laceration needing staples. ER/ CT scan subdural hematoma- didn't need surgery per neurosurgery. hospital stay until June 11. In the first week (one posted about) my mother was in the unit, she went from minimal assist transfers to max assist of 2 to "try" to stand at edge of bed.... it was disheartening. She had diaper rash (probably from sitting all day), and other signs of what I thought poor attention... I talked to the director about my concerns, what I was seeing, which she was unaware of... She voiced concern that the geriatric psych NP had prescribed medicines and changed dosages that were contrary to our conversation... My mother returned to the memory care into another wing that provides additional staff and supervision. Her medications were prescribed (per hospital MD) back to what worked at home, and is now taking Melatonin at bedtime to help her sleep (amazing the difference it made!)... She is now "adjusting" and "participating" and "sleeping well". I appreciate the suggestions to give it time (I don't think time would've worked in the first unit), and am trying to glean what information and details I can about the medical component, without alienating the staff. I still don't have any perspective or understanding of their daily routine, how she's reacting or "participating" in activities, or if/when she gets upset or not. One caregiver mentioned, "Oh, you're Donna! She wanders up and down (in w/c) calling for Donna!)... which maybe she just needs a phone call to answer where I am? ... Anyway, I am trying to relax, watchful for problems, trying to learn to trust them... difficult after that first week... Yes, there are several behaviors that we observed at home, those don't bother me as much as the idea she's 'looking' for us and feeling abandoned. At first it was day by day, now I think I'm going week by week... progress!
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Reply to Donna1898
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It's nearly impossible for the staff of a memory care ALF to prevent residents from wandering into other resident's rooms & bathrooms. I worked at such an ALF for 7 months and saw it constantly...........unless the resident locks her door RELIGIOUSLY and wears the key around her neck, someone is likely to get into her room and either take things or root around in her stuff or even mix things up in the bathroom (if there's a shared bathroom, especially, they will mix things up in the cabinets). That's statement #1.

Statement #2: Dementia is a volatile disease; it's tricky. One day is not like another. My mother lives in a Memory Care ALF and has moderate dementia & is wheelchair bound herself. She was on a terrible bender for a few months, agitated, aggravated, confused, miserable (more than usual) ..........just dreadful in general, asking when I was coming to pick her up, etc. Part of the issue was a new medication her doc was trying for pain control, Cymbalta, which screwed with her BIG time and caused more issues than Newsweek. That took 6 weeks to resolve, what with weaning her off the meds and everything. But my point is: dementia is unreliable. It's always changing face. For the past 2+ weeks now, my mother is happy as a lark (for her) and not very confused at all; almost back to 'normal' even. So go figure. Some days she loves the MC, other days she hates it.

Give your mother a chance to acclimate. Don't jump in to 'fix' things..........some things can't be fixed here, let's face it. If you say 'enough' and take her home, then what? The definition of insanity is doing the same thing over & over again and expecting a different result.

If you feel your mother is SAFE where she's at, that's good enough. She's fed, she's showered, she's entertained to some degree, she can't escape and wander the streets. She's dressed, she's interacting with peers her own age & in the same boat she's in. She has a team of people working 24/7 to help her, right? Leave her alone. Let her be. Allow the facility to help her adjust w/o you jumping in to fix every single problem she SAYS she's having. With my mother, most of her problems are made up. I call over there to fact check EVERY THING SHE SAYS, and 90% of it is a lie. Keep that in mind.

If your mother is 'ready to pop' because she has to pee and doesn't call for help, she'll pee herself and then an aide will clean her up. That's the worst case scenario, right? If that happens a few times, she may 'remember' to call for help BEFORE she pops. Or, she'll start wearing Depends as 95% of them do, if she's not doing so as yet. The staff is very used to incontinence issues. My mother pees the bed 3x a week at least and they change her linens without issue.

In fact, the staff is very used to all sorts of histrionics from residents. It's what dementia DOES. Unless your mother is beating others up, I wouldn't worry too much about her getting kicked out. We had a resident who ATE another resident's hearing aid and was not asked to leave. Another resident regularly defecated on the activity room carpeting or on the upholstered chairs early in the morning & was not asked to leave. Another lady screamed bloody murder every time the CNA changed her Depends.....for the entire time. And she was not asked to leave either.

Just try to calm down and not micromanage what's going on over there. Stay in touch with the staff, of course, but trust that they DO know what they're doing as they came highly recommended. Say a prayer and then let the rest of it go while your mother adjusts. Get her doctor involved for more anti anxiety meds to be prescribed on an as needed basis if necessary.

Wishing you the BEST OF LUCK moving forward. I know how gut wrenching all of this can truly be.
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Reply to lealonnie1
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Donna1898 Jun 24, 2020
Thanks, some very good points...
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This is a strange place for your mother. The Dr. can give a little Ativan and it deals with anxiety. The facility does not see something "new". I am suprised that they have not handled it and are just giving you info. See her daily to monitor and get to "nursing director" if you are still concerned, do not put it off.
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Donna1898 Jun 24, 2020
The facility is closed to visitors. They allow 2 'window' visits per week. That first week, no visits although I called a couple of times. This time, since return, we've had better situation.
Ativan, she's sensitive to. 1/2 dose will calm her. a whole dose puts her to sleep. That plus the increase (doubled) of her Seroquel seems to have made her agitation worse. She's back on baseline meds now and doing better.
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Two suggestions -
#1 This is NEW TO HER - she may take a minute to adjust.
#2 Check for UTI.
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Reply to Llamalover47
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It takes time to get used to a new "place." It takes time for the staff to learn her history and what works. Most staff are working very, very hard right now - blame COVID - without a lot of time to read your mom's files. Be patient. Give her a couple of weeks to settle in. Be generous with "tips" and stingy with criticism. She should settle soon and do better.
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Reply to Taarna
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There is no easy answer for your mother’s situation. There is no pill that is going to care all of it, and every pill has after effects. Time is the one thing that will change things. Discuss your concerns with the facility’s physician and director.
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Reply to Ricky6
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A new, unfamiliar environment can cause agitation and dementia episodes to increase. That may resolve in time and your mother may not need the anxiety meds or high dosage recently used. Natural remedies are safest but most facilities won't bother with them but go straight to pharmaceuticals which usually make things worse or just sedate our loved ones. Also, check for UTI. If holding urine, that can cause UTI. Why was she placed in memory care to begin with? Good that you are keeping close watch on her behaviors and care!
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Reply to renoir
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Donna1898 Jun 24, 2020
Thanks, after that first week, she did have UTI, mild. and yes, I think the new meds made things worse, not better. Her background of brain lymphoma/radiation has left her now with late effects of the radiation, increased weakness on one side, visual impairment, and inability to know where her body is in space (ie is she over the toilet or to the side)... transfers were becoming more challenging and my father had gotten to unable to deal with her emotionally or physically. ...He has issues of his own as well...
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If it gets really bad and no uti ask if she can be put on marinol (synthetic marajuana)
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Reply to peggyh
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Ask them to check her for urine test to check for infection. Very common in facility setting and causes all kinds of changes in behavior and mental perceptions. As for her telling you she needs to go pee like she's going to pop - that might also indicate infection OR it can indicate they don't come quick enough to help her get to the bathroom. That was a huge issue at more than one rehab for my mom. Delay in toileting creates the next step facilities take - putting people in diapers and eventually the brain no longer recognizes that peeing/pooping in your pants is not normal to what you have been doing all of your life.

The sad part about not being able to go inside is the lack of your own observation. As for the history you wrote up, you may have to ask for a meeting with all levels of staff involved. You took the time to give them her personal quirks and resolutions that worked for you and they need to review it immediately to ensure everyone is aware of what worked for you. I also wrote up a pretty detailed history for my mom and NO ONE bothered to look at it. One of the nursing directors even told me they did not want the history I wrote up.

She is in a new place that is totally unfamiliar. She may have had mental issues at your house but as they came and went, what she saw around her was familiar. Don't allow them to sedate her to a state that simply makes their job easier. Ask for a meeting and ask them to tell you what they have tried to calm her. If you don't hear any of the suggestions you gave - there you are. They have not adequately reviewed the info you shared. Review it during the meeting.

Lots of facilities get good reviews, but they are based on the needs of their loved ones and may also come from people who simply moved their loved one out of a personal home into a facility and never really got involved with the care. The loved one may just have continued to be out of sight and out of mind. When you are more involved with care prior to facility, you KNOW more about your loved one. Don't confuse good reviews with good care - not always the same
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Reply to my2cents
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I understand your concerns but as long as the facility's care givers are open and responding to your emails, I would encourage you to work with them to stabilize your mother's situation. It takes weeks, not days, for an elder to adjust to a move and change in method/schedule/environment. The further along she is in the dementia journey the more difficult and more time often needed for the transition.

I understand it's difficult to know some of your mother's issues are directly related to the care givers not readying the history you provided. But consider many LTCs are resource stressed at this point. The history may not have been provided to the hands on care givers yet. I suggest if there's an issue covered in history being discussed in a email, attach the history to the email and reference the particular page and paragraph covering that subject.

You can request a care meeting be scheduled where you would have an opportunity to bring the history up too.

I would give it at least 4-6 weeks to begin to see significant improvement. A lot of anti-anxiety medications take 10-14 days to reach max effectiveness. Long term your mother is most likely better off with the socialization opportunities and multi-care giver environment of a facility.
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Donna1898 Jun 24, 2020
Thanks!
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