How to answer why am I here (in MC facility)? Is it ever appropriate to tell the truth?

ReallyScaredSon

My dad and I recently moved my 68-year old mother into a memory care facility.  Today is her two-week anniversary there, and it's already a struggle.  She gets stuck in a "loop" asking questions: why do I have to be here?  When can I go home?  I didn't do anything wrong, why am I wearing an ankle bracelet?  Why are you lying to me?  What's really going on?  Why can't I go home?  Why have you taken my life away?  I felt better than I ever have before I came here.  I'm going to go kill myself!

The fiblet we are maintaining is that she's there temporarily.  We don't know how long, though, we have to wait for the doctor to OK release.  But that's not enough.  She gets so upset, repeating the questions over and over, getting increasingly agitated all the while.  It eventually turns really nasty towards my dad, who my mom blames for taking away her life, for lying to her, for locking her up where she doesn't belong.  This just breaks my dad's heart; they were high school sweethearts with a wonderful marriage; he would literally die before doing anything that might cause her the slightest pain.

It's these outbursts of agitation that led her to the MC facility.  They were happening nearly every night (around 2-3am), and took hours and visits from other family members to talk her down.  It just wasn't possible for my dad to take care of her.

My dad and I participated in our first caregiver's support group meeting (virtually, via Zoom).  Such wonderful, nice people.  But I was almost jealous, so many of the participants had LOs with dementia, but without the aggression and depression that my mom has.  LOs who knew and accepted their dementia, took their meds, and cooperated with their caretakers.  If it weren't for these episodes of psychosis, I think my mom could continue to live at home, and at least have some semblance of her old life.  And, though she doesn't have any short-term memory, she still has her wit: it only takes a quick look around in the MC facility to see that she's different than everyone else.  She's definitely the youngest one there (probably by a decade), and at least two thirds are in a wheelchair or use a walker, where she's in great physical health.

I live about three hours away, so can't regularly visit, but I saw her this weekend.  I witnessed one of these episodes for the first time - before, I think she was always able to reign it in while I was around.  She was just saying such awful things to my dad.  I tried to talk to her, wanting so badly to tell her the truth.  But I've read so many times, the truth will likely only upset her.  I danced around it as best I could: "Mom, you know, you were a scientist, you worked in a hospital lab all your life: sometimes you have to make decisions about health care that are unpleasant, but necessary.  That's where we are.  I know in my heart, and fully believe that dad is only doing what he has to.  It's not what any of us want, but it's what we have to do.  And we just have to wait and see what the doctor says about leaving here."  That maybe helped ever-so-slightly, and it wasn't until her sister showed up and also helped talk her down, that she finally relaxed a bit.

As if dementia wasn't bad enough, it just saddens me so much, that she has this intractable depression/aggression/agitation going along with it.  It's hard not to look at her situation and conclude that she's in a living hell.  How do we put on a smile and try to be chipper and upbeat and make her happy, when we know it's only going to get worse?  And, given her age and physical health, we could be in for a very long ride?

I feel I've consistently read, here and other places, telling a PWD that she has dementia will almost certainly make things worse(*).  But is that always true?  I also know that every case is different; there are similarities only in the very broadest sense.  So has anyone ever told their LO about their dementia and had it improve things?  I can't help but feel my mom's case is already a bit of an outlier.

(*) Edit: originally I mistakenly wrote "work" instead of "worse".

SusanB-dil

oh, my - so sorry for your newest situation.  all of this is so hard.

I think telling them depends on them.  mother was an R.N. nurse and she knows, and at first, we could talk with her about it.  she is beyond that stage, now, and conversations are on a loop, but only about 'how are you, how is J, I like my room, the people are nice...'  repeat.  then repeat again. and then a few more times. brother set up her phone so she can only call certain people.  so I hear this same conversation A LOT... that's ok, we just deal.  prior to this, she was actually able to tell us what she felt like when she would get up in the morning. she said there was a big void, like, she knew she was supposed to be where she was, but then wasn't sure how she got there.  for a while, it was her own house.  

MIL, on the other hand, has the anosognosia. Right after initial diagnosis, she didn't like that diagnosis, insisted nothing was wrong, so... no, we do not bring it up.

i know a nurse who has done some work with MC.  she surmised that people who are more aware of their body, and their surroundings, are probably more able to acknowledge that there is a problem.

Has your mom's agitation been updated with PrimCare and a neurologist?

so sorry for you and dad with all of this going on.

M1

Rss no personal experience here, but seems like many folks have to literally not visit or really curtail visits in the first few weeks while their LO is adjusting.  Maybe that needs to be the case here.....I would ask them to keep tweaking her meds too if possible.  Keep us posted.

GothicGremlin

How well I know that particular loop - "I didn't do anything wrong, I've been doing everything I'm supposed to, why am I in memory care?"  Just writing that down makes me want to break out in hives. It's hard to hear and hard to respond to, and it hurts so much, so I know how you feel.

Thankfully, Peggy (my younger sister) knows she has Alzheimer's, and we do discuss it periodically. I never bring it up, we only talk about it when she brings it up.  She's also one of the people you mention who takes her meds when she's told to, etc. She's like your mom in that she's the youngest one there, she's younger than your mom by about seven years.

Not to be morbid, but I've read in numerous places that people with early onset (and I'm thinking your mom is in that category, so is Peggy) don't live as long as people who develop Alzheimer's later in life.  Everyone is different, of course. 

All of that said, she's moving into later stage 6 with everything that goes with it. She was really anxious and paranoid for awhile (Dec and Jan), so earlier this month we started her on anti-anxiety meds. This seems to have helped - we'll see how long it lasts.

I definitely keep my game face (and voice) on when I see Peggy. I never let her see (or hear) any hint of worry/concern, anger/frustration, none of that. If I drop that facade then I risk sending her into a loop that is near impossible to get her out of.  I know what topics to steer clear of - and you probably have a list like it for your mom. For me it's anything to do with cats because she's always had cats and wants five of them in memory care. Hahahahaha, no. 

How to deal with putting on that act and dealing with the stress that goes with it?  We all have different coping mechanisms. I have a therapist who I see about once a month, I work out a few days a week mostly from home, and I listen to music every day. Mostly that works, and sometimes it doesn't.

Also, I guess I should add that we moved Peggy into memory care in late October, and there were many, many tears, and a couple of meltdowns. Over time, she got better with it. For her, I think it was close to a month before she calmed down.  But she's told me a couple of times since then that she's glad she's in memory care (she likes the activities), and she even said that she probably should have moved there sooner. Not the typical response!  But again, we'll see how long that lasts. 

It feels like she's on the cusp of another slide, she's starting to forget people, so I'm trying to prepare myself for that.

harshedbuzz

ReallyScaredSon wrote:

My dad and I recently moved my 68-year old mother into a memory care facility.  Today is her two-week anniversary there, and it's already a struggle.  She gets stuck in a "loop" asking questions: why do I have to be here?  When can I go home?  I didn't do anything wrong, why am I wearing an ankle bracelet?  Why are you lying to me?  What's really going on?  Why can't I go home?  Why have you taken my life away?  I felt better than I ever have before I came here.  I'm going to go kill myself!

My dad was like this when he was in the SNF after a hospitalization. I recall a care planning meeting to which he was invited because he wasn't officially diagnosed and his POA was still pending. There was dad demanding of the staff "By whose authority am I incarcerated in this place?" The DON calmly explained that his doctor had ordered it and they had to follow through on "doctor's orders" or we could all face consequences from APS. Dad came away thinking there was some kind of special police charged with keeping old people in line, but it did redirect the vent from us to "the man" which allowed us to be allies and validate how unfair it all was and how we looked forward to him coming home. 

Dad had an ankle bracelet in the SNF and it seemed triggering for him. He was there 7 weeks and they were able to remove it after about 4 weeks as he was no longer exit-seeking there. His MCF had dementia-informed design- all doors in and out were controlled by a numeric keypad that was on the opposite wall. I toured on other facility that had alarms on all but the main door with a delayed opening which allowed staff to prevent elopements.

The fiblet we are maintaining is that she's there temporarily. 

Perfect!

We don't know how long, though, we have to wait for the doctor to OK release.  But that's not enough.  She gets so upset, repeating the questions over and over, getting increasingly agitated all the while.  It eventually turns really nasty towards my dad, who my mom blames for taking away her life, for lying to her, for locking her up where she doesn't belong.  This just breaks my dad's heart; they were high school sweethearts with a wonderful marriage; he would literally die before doing anything that might cause her the slightest pain.

Two weeks in is really early days. My dad only started to settle at about a month which I am told is more quickly than average. We did not elect to stay away from dad when we placed him in MC but I made sure to always visit with my mom in the first couple of weeks and make sure the visit took place in the more public areas where there would be an audience as dad had enough bandwidth to maintain a social facade. Were I not able to do this, she probably would have had to give him time to settle in before visiting. It also helped to never visit empty-handed. I always brought dad a hot coffee, a fast food lunch, snacks, a newspaper or treat when I came. It helped. 

We told dad the MCF was an upscale rehab ("all private rooms") and told him we wanted him to get the best available care. Rinse and repeat. 

It's these outbursts of agitation that led her to the MC facility.  They were happening nearly every night (around 2-3am), and took hours and visits from other family members to talk her down.  It just wasn't possible for my dad to take care of her.

Does her MCF have an affiliated geripsych? Dad already saw a great geripsych before he was placed, and we transferred care to the MCF's person after placement. Both were excellent and kept dad on a cocktail of lose dose medications to take the edge off the anxiety that drove his most challenging behavior. He wasn't sedated or a zombie- and sometimes he would still get agitated- but her responded better to validation and redirection. 

My dad and I participated in our first caregiver's support group meeting (virtually, via Zoom).  Such wonderful, nice people.  But I was almost jealous, so many of the participants had LOs with dementia, but without the aggression and depression that my mom has. 

I am glad you found a good support group. They were life-savers for us. Especially for my mom who ignored my advice but would follow the same advice when offered by her peers.

My dad was always a difficult person and dementia just destroyed whatever filters he had in keeping that from others. He and I never got along, so I wasn't surprised, but when he turned on my mom she was positively crushed. When my dad had dementia, we also had 2 of my mom's sister's and the mother of a friend diagnosed. What struck me was how different they each were. My favorite aunt remained the gentle and fun-loving person she always was, we referred to her sister as the "evil twin" because she was so venomous and mom friend's staid and discrete mom became outspoken and reliably snarky. 

 LOs who knew and accepted their dementia, took their meds, and cooperated with their caretakers.  If it weren't for these episodes of psychosis, I think my mom could continue to live at home, and at least have some semblance of her old life. 

OMG, yes. This was my dad. Everything became a battle- he wouldn't take his meds for my mom, he was supposed to abstain (mixed dementia- one ARD) and insisted on having wine constantly, wouldn't shower, wouldn't eat or drink fluids. Had he been a more cooperative individual, he could have died at home although he didn't have the cognition, executive function or empathy to approximate his former life. 

Specific to the bolded, many PWD have anosognosia which prevents them from being able to sense or comprehend that they have had a cognitive shift or dementia. This is not denial. 

 And, though she doesn't have any short-term memory, she still has her wit: it only takes a quick look around in the MC facility to see that she's different than everyone else.  She's definitely the youngest one there (probably by a decade), and at least two thirds are in a wheelchair or use a walker, where she's in great physical health.

Most MCFs will ebb and flow in terms of what the population looks like if they are designed to allow residents to age-in-place which is a nice way of saying die there. And yeah, I can appreciate that it's hard to see someone who is younger or whose brain hasn't yet impacted their gross motor skills among those who are further along in the journey. There was one woman in dad's neighborhood who didn't look older than 40 but who was very impaired and another who was so beautifully dressed and coifed I assumed she worked there but she was non-verbal. My dad looked awful physically and had delusions and hallucinations, but he could still carry on conversations and read (albeit without much comprehension).

Care needs drive care options. If your mom is delusional and won't allow care at home, she is in the right setting. 

I live about three hours away, so can't regularly visit, but I saw her this weekend.  I witnessed one of these episodes for the first time - before, I think she was always able to reign it in while I was around.  She was just saying such awful things to my dad.  I tried to talk to her, wanting so badly to tell her the truth.  But I've read so many times, the truth will likely only upset her.  I danced around it as best I could: "Mom, you know, you were a scientist, you worked in a hospital lab all your life: sometimes you have to make decisions about health care that are unpleasant, but necessary.  That's where we are.  I know in my heart, and fully believe that dad is only doing what he has to.  It's not what any of us want, but it's what we have to do.  And we just have to wait and see what the doctor says about leaving here."  That maybe helped ever-so-slightly, and it wasn't until her sister showed up and also helped talk her down, that she finally relaxed a bit.

Ugh. That sounds so difficult, but you handled the situation beautifully. 

As if dementia wasn't bad enough, it just saddens me so much, that she has this intractable depression/aggression/agitation going along with it.  It's hard not to look at her situation and conclude that she's in a living hell.  How do we put on a smile and try to be chipper and upbeat and make her happy, when we know it's only going to get worse? 

Dad had mental health issues, too. Likely bipolar according to his geripsychs but a friend of mine who is a clinical psychologist who knows more about him over the years thinks he had a touch of psychopathy in the mix. Medication helped. 

As for visits, it's best to live in the moment. Do what you can to make the time you are with her as pleasant as you can. 

And, given her age and physical health, we could be in for a very long ride?

It's hard to say. There are some who say EO (before age 70) progresses more rapidly than in older people. There are a couple of EO spouses on the spouse board and their LOs seem to be all over the place in terms of the rate at which the disease is progressing. 

I feel I've consistently read, here and other places, telling a PWD that she has dementia will almost certainly make things work. 

Is this a typo? Do you mean "worse"?

If a PWD has anosognosia and is unaware of the losses around memory, cognition and executive function informing them will feel as if they're being gaslit. At best it would be insulting, at worst it would feel disloyal and threatening. 

But is that always true?  I also know that every case is different; there are similarities only in the very broadest sense.  So has anyone ever told their LO about their dementia and had it improve things?  I can't help but feel my mom's case is already a bit of an outlier.

They're all outliers. Every PWD will present differently. I was struck by how long personality persisted in the face of relentlessly progressing brain damage.

Dad's neurologists, both the med school professor who diagnosed him tentatively after a hospitalization for a psychotic episode and the one from the memory clinic, informed him of his diagnosis. Dad had mixed dementia and one was an alcohol-related kind that could potentially be reversible to some degree with abstinence so informing him was critical. While he did recall this information for a time, it had little meaning for him and only served to make him angrier and more difficult to care for. 

Early on my mom, who felt she was justifiably angry with him about the alcohol piece, would remind him of his diagnosis which only served to upset him and trigger an uptick in his worst behaviors.

Good luck. This is hard stuff.

HB

King Boo

If this is only happening when you visit, as hard as it is to hear, having your Dad NOT visit may help.  For the initial adjustment.

That doesn't mean there are not phone calls to the nurses station and check in.

If this is happening at times when family is not there, anxiety medication as prescribed by a Geriatric Psychiatrist can help ratchet down symptoms to be at least manageable.

Know you are in by far the most difficult phase.

You kind of feel like you've fallen down a rabbit hole (at least I did) because rational conersation is no longer an option, only choosing what words you have to comfort as best as possible.

Part of this also involves protecting Dad, possibly supporting him in not visiting as much in the early days.  Or hiring a Geriatric Care Manager to do so in the interim which may help Dad deal with not going for a bit.

This, unfortunately, is a phase to be powered through.  You hold it together during a visit and then you go bawl your eyes out in the parking lot.

Better smoother days will come. 

Jo C.

This is a very unfortunate situation that is terribly difficult for the family; I am sorry for the grief it is causing.  In my experience, both professional (RN) as well as personal, it would probably not be a good idea to use blatant truth as to why she is where she is.  That cannot be processed in a meaningful way; no matter her past capabilities prior to dementia, her brain has been severely impacted by the dementia. She no longer can reason, process, or have adequate judgment to realistically grasp the ideas and would probably only cement in the negativity of it all as well as distrusting family more than ever. ( Just one person's opinion based on personal and professional experience.)

Early on, I did discuss the factual dementia with my Loved One (LO) hoping kindly presenting the reality would help with the irritability and often agitation, only to have that blow up big time for quite a long time and made things even worse.  Never did that again.  A therapeutic fib is not a moral lapse; it is a kindness for a deeply compromised LO.  Also, do look up the term, "anosognosia," often, a LO will have this condition which does not permit them to see what the actual situatoin is; the denial is hard core on top of the dementia with that no matter what you would say. Again, has the capacity to make things worse.

I also had to learn to deflect and refocus conversations instead of permitting loaded conversations to continue on and on trying to use logic when my LO was not able to process logic any longer; it was all about the emotion in the instant for the LO.  You are trying to kindly use logic in an illogical situation because that is your reality based on a healthy brain; but it is not hers any longer.  We must enter our LOs reality beliefs because they can no longer enter ours.  I also had to learn from the nice people here how to acknowledge LOs feelings but not making them worse.  Sometimes just had to use those fibs and then refocus as much as possible onto some other thought or even going to get coffee and cookies with my LO or whatever to get that negative tape to stop running.

Sometimes, if  behaviors were over the moon and nothing helped, it did not help to stay in the LOs presence.  One has to know when it is time to leave the area using an excuse, (never telling the LO that they are causing one to leave),  rather than reinforcing the behavior by staying and being the irritant that is in the LOs presence at that period of time.  One does not have to make their visits long; if the family members presence is generating upsets, then that person or persons can choose to not visit for awhile, or to make short visits only, etc.  You get the idea.

NOTE:  I have read your Profile and was surprised to see there is no diagnosis re the dementia.

Has your mother been seen by a dementia specialist?  Having an accurate diagnosis for the specific type of dementia could be extremely helpful. The approach and understanding would be helped by knowing what one is dealing with.  It is importanat to note that treatment for one type of diagnosis may be contraindicated in another, so the accurate diagnosis is key to success in treatment.  It may be that your mother possibly has one of the other dementia diagnoses other than Alzheimer's; such as a behavioral variant of FrontoTemporal Dementia, (FTD), or other dementia type.  

Your mother is still in the adaptation period of her admission to care.  There may be the possibility that for a short while she not have visitors so she can process her adaptation without the focus of lashing out at family when they come in during early days.  You can discuss this with the nursing supervisor.  It is not abandoning a LO; that is not so at all for your caring family.  One can have one person assigned to call each day to see how she is doing until visits can commence if that is thought to be a helpful approach.

You can also request a multidisciplinary care meeting with staff and family.  In this, the supervising nurse, the social worker, activities director, dietician, PT, an aide, and other support staff meet together with family - should be no more than two family members.  Problem issues are discussed one by one and a plan of care put into place that goes into the daily care plan for all staff to follow.

I am with your mother re that ankle bracelet. If she is in Memory Care, they all are locked units where a patient cannot get out. If I were a patient, that ankle bracelet would certainly be a big agitation and irritant to me and be a constant reminder of what I was putting up with and that things were really off.  My LO was in MC in two different settings and did not have to wear an ankle bracelet at either facility; thank goodness as that would never have been acceptable and would have agitated her to no end and really have ratcheted things up.  You may want to address the necessity of this with the DON.

It also may be that your mother would benefit from a low dose of a medication to assist her; she too needs to find peace.  However; to do this best, one benefit from that accurate diagnosis for type of dementia in order to use a proper approach to the behavior based on condition, and that usually is best to come from consulting a dementia specialist.  If she saw someone long ago and did not get a diagnosis, she is farther along in her dementia now and a diagnosis should be able to be made so a specific treatment plan can be made for the here and now and also into the future as the dementia evolves.

Take good care, go slow; it is still early days. Also remember that there is the, Alzheimer's Assn. 24 Hour Helpline at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics and they can be very helpful and very supportive.  They can also give some good input on what you are experiencing.

Let us know how your mother and your father are doing,

J.

ReallyScaredSon

Thank you so much for all the helpful replies (especially harshedbuzz and Jo C.)!  Such a wonderfully supportive community here.  My dad and aunt do not post here, but I do send them links to the threads I start, and they read them.  So, know that you are helping more than just me, and we all appreciate it tremendously!

Answering some of the questions that came up in the above replies:

Has your mom's agitation been updated with PrimCare and a neurologist?

 She's on a battery of meds that started about a month ago (she's now two weeks in MCF, and before that, two weeks in the hospital after a 911 call): memantine (Namenda) for memory, fluoxetine (Prozac) for OCD/anxiety, mertazapine (Remeron) for depression, quetiapine (Seroquel) for mood stabilization, and a standing order for lorazepam (Ativan) as-needed for agitation.

Does her MCF have an affiliated geripsych?

I don't believe so, but she does have a geripsych from her two-week stay in the hospital that immediately preceded her transfer to the MCF.  We have mixed feelings about this geripsych: on the one hand, she has 35 years of experience in this specialty, and a reputation as one of the best in the area.  On the other hand: for her last tele-health visit with my mom, she was 10 minutes late, used her personal cell phone and app for the video conference (instead of the official platform provided by the hospital), cut the 30-minute appointment down to 15, and directly asked my mom if she's "still having hallucinations" and "how she's adjusting to the nursing home".  My mom was so agitated she couldn't even focus on the meeting, but just paced constantly.

A therapeutic fib is not a moral lapse; it is a kindness for a deeply compromised LO.

 I've read this sentiment so many times (not just here).  I know it to be true, but it's easier said than done!  My ability to be untruthful (with anyone, really) doesn't go beyond something like planning a surprise party; beyond that, it just feels so wrong.

 

One has to know when it is time to leave the area using an excuse, (never telling the LO that they are causing one to leave),  rather than reinforcing the behavior by staying and being the irritant that is in the LOs presence at that period of time.

 I was thinking along these lines myself.  Mostly for my dad (I cannot visit often, due to distance), that he should have some canned excuses at the ready that he can use to leave if things enter the "point of no return" state.

 

 NOTE:  I have read your Profile and was surprised to see there is no diagnosis re the dementia.

 I just updated my profile.  I originally came to this board when I first discovered that my mom was in cognitive decline (and had started at least five years before I realized what was happening).  She was not diagnosed until about a month ago, when the only way to have these issues addressed was via 911/ER, followed by hospital admittance, when her episodes became too frequent and severe for my dad to manage.  Prior to that, even the slightest hint or suggestion that she see a doc for memory/cognition resulted in one of the episodes.  So the topic was avoided completely.

 

 Having an accurate diagnosis for the specific type of dementia could be extremely helpful.

 I agree, and my dad and I pushed for this with the geripsych while she was in the hospital.  But the doc would not commit to a specific diagnosis; she more or less said there is no way to get a more specific diagnosis.  A neuropsych was brought in; he had to abort his evaluation early in the process, because my mom would not (or in some cases could not) answer his questions, and the questions themselves caused her to get agitated.

  

mommabear for my mom

I'm sorry you are going through this. My mother is also young (74) and I struggle with the same questions and behaviors.  I tried being honest after we got dx before she required constant supervision. Thought honesty was the best policy but it's only good for those who have the ability to process and reason through a situation. To look at my mom you would never have guessed she had such an extreme short term memory impairment. I fell victim to that as well, especially when she would have very lucid and clear moments. It made me think I could be truthful. It made me feel better to be honest with her (I hate lying) but it was obvious it wasn't good for her. She became distressed. If I could provide any advice, I would say fiblits are the way to go. Find ways to change the conversation, maybe she will follow along and forget she wanted to go home (doesn't always work but worth a try). Also, live in whatever moment your mom is in. Many times mine thinks I am her sister or mother (not exactly stroking my ego) but I play along and it makes her happy and also doesn't send her in a downward spiral. Otherwise she is working hard to try to make sense of who I am and/or who I am in relation to her. 

I just moved her to be closer to me and she is also in her 2nd week at the new MC. She was in MC in her home state for a year before I made this decision. Her entire time there was spent anxious and agitated. She had a cell phone at the onset of placement. I would get 20+ calls/day asking about leaving. Everyday she had her room packed. It was exhausting to hear and so heartbreaking.  Moving and changing environments is hard for most people when coping mechanisms are in place but for LO with dementia it just takes it to a whole other level. The behaviors are continuing as well as paranoia. Not even two full weeks there and the exc director told me I may need to hire a one-on-one because she is exit seeking so frequently. Not sure about you or the others on this forum, but we are paying through the nose to have her there to get the care and attention that she needs that I can't provide myself.  They are not at capacity and so are not staffed as such. I was so shell-shocked by that comment I was speechless and embarrassed. Felt like the parent who gets called by the principal regarding their naughty child. 

I keep reminding myself that placement was an act of love. Her safety has to come first even if she doesn't understand it. Glad I found this group. Hope you can find some comfort in shared experiences. 

Jo C.

Have you done much reading regarding dementia?   It would be very helpful for you to do so if you have not done much of that.  There is a lot of good information out there.   I also like the online writing by dementia specialist, Jennifer Ghent-Fuller; just Google the pdf version of, "Understanding The Dementia Experience."  It explains so much about various changes within the brain with dementia at different stages as time moves forward and the disease evolves.

From the behaviors you mention regarding your mother, she sounds possibly like there may be a different form of dementia other than Alzheimer's; do you know if she has a behavioral variant of FrontoTemporal Dementia, or Lewy Bodies Dementia?  The behaviors are florid, persistent and seem to not respond to medication.  Just a question to ask a good Neurologist she may have seen for diagnosis. It may not be so; but just an idea to ask.

As for the truth. That can be hard to deal with for many.  One hopefully, eventually learns that we do not continue to hang our hat on our personal pegs; but out of kindness and effectiveness, we learn to place our hat where the need is for our LO.  The need to "tell the truth," no matter what because it does not "feel right" not to; that is for your benefit, not for your mother's.  To be successful, it is best to step outside one's own internal feelings and reality which your mother is inacapable of processing and step into her reality and work within that realm.  That is where success will begin to come from.  Remember; she can no longer process logic and has lost the ability to use reason and judgment.  She is operating on feelings of the moment as that is where she now lives.

That approach will also enable you to become part of the solution, rather than part of the problem.  Therapeutic fibbing is indeed a kindness to our LOs.  It keeps them calmer, it keeps them from having dreadful meltdowns and often will get them to appointments, to cooperate with treatment, etc. rather than blunt, bare faced truth and fact which only serves to make things worse and drive to upset the LO which shows in their behavior.  We do this out of kindness for someone we love who has a damaged brain.   Why make it more difficult?  Dealing with blunt fact will not help, it will only ratchet the behaviors up far worse which is awful for our LO. 

A quote from Robert Brault, "Today I bent the truth to be kind and I have no regret, for I am far surer of what is kind than I am of what is true."

I had to learn about fiblets the hard way, but learned fast.   I too value honesty.  My LO would go into meltdowns, resist what needed to be done, would mistrust and rail against me to the moon and back.  Then . . . the first time I used a therapeutic fib out of desperation, I thought the earth would open up and swallow me for having done so . . . but . . . . no meltdown, no resistance, calmer, oh my.  Did it a second time when it was necessary to do so with the same results.  I never looked back. I could see the kindness and how it benefitted my LO.

If our LO is driving us to distraction, think of what it is like for them; they not only believe all the false beliefs, they FEEL them and it is a misery.  Therefore, anything that can relieve them is our responsibility to provide including having a dementia specialist, having a diagnosis that is accurate so proper treatment can be put into place as one type of med can be contraindicated in different types of dementia; we see to it that medication adustments are done as necessary and we also use, "therapeutic fiblets," when it is of necessity for our LOs well being in one way or another.  For some time, I also found when visiting my LO to never visit in her room.  Instead, an aide would bring my LO out to the large activity room.  She was calmer there and had no breakdowns; having other people around the room seemed to put her in a more buttoned down state. 

 
So; do think about doing what is best for your mother and not what you feel for yourself; that may be hard at first, but when you see the results it is worth it and then it becomes a necessity.  If that can make a difference, something new and important will have been learned.

Also, if a person is a trigger for acting out, causing agitation, then perhaps visits from that source may best be curtailed until things settle down in this phase of the dementia.  Do have your family watch for triggers to see if they can find out what instigates the severe meltdowns.. 

So hope that things will go better than they have been, and do have family ask about that ankle bracelet; that may be an irritating reminder of things being really off.

J.

For My Sister

GothicGremlin, I’ve learned so much from you. Thank you!!