Therapeutic Fibs / Compassionate Fibs
Moving on a bit from the previous topic - I think we resolved a couple things that my mom was upset with basically because my Dad realized he was arguing too much with my mom so she was reacting to that mostly. Now we need to learn how to use Therapeutic Fibs / Compassionate Lying and make them work for my mom. I also think it's possible she isn't really in stage for based on some input my Dad recived from the Doctor but rather stage 3? (This is still not clear but I think she is a bit more "aware" than we were thinking maybe). if nothing else we're in this transitional stage where she is aware enough to feel as though she is "functional" but clearly has memory issues that are causing problems. But any discussion of it results in her going to the worst - "YOU ALL THINK I'M COMPLETELY HELPLESS" this we need to work on.
Somethings kind of work "are you texting your brother about me?" "No that was a work text" or some other thing.
But if it's something she already partially knows about it doesn't really work especially with regard to her schedule or she won't believe it. For example if something was written down on her calendar that we would do X and that gets changed she CANNOT handle it no matter what. it becomes a flashpoint of "you didn't tell me!" — so I guess maybe we should just be saying "you are right we forgot to make sure you knew that" — but then I guess it becomes more of a fight. Yes obviously we need to make sure there is a new schedule provided when things change but it's not always possible and she sees it the next day and flips out. if she wasn't so fixated on having her schedual be exact we'd be in a better place but that's one of her THINGS that always was a thing.
Comments
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I’m glad you are getting some things figured out. It’s not easy thats for sure. Personally I think you and your dad who see her regularly would be the best judge of her stage, vs the doctor. But it probably doesn’t really matter stage 3 or stage 4, it all sucks. I usually found that telling mom about appointments in advance caused her stress. She would get confused about the day or the time (even when it was on the calendar). I eventually just started telling her the day before the appointment. She would be mad that I hadn’t told her before, but even if I had told her she would have forgotten and been mad at me anyway (even if I had put it on the calendar). It’s kind of a no win situation. I would just apologize every time. This way I didnt have weeks of questions about when the appointment was. Is it a monthly calendar she is fixated on or some kind of daily schedule. It may help to cross the days off the calendar each day. Mom struggles with finding the current date on the calendar, which causes confusion. Some people have talked about using a whiteboard with a schedule for the day on it. A monthly whiteboard might allow you to change an appointment date without her noticing. Every person with dementia is different. It can be a bit of trial an error to see what approach works best with your lo and of course the specific situation.
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I'm not sure either way regarding stages - we seem to be in such a weird place right now. There will be another appointment with her doctor about this subject at some point.
Part of the issue is that she was always the kind if person who had a very busy full schedule due to her work so she would alway have EVERYTHING written out and prepared on the paper schedule and she will not let go of having it. It might just be something my Dad has to deal with for now - preparing the schedule and making sure she has a new copy if anything changes and just accepting that she might yell at him about something. He's having a lot of trouble with the "don't take it personally" part due to his own mental health, past history, etc. Trying to change her habit at this point in time just results in her being very angry about "doing less" because to her it means we think she's so incompetent she can't function at all. She wants all the information in front of her so SHE knows she's being told things correctly and can know what is happening and when. She gets upset if she doesn't see addresses on the schedule as another example.
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Google the DBAT assessment tool, it will help you determine what stage you think she is in.
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This right?
Saw that some things feel like stage three a few things feel like stage four … It's just very confusing and obviously there needs to be a conversation with her doctor.
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I was told to consider someone at the last stage they have any symptoms for. People are often not diagnosed til stage 4. I found that mom’s doctor all referred to the 3 stage model, which I don’t think is very helpful as a caregiver. I think the 3 stages just lumps 3, 4 and 5 all together. This is another staging tool. Maybe between the two of them you can get a better idea.
https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/
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@dreamofstars
A couple of thoughts related to your situation.IME, physicians are more likely see PWD as less impaired than they actually are because 1) appointments tend to take place early in the day which is typically the best time of day for the PWD and 2) because many PWD are able to showtime. The latter is when a PWD is able to hold it together for a brief period of time and appear more functional that they are.
IME, sometimes loving spouses and adult children see the PWD through rose-tinted lenses, holding fast to skills that remain and disregarding behaviors as one-offs. My mom did this in spades and along with dad's doctors describing him as at least one stage behind where I felt he was based on what I was seeing, she sometimes misjudged timing for safety concerns and was shocked when he died.
The rule of thumb for the DBAT is that a PWD is considered to be in the latest stage for which they have a symptom/behavior— they don't have to tick all the boxes, one is enough. This was partly what threw my mom, dad maintained the ability to walk, have conversations (of a sort) and knew who we were. This allowed her to feel he was less progressed despite swallowing issues and significant weight loss. TBH, I think his care team at the MCF were surprised when he passed although they had asked about scheduling a hospice referral.
Related to the above, emotional intelligence remains well into the disease progression. For my mom who believed dad would never fall for a fiblet because "he's not that fair along", it became a self-fulfilling prophesy. She was a pretty lousy liar, and he saw right through her. On the other hand, I could lie with conviction and he went for it. I also found it easier to redirect him when he got stuck on an upsetting topic.
Even when a PWD does recognize some memory loss on their own, they seldom appreciate the other dementia side dishes that make supervision necessary— the things like poor reasoning skills, lack of empathy, poor executive function, catastrophic reactions, etc. This is called anosognosia. Trying to convince her that she's got a problem will feel disloyal and lick gaslighting. There is absolutely no reason to discuss her issues with her— work around her back instead.
It sounds as if the calendar is a visual trigger for her. My advice would be different than you've gotten so far— disappear the calendar. Your dad can hide it or keep the schedule on his phone. Mom doesn't need to know about appointments until the morning of. If she asks why she wasn't told, dad could tell her the office called to change it.
Good luck.
HB1 -
I agree with a lot of what you've said. Though working around her back is how we got where we are with her hating my Dad (when she's in her worst moods) and feeling like she can't trust him at all and that there conspiracies happening all around her. Granted I think my Dad also did himself no favors by admitting the full truth of just how much he had been going behind her back previously … (with the initial steps of letting family know how bad of she was etc). So I think we're trying to work out the middle ground of just what we can do without setting off her "you're hiding things from me" paranoia.
He does need to learn how to lie better and what kinds of lies to tell. I think for now he needs to avoid anything around talking to her doctors. Talking to her doctors needs to happen with her involvement as much as possible for now.
I'm not quite convinced disappearing the calendar is the right move in the present time … she would tear the house apart looking for it like she does other things and go off on my Dad about hiding things etc. She's still got her phone as well which has a calendar too that has some of the info…
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My advice would also be to disappear the calendar although I understand you’re not ready. When the calendar and phone eventually do disappear (which they will), you may find that your mom is actually less anxious and everyone’s lives are much easier. You’ll know when the time is right.
Also suspicion and delusions are part of the disease and families must find ways to cope, whether that means different strategies, medication, fiblets, placating, or a combination thereof. Also what works today may not work tomorrow and you’ll have to continually adapt to changing behaviors.0 -
I think once there is a sense of distrust it’s hard to get back. I can see why doing things behind her back may make her suspicious (especially if your not good with fibs), but trying to do something and including her (when she is not capable) is going to cause anger and resentment as well. It’s sometimes a no win. Im not totally sure I understand about her being involved with talking with the doctor. Whenever I brought up concerns/symptoms with the doctor in front of your mom, mom would get extremely angry. It the anosognosia thing. She believes there is nothing wrong with her. She thought I was making things up, going overboard with caution or just being ridiculous. At one point she refused to take medication for anger and anxiety because she said she “didn’t have a dam mood problem”. While living with my brother she had fallen 6 times in 2 months, yet she showered while alone in the house when my brother was at work. I brought this concern up with the doctor to get her opinion (my brother is an idiot and couldn’t figure out that was a bad situation) and mom went through the roof. I eventually found it worked so much better to send the doctor a message (usually through an online healthcare portal). If the doctor told her something she was much better about going along with it as long as she didn’t see me pointing things out to the doctor. I find the whole thing to be a bit of a tightrope walk. There are so many things that will set mom off (thankfully not as bad as before medication). You’ll figure it out eventually.
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The issue is that mom remains furious that dad was talking to her doctor about her and was furious with the idea that he was telling them her memory issues. So that's where the betrayal feeling comes in. So in order to not make her angry he's thinking he should talk to the doctor with her etc. That said he is still sending notes to the doctor and trying to figure out things. I think he just wants to get past this initial problem that he feels he created. Yes in reality it's a function of her own anosognosia he's emotionally feeling like right now he just has to not make her angry (because he can't handle it).
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Have you asked for a med to calm her down? [Your older posts are hidden].
It obviously causes her pain and anxiety the way things are. The brain is decaying , it isn't a matter of moods or emotions that can be over come. She's trying to connect things but her brain can't anymore.
Can you fill the calendar with non stress stuff - and just for that single day . Erase each action when done and make positive comments , "boy Mom you aren't missing a thing ."Can you get a inexpensive tablet and use that for the schedule versus paper- then you can change from your phone w/o leaving 'fingerprints' but she can ONLY see it on that tablet.
The calendar now seems like a helium balloon taking her to Stressville.
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@dreamofstars
Ugh. It's best not to actually discuss the shortcomings of the PWD in front of them.
If the doctor has an electronic patient portal, dad should sign up and communicate symptoms and concerns via the e-chart. If the doc is old school, a short, bulleted list of concerns could be discretely slipped to the person who takes you back to the exam room and asking them to ask the doctor to read it before coming in.
Dad was seen at a memory center where the structure of each visit included us reporting concerns while dad went to a different room for some quick testing. I could report concerns to his PCP via the portal. For his geri psych, I had to use e-mail which is less secure. Related to that, dad was an Oscar-level showtimer during appointments. At home he was agitated and aggressive. When seeking a medication adjustment, I had to make a video recording of dad threatening mom so the doc could see the "real" dad.
IMO, any physician who doesn't make it possible to report symptoms discretely obviously has no idea of the realities of living with dementia.
HB1 -
Someone mentioned my older posts are hidden (does that just mean because my profile is private people can't see the other posts I've made here - doesn't have anything to do with this thread?)
Regarding meds - I think we're working up to that point but neither my dad or I are comfortable with actually drugging her behind her back (I'm not sure how my dad could accomplish that in her current state if seemingly being aware as he doesn't prepare any of her food or drinks - which again will obviously need to change at some point but not now). This is something we will discuss.
Regarding talking about her behind her back to avoid confrontation - one of the things that happened this week is that my Dad reported some issues to her doctor, the doctor scheduled lab work (which freaked my mom out because "WHY DO I HAVE TO GO DO THIS!?") and on top of that her Doctor called my Dad and spoke with him which again pissed her off…. It's something that needs to be worked on - how they deal with talking to the doctor, the doctor contacting my dad etc. The portal idea makes sense if no one calls my mom or my mom doesn't see any of it ever but that's not what keeps happening at the moment.
I said above my Dad did himself no favors by telling my mom EVERYTHING about what he had been doing. If he'd kept more of it to himself it might not have gotten as bad as it is (or maybe it still would have).
I'll have to figure out how to help my Dad with the calendar - I think right now he's a little stuck on providing her with what she asks for to avoid an argument and can't really deflect easily with - "I'll print it tomorrow" as a distraction.
I'm not writing everything that has happened this week down but I am going to call the hotline listed on the site when I'm back home tomorrow afternoon and talk things out more maybe work through everything that has happened and see if I can create some ideas.
(As a reminder from other posts - I live in another state about an hour away, my parents live together in an apartment they really should have moved out of a couple years ago (he knows that, she's apposed for a number of reasons that existed before the Alzheimer's) … but that's another argument waiting to happen.)
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"IMO, any physician who doesn't make it possible to report symptoms discretely obviously has no idea of the realities of living with dementia."
I'm not sure if it's this or my Dad not being able to work out a system without feeling like he has to tell my mom - I'm going to talk with him about. Once I get home I'm going to write up an email and send it to him with everything. There's a lot of things he needs to work on. The good news is that there is a social worker who works at the doctor's office who has already been in contact with him and he has spoken with her a couple times. I'm going to keep encouraging that
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Okay Dad and I were able to have a discussion away from mom. I have some answers to questions he has some answers and ideas. We're figuring things out. He knows what he has to do - I have more information about her medication as well.
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I’m glad! It is a process and there is so overwhelming in the beginning. I hope things start going a bit more smoothly.
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Commonly Used Abbreviations
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POA = Power of Attorney
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