Can't give up

FloydSnax

She's my mom. And its getting worse. And its all in her head. No matter how many thousands of times during the day, I tell her what's really happening... absolutely nothing. And to please relax. She has this drama in her head, first its "Where are the children?" I ask for names and she can't give them to me. "They're coming for me" or "Can you take me to that person" or "They're coming to pick me up and take me home tonight" when she's lived in the same apartment for 20 years. 

I keep trying to find answers, logic or a trigger that makes her change. Because the morning hours are usually ok, but today I hear this soft sighing, almost crying sound and see she's onto a new dilemma which isn't real. The crying is like that of a child that just makes the crying sound for lengths and forgot why they were crying in the first place. No tears, just moaning. For the rest of the day and into the night. I try to soothe her but it does little. All this suffering for nothing. I know its real to her.  

If anybody has dealt with such delusion or paranoia, how do you deal with it? I use the honest approach and after the hundredth time, I start becoming the enemy where she doesn't believe me and starts being mean. Which makes me want to leave and give up. They say there are good days and bad days but I'm seeing fewer and fewer of the good ones. Is there a secret word or song or something...to mellow this behavior? 

​fesk

FloydSnax, I am sorry you and your mom are going through this.

Unfortunately, you will not be able to reason with her. She is most likely no longer capable of understanding/reasoning. You can try to soothe, distract, and see if there is anything that works to calm her her - music, lavender essential oil, etc.

It does seem to me though, that she is in need of being evaluated by a physician to rule out any medical cause for the distress. If the behavior is new or worsening, sometimes urinary tract infections are present and can be treated. I recommend consulting a geriatric psychiatrist to see what medication can be prescribed to ease her hallucinations/delusions.

toolbeltexpert

Floyd sorry your having to go thru this. First being honest isn't  gonna work and it may just make things worse. I had a hard time with that. When she asks for the children, fibs work best. Like they are coming tomorrow, or they have covid something to try to ease her anxiety.  Try some of her favorite story to move her into another reality that she would enjoy. I would also recommend watching some of teepa snow videos they have be a big help. I am sure others will chime in will good advise. Welcome to the forum and keep posting.

harshedbuzz

FloydSnax wrote:

She's my mom. And its getting worse.

Hi and welcome. I am sorry for your reason to be here, but glad you found us.

And its all in her head.

True. Her brain is diseased and doesn't work as it once did. Since she cannot process information in the same way as before, it's best to meet her where she is which means changing your approach. 

No matter how many thousands of times during the day, I tell her what's really happening... absolutely nothing. And to please relax. She has this drama in her head, first its "Where are the children?" I ask for names and she can't give them to me. "They're coming for me" or "Can you take me to that person" or "They're coming to pick me up and take me home tonight" when she's lived in the same apartment for 20 years. 

This is classic dementia behavior. Many PWD worry about the welfare of children (never sure whether they mean younger sibs, you as a child, grandchildren). Speaking of "home" is more about a desire for safety and being cared for than it is an actual location. This sounds anxiety-driven and may respond to strategies to address that. 

I keep trying to find answers, logic or a trigger that makes her change.

What's that old definition of insanity? Something about doing the same thing, over and over, and expecting a different result I believe.

Rule One in Dementia Fight Club is that one does not attempt to reason with a person who has a broken reasoner. Your mom is beyond being able to follow a logical and well reasoned explanation. If she could, given the short term memory deficits associated with dementia by this stage, she wouldn't recall it long enough to be calmed by it. 

Because the morning hours are usually ok, but today I hear this soft sighing, almost crying sound and see she's onto a new dilemma which isn't real. The crying is like that of a child that just makes the crying sound for lengths and forgot why they were crying in the first place. No tears, just moaning. For the rest of the day and into the night. I try to soothe her but it does little. All this suffering for nothing. I know its real to her.  

This is "sundowning" and very common in mid and late stage dementia.

If anybody has dealt with such delusion or paranoia, how do you deal with it?

We pretty much all have. It goes with the territory. If there are caregivers who've dodged this bullet, they aren't hanging out here.

Most of us rely on validation techniques and redirection to another more pleasant topic. Validation is a strategy of recognizing the emotion in the moment- it might mean telling her a therapeutic lie about the "kids being OK" or that you'll "take her home in the morning when it gets light, so let's stay her tonight". Then pivot to another topic "why don't we have one of those cookies I bought today". Sometimes you can soothe agitation by engaging them talking about something related to that upon which they are stuck. If she asks about the children, maybe you could introduce a fond or funny story about your childhood and her as a mom. 

If she's resistant, or really agitated to the point of aggression or beyond being engaged in redirection, medication from a geriatric psychiatrist could be trialed. He upset and unhappiness are very real to her and sometimes meds are needed to make a person emotionally available to validation and redirection. 

I use the honest approach and after the hundredth time, I start becoming the enemy where she doesn't believe me and starts being mean. Which makes me want to leave and give up.

Honesty is over-rated. The correct answer is always the one that brings the most comfort. Always.

They say there are good days and bad days but I'm seeing fewer and fewer of the good ones. Is there a secret word or song or something...to mellow this behavior? 

A different approach should yield better results unless she's particularly "stuck" in which case medication management should be sought. 

HB

NuttyProfessor

Amen to redirection and distraction - IF your mother is amenable to that.

The big problem with my mother is that once she's on a delusion/anxiety/paranoia jag, she's absolutely impossible to redirect.  She needs medications to make it possible to redirect her....but ONLY if you catch it early, when she's just starting to get edgy.  Once she's gotten into a full blown panic, there's nothing I can do except disengage and leave the house for a while to let her calm down.  The key is to recognize that "getting edgy" phase and acting before it progresses.

It helps to identify things that your mom really likes.  I've found that offering my mom and glass of wine or brandy is the best distraction.   The aides were a little shocked at that, but I told them...you have to pick your battles.   Also, when you're 86 and have Alzheimer's and want a little glass of something, my perspective is...you should be able to have it, you've earned the right! 

Similarly, there are things you might be saying that make her edgy, like telling her that her memory isn't what it used to be.  I've learned to be super careful about that.  For example, I bought my mom a new, simplified "flipper" TV remote.  I told her that everyone including myself has trouble with all the fiddly buttons on remotes.  This makes a huge difference in her reaction.  If I said I bought it because she's having trouble working the TV remote, she'd have blown up for sure.

mommyandme (m&m)

My constant self talk is “I have to adjust because she cannot”.  Telling  her the reasons for her situation is basically saying she must adjust to her new reality.  That, most likely, will never happen.  We may see glimpses of comprehension but it’ll be fleeting.  Some of my adjustment means I have to apologize and take responsibility for most everything that’s upsetting to her.  Doesn’t mean much to me yet she will feel some calm in the moment or maybe the day. It’s difficult for sure but I must adjust almost daily for my new mom and her reality. 

I’m sorry and I hate this for all of us.  Thank you for sharing,  please keep us posted.  

FloydSnax

Fesk

Thank you for your response. I do remember her latest Doctor telling me about this UTI connection to this. We have an appt early July and I'll definitely look into this. Tho she's turning 90 and she's been slipping for years now. Thanks again. I've learned a lot from every single response.

FloydSnax

ToolBelt

Thank you for your response. Its funny, I've lived my whole life telling the truth. To a fault. Now(and you're right)it seems lying is the best way to go about this. Especially lying to my mom! Kinda funny. You're right too. Its a fib not a lie. Thank you.

FloydSnax

Harshedbuzz

Thank you for your response. It has been very helpful. I've been a member for ONE day and I'm floored by how encouraging the responses have been. And how much I've learned. And you are very kind with your definition of insanity...We all know what word that definition is really for. In my defense, I've tried different things (over and over) every day in dealing with the same behavior...hahaha. Kind of different and kind of the same. I've been in this for a bit now and I don't know why I'm so surprised or almost caught off guard by its progression. Still trying to reason...but not anymore.

I've tried asking her doctor (gen phys) about better or different meds in dealing with this and I never get a true response. Definitely not an enthusiastic one. I sometimes think its because my mom is 90 that they don't react so enthusiastically. She even said she was going to make a new appt with that department and we never heard back from her. We have an appt early July so I can push again. I swear, the other night was so frustrating and chaotic that I wish I had some magic syringe (like in the movies) to just put her to sleep or something. 

Thanks for the advice. Its been helpful. Yesterday when I typed my post, I was shaking and at wits end...  Tonight, I'm not. Thanks   

FloydSnax

NuttyPro

Thank you for your response. I wish I would've posted this a day earlier because I specifically remember when I heard her make this "switch" and I could have squashed it (or tried to) right then instead of battling the entire day. Which has left me drained today. 

I've only been a member for one day and the advice and comments have lifted my spirits like you wouldn't believe. I really did think I was alone, and this site proves otherwise. 

FloydSnax

M&M

Thank you for your response. Every response has been pretty helpful to me. And your phrase: I Have To Adjust Because She Cannot... is pure magic. My sister and nieces still don't get it. They will when I make them T-shirts with this phrase. And I'm going to try your apologizing and taking responsibility for whatever has her flipping out at the moment. I will gladly take the blame if it can soothe her even a little. Thank you and I'll send you a T-shirt!

Fairyland

FloydSnax,  I read this site almost every day, and I remember how the “scales fell from my eyes” about changing my approach, and instead not expecting the LO to return back to how they were in the past. They often can’t give up on the things that spoil their days, by themselves, but YOU (often) can! 

And don’t beat yourself up when you forget your new script and things go south.

 It’s a very very profound change to normality and takes time to learn. You have been an award-winning actor in a logical well-known Shakespeare play for your whole life that everyone is familiar with, and have memorised the script. Now, suddenly, you are in a very unappealing 24/7, avant garde, performance art production with no script, no rehearsal and no clue how you got there. And would never have agreed to!

ButterflyWings

Hi Floyd, 

Welcome to our helpful group though we so wish it was not needed by anyone. Glad you’ve found us. Your mom has anosognosia - not denial, she literally has no idea she is impaired. FYI, UTIs are urgent and can be very dangerous (sepsis). I wouldn’t wait for a July appointment to check that out. 

Good news, there IS a magic syringe to put her to sleep! It is called liquid melatonin and is gentle, plus otc (over the counter). They sell quick dissolve tabs too. My DH can be heck on wheels, and even with his prescribed meds, (Seroquel is magic for us), I sometimes still have to give him a bit of melatonin in a small glass of water or juice to quickly slow him down from exit seeking or agitation. 

Best of luck to you. Definitely learn workarounds from our forum mates here - lifesaving (and sanity-preserving) tips. Will make your life so much easier. 

*Added: sharing a few of my favorite links. Helped me SO much. 

This: https://www.vha.ca/2021/compassionate-care-strategies-using-the-7-as-of-dementia/

This: https://dailycaring.com/6-ways-to-help-someone-who-doesnt-know-theyre-ill-anosognosia-in-dementia/

And an excellent article most of us swear by. Great to share with family and friends:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

FloydSnax

Fairyland

Every word rings true. I need to completely change the way I keep trying to find hope (my mom's name) in this. There is no *$%& silver lining. I was so positive yesterday....No one can keep this sh-- up. I guess there are good days and bad days for caregivers too. Hope for tomorrow.

FloydSnax

Wings

Thank you. Very, very helpful. I will look into the Melatonin. I think at one point we tried that, and it failed. But it wasn't liquid. Looked more like a supplement? I'm using ZzzQuik at night and that with the Trazadone puts her out within a half hour at night but of course I can't use that during the day. Her doctors are split on the usage of Zquil but she used to not sleep and now she's getting 9 hours on average so Id rather have her as a rested manic than one with little to no sleep. Thank you for the links. I need to read everything. Just a couple weeks ago, it was only at night where these "events" would take place... Now they're becoming 24/7. Or maybe 20/7. But I can see the writing on the wall.  

harshedbuzz

FloydSnax wrote:

Harshedbuzz

I've tried asking her doctor (gen phys) about better or different meds in dealing with this and I never get a true response. Definitely not an enthusiastic one. I sometimes think its because my mom is 90 that they don't react so enthusiastically.

While I have personally run into agism in medical care for my own mom who doesn't have dementia-- I was reporting a complete change of stamina and energy level in my mom with COPD and her pulmo told me "this is what 80 looks like- you need to get used to it"-- I suspect this reluctance has more to do with the options for "treatment" of dementia.  The current meds only seem to be effective at improving function for a fairly small subset of those who take them and then only for a year or two. They have a relatively high number of reported side effects (mostly GI-related). And while they do seem to improve day-to-day for a time, they do nothing to slow the progression of the disease running in the background. 

She even said she was going to make a new appt with that department and we never heard back from her. We have an appt early July so I can push again. I swear, the other night was so frustrating and chaotic that I wish I had some magic syringe (like in the movies) to just put her to sleep or something. 

It is better to see a geriatric psychiatrist for psychoactive meds if possible. It's kind of a dark art to put together a cocktail of meds which can keep her calmer proactively rather than get into the wack-a-mole scenario of a bigger gun being needed to sedate her after emotions have gotten too big for a PWD to process. 

HB

rangerpax

mommyandme (m&m) wrote:

My constant self talk is “I have to adjust because she cannot”.  Telling  her the reasons for her situation is basically saying she must adjust to her new reality.  That, most likely, will never happen.  We may see glimpses of comprehension but it’ll be fleeting.  Some of my adjustment means I have to apologize and take responsibility for most everything that’s upsetting to her.  Doesn’t mean much to me yet she will feel some calm in the moment or maybe the day. It’s difficult for sure but I must adjust almost daily for my new mom and her reality. 

I’m sorry and I hate this for all of us.  Thank you for sharing,  please keep us posted.  

Thank you -- such a great idea on yet another bad night: "Why did you take me to the hospital?" (3-4x). Why are you so horrible to me?"

and

"I'm doing fine! I had a few falls. I don't need anyone coming in to my home to say how to make it safer. I just need to be more careful with my walker."

It's a great idea to just apologize, say I'll try to do better. I think she might have anosognosia. I've mentioned memory/forgetting stuff a few times, but there is no response. Maybe she suspects that something is going on ("when am I going to learn to write again!?), and is ashamed/confused.

 Sorry if this is formatted wrong. This is my first post.

Belabotum

You all are so nice here. I agree with fiblets. Another thing I try to do is listen to some classical music in my earbuds if she is on a tirade about her sweet aide who comes by three to five hours a day three days a week.  I’ve also taken to thanking mom a lot as she likes to thank me with an insult attached so I say, “thank you mom for thanking me!” I tell her mom I care and love you and won’t leave you ever no matter what. Or Mom it’s not proper or decent of me to do abc, whatever she says I’m going to do that’s negative. I think of Mr. Rogers a lot. How would he have spoke to me. Good night.

Belabotum

That’s profound!

Belabotum

I also want to give my sincere admiration for your courage and phenomenal strength. I’ve  had profound moments where in the heat of accidents a sense of warmth came over me when I tried to cry (while mopping up water from the biday she turned on or a number two party in the bathroom at 3am.) when I knew, it was mommy, she prepared me somehow, for this. And now good or bad it’s my turn. I don’t know if you had that feeling. Special if you have help or SO who shares or also had this situation before too. They are invaluable and a blessing. If not we’re all here. I’m new but I’ll do best I can. Gnight again lol

Daughter80

That’s incredibly hard. I wonder if you tried just pretending everything she said were real. Then seeing what you could do to pretend to help her. It seems that they live in their own reality and if we can just make believe our way into and through it we really may be able to comfort them. If she asks where the children are maybe you tell her that they went to the pool with their dad. Just make something up and as she asks more questions answer any way you think might bring her comfort. “Therapeutic fibbing” can work magic.