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Throwing things to get her way
ran2much
Posted: Monday, August 26, 2019 9:14 PM
Joined: 3/9/2018
Posts: 48


My mother, whom I love with all my heart, resides in assisted living where about 45% of the other residents also have dementia.  She has gone from cussing out staff who dont give her what she wants or help her quickly enough to throwing things when she is frustrated.  Lately, she is fixated on her ishium bone on the right side (the bone you sit on). There is no sore.  There is no bruise.  She says tylenol and ibuprofen do nothing.  She walks fine, sits fine.  If I come pick her up, it all "goes away".  I am beginning to think shes not really in pain, but more anxious as she loses ground cognitively. I will get an order for an xray tomorrow to do my due diligence, but as her daughter, and as a PA, I really dont think she is injured. I'd like to break that habit as I am currently having to pick her up every day that she throws something 5 of the last 7.  Her dementia has seemed to worsen over the past couple months.  My guess is she wants to be in our house again (no, two small fires with her, we work full-time, im also in school FT, and we have a 5 yr old),  Facility says, gently, you need to get something to calm her, low dose, on a daily basis.  We cant work with her or help her if she is yelling, cussing, making a scene and ending it by throwing something... it happens once or twice a day and then it ends... But, if I dont come get her, she may not leave her room and will still throw something.  She takes aricept, but couldnt handle namenda (she has alot of diarrhea at baseline and that made it much worse resulting in monthly ER visits).  She takes sertaline for her previous irritability which helped for awhile, but in the last 6 months, the cussing at staff became the norm and now the throwing things.  The facility wont keep her like this.  Does anyone have any experience with this? Has anyone had to try a "whiff" of seroquel or haldol or anything else?  I am sorry in advance for anyone who is triggered by the idea of medicating her, but its become her way or "duck and cover".  I really dont need judgment.  We need ideas and experience.  

Thanks in advance.

Tracy


Golly
Posted: Monday, August 26, 2019 9:40 PM
Joined: 8/25/2019
Posts: 8


No judgment here. I've heard it all! It is clear that your LO needs the care provided where she is. So the priority must become to find a medicine that decreases the behaviors they cannot manage. And they aren't exaggerating, because you see it too.

My DF was sent away from 2 care homes because the behavior eventually over-rode every medicine they knew of. But his was an extreme case - very rare. It put a hard burden on my DM to find other residential facilities, since many don't handle memory care.

So, with what I've seen, I would not shy away from the possibility that there may be a medicine solution that works. There is no shame in easing suffering. And the behavior may not look like suffering (more like lashing out) but what lies behind the action is discomfort of some kind.

Haldol is strong, but there are different doses possible - it's the effect that matters. There are many different meds that can slow down responses so a more relaxing life becomes obtainable. 

Best wishes to your and yours!


Tess228
Posted: Monday, August 26, 2019 10:18 PM
Joined: 9/9/2017
Posts: 14


I’m so sorry you are having to deal with these issues.  I don’t think anyone who has had to deal with these circumstances would judge another person for using medications to help calm a loved one.  My mother (lives with me) has displayed some of the same actions that you described.  We have tried a low dose of Seroquel and it seems to have helped to some extent.  We still have breakout episodes, but they are not as frequent.  In my case, it’s not a “habit” that I can break.  I’m almost certain it’s a manipulative, albeit unconscious, tactic on my mother’s part to gain attention.  Anytime my attention is not solely focused on her she will start yelling, cussing and throwing things at anyone who is nearby.  It is for the safety of all concerned that we started the different drugs (Seroquel, Aricept, Lexapro, Trazodone and etc).  Whatever helps you, the staff, and your mother live happier/calmer, then go for it.  No one wants to see our loved ones medicated so that they can’t function, but sometimes a little can make a big difference.  

Godspeed

   


harshedbuzz
Posted: Tuesday, August 27, 2019 2:43 AM
Joined: 3/6/2017
Posts: 1709


Tracy-

No judgment. But a couple of thoughts-

1. If your mom is to the point where she can not be safe alone in your home, than it's likely the AL cruise has sailed and she is already a candidate for a MCF. Many PWD struggle in AL because they are assumed to be self-motivated to engage, activities offered are beyond their cognitive abilities and the residents who do not have dementia tend to interact with others who are more like them. 

I would be looking at a different level of care that is dementia-informed and offers a better staff:resident ratio. It might make sense to scope out which hospital has the local geripsych unit in case that is needed- we have a couple here and some are more highly regarded than others.

2. Do follow up with the "pain". In the middle stages of dementia, dad complained on and off about "broken ribs" after a fall. It's weird that he could not recall what he had for lunch and believed it was 1972, but he could recall the fall and that my mom didn't help him by letting him land on her. He'd mentioned it to doctors who never found anything until I was looking at a CT scan report for his COPD and noticed a mention of some inflamed gall bladder tissue and stones. Dad's gall bladder came out in the early 80's, but they missed some and it was causing problems. He wasn't a candidate for surgery, so we had to rely on dietary changes which seemed to help. He was wrong about the source of pain, but he was in the general vicinity. That said, as he progressed into the later stages, he sometimes co-opted other people's ailments. He was convinced, for instance, that he had his knees replaced when that was actually my mom's issue.

3. Haldol is considered a drug of last resort. I would encourage you to consult with a geriatric psychiatrist about trialing something to help her with the emotions driving this behavior. Another advantage to many MCF- they often have a house geripsych who can come to her.  My dad, who had some underlying mental health issues, was just nasty and aggressive in the middle stages of the disease. Seroquel relieved his anxiety and the behaviors associated with it. He started on 25mg Seroquel at bedtime and eventually ended up with a second morning dose. This did not sedate him, it just took the edge off his anxiety and dialed back the aggression. Because dad was home with mom, we "de-weaponized" the house removing guns, knives, cast iron pans, golf clubs, and anything small enough to be thrown on the advice of the OT and PT who worked with him in rehab after a hospitalization. 

Good luck. 


zauberflote
Posted: Tuesday, August 27, 2019 10:02 AM
Joined: 10/24/2018
Posts: 408


Tracy, you've heard from a bunch of posters whose opinions I value greatly. Their experiences have given them wisdom 

No judgement here!

Mom, a 98 pound weakling, has thrown things but only a few times and only as an expression of totally helpless frustration. In the first week, she "threw a book at" a caregiver. Well, actually the caregiver was so up in Mom's face while nattering on and on that Mom threw the book she'd been happily reading. The carer was too close and took the hit. A few days later, Mom was weeping on my shoulder and threw her glasses in utterly helpless frustration. Since she can only throw frontwards, she missed me; she wasn't aiming at me anyway, just as she wasn't aiming at the carer. A couple of months ago, in her utterly helpless frustration at being constrained to stay in the hyper-stimulated common room, she "threw" her walker down ("down") the hallway. 

I so know how she feels. Over the decades I've kicked in a door and a wall (wooden clogs make that a terrific tension release!!! Lol), and bludgeoned any number of inanimate objects to a gory death. It only happens when I am so far beyond exhaustion plus frustration that my idiocy filter overrides all others. I see the same emotions in my mother. I don't believe she's "trying to get her own way" for the sheer pleasure of manipulating others. I believe she is wanting to have her own needs for peace, quiet, and the ability to process life at her own speed met, and when nobody understands her words and facial expressions, her body language finished the story. 

All that said, my mom is normally a sweet and gentle soul, and her MC staff is well able to take care of her occasional outbursts. I think you have something more intense going on. No advice for you, just, offering my experiences. 

Regarding your mom's sitz-bone, has she ever had sciatica? I have it. It hurts like a pack of mice gnawing. If a pleasant distraction comes along, my brain is VERY happy to be distracted from the pain. 


ran2much
Posted: Wednesday, August 28, 2019 1:25 AM
Joined: 3/9/2018
Posts: 48


Thx for listening and writing back. I found your info helpful and feel less on my own.
ran2much
Posted: Wednesday, August 28, 2019 1:30 AM
Joined: 3/9/2018
Posts: 48


Out of curiosity is the seroquel like 25 mg at night or twice a day or did you have to go higher? We just got a script for 25 at night and we’re told to follow up. Everyone is different, I know. I just like to hear others journeys.
Jo C.
Posted: Wednesday, August 28, 2019 8:45 AM
Joined: 12/9/2011
Posts: 10067


Have you had your mother checked for a "silent" UTI?  This is often a trigger for behavioral changes that persist until the UTI is treated.  It happens so often for so many of our LOs.

Also; I have had onset of severe coccyx pain that persisted; wonder if this is the issue rather than ischium . . . the pain for the coccyx was at intervals, BUT it was dreadful.  No skin breakdown, no bruising, no fracture, nothing, but there it was.  Many years ago, I had injured the tailbone on a ride at Disneyland and it took months to get over it.   Suddenly, many years later, there was the pain again with no injury, etc.  What helped was a steroid which extinguished it.  Not saying this is what happened, but from my own experience, big time pain and nothing diagnostically to "prove" it except the patient's input.

As for the Seroquel, sometimes the amount and the time given must be adjusted; it happened with my step-dad and it took a couple of adjustments to get it right for him. ONLY under the orders and supervision of the dementia specialist.  No matter our backgrounds, we need to have that level of expertise.

And of course; is an ALF the best setting for her . . . . and would it be helpful to have a hired companion come in several days a week in the afternoons to be her "friend?" This helped my mother consderably; of course NEVER said it was a hired person, just a friend. 

Sending best wishes; let us know how it goes, so hope it all turns out on the good side of the ledger soon.

J.


Birdog00
Posted: Wednesday, August 28, 2019 9:00 AM
Joined: 2/11/2019
Posts: 12


hi Ran 2 much !
sorry for your situation.  

my family went through similar trials with my mother, who is now 85, widowed and living in memory care.

Unfortunately her neurologist, who was part of a Memory disorders clinic was very reluctant to prescribe any benzodiazapines .  My mother who was living at home, and her behaviors were quite unmanageable was making my fathers life awful.

So,  the neuro started her on  Zoloft which he just kept increasing until it was up to 200 mg. 

I begged him for Ativan ...Xanax anything. What he said, was, " I dont like to give elders 

Benzos, ( Ok Ugh....well we're about to call 911 so ...)

All that Zoloft gave her diarrhea, prompted a GI work up much laundry, linen changes and carpet cleaning. 

Last Sept the Dr ordered Depakote, ( no improvement). My mother was wandering at night, crossing the street, accusing my father of cheating, lashing out at her aide, telling the neighbors "hes trying to kill me."

Then we finally got a low dose of Seroquel which did help temporarily , but then Dad passed away and Mom needed a live in 24 hour caregiver. She lashed out at her and wound up in Gero psych.  After 3 weeks back home and was so "snowed" she couldn't walk. 

She was on  Risperidone, Clonazepam, Depakote,Lexapro. 

In March  we moved her into a Memory care. She as overall been ok behavior wise. The staff there are wonderful in their approach . 

The Dr at her Memory care have agreed to slowly taper her psych meds and she is now off the Risperidone and just gets a tiny bit of Clonazepam at bedtime .025, Depakote and Lexapro. We are in a good place right now with her behaviors. ( she still doesnt like showers and sometimes yells).

I think it  was very hard to get the right balance for my Mom.   You need a physician who is willing to work with you.  Also a Memory care sometimes has there own staff Dr and staff psychiatrist. I wish that Geriatric psych was more accessible , and recommended by primary caregivers. 

good luck in your journey. 

 


Birdog00
Posted: Wednesday, August 28, 2019 9:06 AM
Joined: 2/11/2019
Posts: 12


Just an added thought ... when my Mom first went on the 25 mg of Seroquel we did see some improvement.( for about 6 wks) But then after my Dads death, and a new live in Caregiver that upset the apple cart it wasnt enough. Its  definitely a good starting point.  And, Depakote that didnt work last Fall is working splendidly now. Go figure.
harshedbuzz
Posted: Wednesday, August 28, 2019 9:19 AM
Joined: 3/6/2017
Posts: 1709


ran2much wrote:
Out of curiosity is the seroquel like 25 mg at night or twice a day or did you have to go higher? We just got a script for 25 at night and we’re told to follow up. Everyone is different, I know. I just like to hear others journeys.

We started dad on 25mgs of Seroquel in September of 2016. He was diagnosed after a psychotic episode related to alcohol abuse with mixed dementia (Wernicke-Korsakoff's and ES late onset Alzheimer's). People with the former commonly have "behavior issues" and that was the case with dad. We knew we needed to move my parents out of their homes in MD and FL to be nearer to me in suburban Philadelphia which would anger my dad who was already aggressive and threatening. upon discharge, I told the neurologist that we would not take him home without something to dial back his aggression- he gave us Seroquel and 7 weeks in rehab to help with the transition. He did particularly like being in rehab, but he did the PT and OT and was in a much improved mood by the time we moved them to their new apartment. Unfortunately, the gerontologist who transferred his prescriptions to the new pharmacy forgot the Seroquel and the pharmacy screwed up and filled prescriptions for another "John Harshedbuzz" with the same DOB from Sacramento. So no Seroquel, twice the Prozac, twice the meds for HBP including a diuretic and prescription strength NSAIDs that caused a subconjunctival hemorrhage. Dad was off the wall aggressive, but once we identified the issue, things calmed down pretty quickly and he settled in pretty well. We had a nice period in which he was able to go to dinner with family and friends and visit old haunts from the time when they had last lived in the area. 

The second morning dose of 25mg was added in May 2017 when he started to have hallucinations that were upsetting him and wasn't sleeping well. His mood settled but his sleep was still a challenge for my mother who was a medically complex 80 year old caregiver. We talked about an increase with his geripsych when he started up with the threatening talk again (like how my mother needed to die when he did because they did everything together) but we decided it was safer for both of them to place him in a MCF instead. He passed less than 3 months later from complications of aspiration pneumonia. FWIW, dad's geripsych believes dad likely had a mood disorder most of his life (probably one of the bipolars) so Seroquel would have been the appropriate med for that even without the hallucinations and anxiety driven aggression. 


ran2much
Posted: Thursday, August 29, 2019 1:19 AM
Joined: 3/9/2018
Posts: 48


Thank you very much for the detailed info. I’ve been caught in this situation if - if you don’t try something different, it’s not gonna change. I’m worried about side effects, but have to give it a chance. I’m searching for memory cares. Trying to these blow ups controlled. So she can have peace and anyone caring for her can too. All we need is to take her edge off. I have a Geri psych appt schedule for Sept 11.
ran2much
Posted: Thursday, August 29, 2019 1:22 AM
Joined: 3/9/2018
Posts: 48


Thank you. Hearing others experiences helps give me courage to try a calming med. trying to get her out on ALF and into memory care.
ran2much
Posted: Thursday, August 29, 2019 1:24 AM
Joined: 3/9/2018
Posts: 48


Yes, think her problem is psychological. She’s rather be with me than anywhere else and if she’s not outside the facility, she swears she’s in pain and then cusses and throws things. She’s convinced she needs a hip replacement. Doc gave Tylenol and Advil. At this point, I’ll ask for an X-ray to be sure