Visiting my mom with probable Lewy body dementia causes her to become agitated and hit, kick and even bite. Does anyone have any experiences like this?

Eleven falls in one month is really off the charts! Why haven't you taken action sooner? You must try a different approach because doing the same thing and expecting a different result is not going to work. You can't take this kind of abuse and you shouldn't. Consult her physician for a medication check. THIS DYNAMIC MUST CHANGE.

It is great you want to love and comfort your mother but I ask - how can you if she is as you describe her? You love her for what she may have been before but that is NOT who she is today and nothing you do can change that. The minute she became abusive and started with the horrible behavior, that is when she should have been moved into a medical facility. Then go and visit her and if she starts abusing you there, just get up and leave immediately. Don't let her do to you what she is doing - it is sickening.

It seems that you and your sister are trying to process through the change in your mother versus what was the warm relationship you had. It is the process of grieving what has been lost between you and what it is like now. Her physical being is still here but her mind is gone and things will never be the same. It is so so sad I know. Cry and grieve as you need to do and eventually you will find peace with how things have gone for your mom. You can still love the memory of what was. Yet also try to think and feel "practical" about what is now. There is really no other way to go about it in these situations. You and your sister love your mother and will do your best to find a new relationship with her that is best for her and you both.

As a nurse, you must know this behavior is her disease, not your mother! Perhaps visits help some people with dementia, but often causes distress for both relatives and the patient. Who can say what her mixed up mind perceives? This disease has stolen the mother you knew. Kindness is all we can give to the victims. Sometimes that means keeping your distance, if your presence upsets them.

I agree with what others have said. You are grieving for the mom that was but is no more. Each time you visit, you hold out hope that this time will be different and it’s not. We can post that you need to accept it, but that’s much easier said than done. My mother was a Class A prude all her life. I had to learn about sex from books and friends. She could be cold and distant. But when she suffered with dementia, each time I visited, for the entire time I visited, she talked about nothing but sex. By the time I left, I was sick to my stomach. When I got home, I felt like showering. It was hard for me to accept that this was the new reality.

Can you ask at the facility if they might have or know of a support group? They do help.

My GM suffered many strokes. I wasn't there, but my aunt started reading the bible to her. The voice that came out of GM was strange. Something else. It was not nice. She did not like the bible being read. As soon as she stopped reading, that soul stopped screaming. They say it was not GM...

Get her a medical bed with rails. Set the medical bed in a position she can't maneuver out of, that may help.

If she wants to be more active, get a kids ball for a $1.00 and toss it to her or hand it to her. I did that with mom. She had ALZ. One day I did it a bit too much, and she threw it at me with anger and frustration in her eyes. I guess she didn't want to play any more. I got a ball that was bright with the disney princesses on it.

If other people were in the room, I would play toss with anyone who wanted to. It was fun. Even the people who couldn't catch the ball, I would walk it over to them, and hand them the ball so they could touch it, and act like they were catching and throwing. They all wanted attention.

I was under the impression that restraints can be applied if the family agrees. Is that incorrect?

Have you tried the weighted calming blankets? Might it calm your mother and provide the extra weight that keeps her from bolting?

I'm trying to understand your perspective, which I've heard from many others on this site, that her altered state involving agitation, hitting, kicking and biting is preferable to zombie.

I'm trying to figure out the pros and cons of visiting someone whose agitated, hitting, kicking and biting plus going home afterward devastated and sad versus administering sedation that may prevent the agitation, hitting, kicking and biting. Although sedation makes older people groggy, dosage is started low and at bedtime, and if the visit is less awful, I know I would want that. Otherwise and as someone wrote above, I'd seek to have my emotional needs met elsewhere or I'd trying visiting just observing rather than interacting.

You're certainly in a difficult spot. There are no good answers. It's just picking the least bad one. You have my sympathy.

She doesn’t hate you. You had a good relationship with her. Her brain is sick now. Does she even know who you are , ie that she actually means what she says , or could she be frustrated and taking it out on you? I was recently talking to my mother’s dr. about this. My mother is sweet as pie to most but horrendous to me and now my sister. At first it hurt that she said the things she did( she has always verbally abused me so definitely a throw back to childhood bad memories) but then I also know 1) I don’t deserve that 2) she’s crazy. I think you just have to try and take the emotion out of it. As a nurse, can you just go into “ difficult patient mode” and think of her like any other patient? It isn’t really your mom doing that, it’s your mom’s illness. Maybe take a break and try to get some distance?

Chrissy,

How painful this conduct must be for you!

This is not your mom. Your mom loves you and wouldn't treat you like this. This is the disease.

(((Hugs))))

She tries to get up and away? She does not want you around her sad to say, trying to change how she feels makes her more aggresive

You have your answer. It may be best to wish her well, pray for her and either cut down visits or don't go anymore.

So, thank you all for taking the time to respond and share wisdom and experiences. I guess that is the beauty of a sight like this.
I took some “time off” this past week from visiting my mom and that was helpful. I’ve also grasped that we are actively grieving our loss while simultaneously seeing her suffer.
My mom still knows us, but she is not oriented to place or time so she is confused when we appear and so frightened. That is what underlies the anger and frustration, then aggression.
Yesterday I visited and tried to remain mostly quiet and decrease stimuli. It was a much better visit. She also responds well to my dog. He is a large golden doodle and he loves her. She pets him and let’s him kiss her and he has a calming effect most of the time.
My philosophy moving forward is to practice the golden rule and treat her as I would want to be treated. I would not like to be abandoned at the end of my life while suffering such a horrendous disease. I will take breaks when needed and continue to work with the staff and her drs to make her days and our visits the best they can be.
For the record, she hasn’t fallen in the past month, as we have been tweaking meds.

The Dementia That Is Often Misdiagnosed
Frontotemporal dementia, or FTD, can be particularly hard on loved ones

https://www.nextavenue.org/ftd-dementia-misdiagnosed/?fbclid=IwAR3YExb9XHquG1jvcwFV-O2bn1G3b1ShN9AwQi0367_nq2jtoTxR8CuEYnI

Christy was tagged with the Alzheimer's label since 2006 and I see that is a common error. FTD was identified in 2014. 8 years after onset
Only by a chance phone call with a social workers was FTD identified.
The worker's husband had died from FTD and she recognized Christy's whimpering and growling in the background.
I have cared for Christy at home since 2006. She was banned from PACE day care in 2014 for attacking the staff. She drew blood on the director and they had to place her in a room with 4 staff guarding,
Christy was denied university geri/psyche ward because they would have had to both physically and chemically restrain her.
She startles at people noises and attacks the source. She went after staff who were laughing in the break room and then went ballistic when the drawer of the crash cart closed. They could not even get vitals.

Christy is only aggressive when there is discomfort, and violent when there is pain.
It is ironic that my nephew who was born with CDL is the same.
They can't express need or even comprehend their need.

Christy is agitated by some needs, hungry, thirsty, have to pee, already peed, have to poop, polyester and don't touch me.
FTD can cause veracious appetite. Christy does not know how to grasp objects so I hand feed her chopped food continuously all day.
She doesn't know how to drink from a cup or sip from a straw, so I have to hydrate her continuously with a turkey baster.
I toilet her every 2 hours. That involves supporting her from behind and apllying forward pressure to force her walk to the toilet. It is dangerous to approach Christy from the front.

Christy's enemies that cause violence are sudden noise, constipation, burning diarrhea, candida, seizures and restraint.
She is scary when constipated, The family backs off and lets me handle her those days.
Fortunately we have finally learned, signs of the severity and how to quickly remedy
The main cause is hydration. Although we hydrate her continuously and add a lot of water to food, she can be stubborn to drink.

There is no medication for FTD and Alzheimer's meds cause adverse effects.
Christy is permanently doubled over for no physical reason due to Alzheimer meds.

We give Christy cannabis edibles during the day but oral medication does not work when constipated.
I had to have my pain meds all delivered by IV when I was in the hospital.
Tylenol suppositories worked, also

There is no Rx for FTD seizures except cannabis, which stops the seizure within a minute. Edible canabis can take a couple hours to act and the seizures need to be stopped immediately so we deliver cannbis by smoke, which is instant.
The cannabis also calms her for several hours.

Burning diarrhea. I have had that a couple times in my life and it is excruciating.
When she is acting out, violent, we often note that there is an acidic odor and a yellowish smear when we dry wipe her,
That is remedied with a cool water enema.
The water flushes the inflammation casing debris from the anal and rectal folds.
It is Immediate relief and cure.
If the inflammation is severe we keep suppositories in the freezer.
The cold is instant and long lasting relief.
A washcloth and bowl of ice water works also.

Candida. Christy never had yeast infections, but since this disease, she get candida under her breast. She becomes violent and we can smell the candida. It smells like mouse urine. I had it under an armpit once and it is painful and itchy.
I thought it was Christy but she looked clear. Then I discovered it was me.
I researched in the internet and see that many women suffer with candida under their breast for days and weeks,
Desenex foot powder cures Christy instantly as it did my armpit.

Polyester clothing is an irritant.