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?

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.

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.

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.

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 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?

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.

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.

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...

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.

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.

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.

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.

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.

11 falls really and you haven’t decided to do something more proactive? That’s not love my friend. I’m sorry. And I do feel for you but you need to shake yourself and get a grip on the reality of your situation. Safety first, any affection second. And that includes safety for you as well. I know my clients neurologist wanted to try a new medication it was on trial a couple years ago for someone in your mothers situation. Keep hunting. But 11 falls - no. Like you said, she’s not there anymore. Grieve for losing her, and then treat her like someone who needs help that you don’t know. That’s the way it is. At least by the way you’re describing it. Truly, I feel for you. much love and hugs to you & your sister.

These posts could have been written by me.
Today my visit was heartbreaking. When I got there she was crying. My mom has become so nasty towards me, saying I hate her so much I locked her in that place. She's in a beautiful retirement home with staff that treat her so lovingly. The staff tell me she participates in all the activities and is happy most of the time.
From reading these posts I don't know why but it seems to be me that triggers her to be so upset. I am the primary caregiver and used to visit 3-4 times a week. I've been having seizures so only go once a week when I can get a drive to see her. I don't know if me not being able to visit as often has upset her routine or if she thinks I've abandoned her.

It is my wife, my buddy of 57 years.
I grieved for my mother in her years of infirmity.
This is many times that grief.
I relate to the movie '50 First Dates' only I get to court her 50 times a day.


She has bvFTD, not the same as FTD, not Alzheimers.
bvFTD is Behaviour Variant FrontoTemporal Dementia.

She became mean in 2006, at age 53. institutionalization was recommended.
I kept her home, kept her close.
In 2011, she became violent and forgot who I am, who she is.

Doctors administered Alzheimer's drugs which had adverse and permanent physical effect,

I am sitting here watching her. She has to be watched as she will suddenly get up and pace. She has no 'safety awareness and will bump into objects. I do not restrain, as she is enraged by restraint and the pacing prevents muscular atrophy and clotting

She used to attack if approached when there is any discomfort. constipation, headache, has to pee, or already did.


Life was hellish for several years.
Life has been good since we discovered cannabis in 2013, and I am so glad I kept her.


There is no recovery, no healing, no improvement possible with bvFTD,
Christy's doctor says that the Cannabis administered for her seizures probably calms the bvFTD chaos in her brain and allows her momentary connections with who she was.

The Christy I married is gone, but I love this person and enjoy my days with her.

My dear Chrissy56, your mother does not hate you and your sister, even though it may feel that way.

My mother, also, began exhibiting behavior like that toward me. I was her caregiver, and had to put her in AL, because I could not physically handle it. However, she treated the aides in her new home in the same manner.

One day, in anger, and desperation, while having a tantrum, my mother blurted out, "My back hurts!"

A couple months earlier, while my sitting on her bed, she had slipped off onto the floor, landing on her bottom. Since my dad couldn't get her up, paramedics were called. They brushed her off and said she was fine. In actuality, she had two compressed fractures in her lower lumbar. Of course, no one knew that, and continued with her in her usual routine, which was badly hurting her. She didn't have the verbal abilities to let us know the pain we were causing her! Perhaps your mother is in pain?

Whatever the reason, it could be that she is trying to express some discomfort, and is angry you aren't get it. I'll pray that you find her need.

The last two answers were amazing in their depth of both understanding and suggestions. You and your sister are no less good than you ever were, and the person that you are loving has no more ability to love back. Your peace of mind has to come from knowing that she is being taken care of by the staff wherever she is now.
I am (80), and have two longtime friends and one family member by marriage suffer from LB dementia. It is a particularly devastating disease because, at least in my (3) encounters with it, the extreme combativeness and downright meanness seems to be where that type of dementia ends up.
My wife has had Alzheimer’s for (9) years and while it is difficult, I have not had to deal with that extreme personality turn. We are blessed, but you must consider yourself blessed that you had your “real” mother for as long as you did. Miss and grieve her now because that is only human. But carry no grief or burdens forward. You both have been good and loving daughters. God bless! And, HE does!!

I'm so sorry that you're going thru this. What I'm hearing though, is that your very intent on providing love, care, and affection to her. It seems though, that truly you are the one needing to give it because it's your need...to receive it. If she is in a safe place, then you must seek to have your emotional needs met elsewhere. She can not give you what you need, whether it's the opportunity to give or receive. That disease in particular is a monster and may or may not continue to change moving forward.

I would encourage you to seek out a compassionate Hospice organization, interview them, and start immediately talking with the social worker and/or grief counselor/bereavement specialist. While, clinically, she may or may not be eligible for the service at this time, 99% of hospices will welcome you with open arms. Support groups often have other people who, too, are no longer capable of giving or receiving physical affection from a beloved parent... you may have multiple ways to give the care that is your intrinsic need.

Use a journal to write down all of the kind, loving moments and words from your Mother that you recall... from your entire life. Make that your time together. Tell her in your journal what you would do to ease her suffering and yours, because in the flesh you cannot. Tell her why you feel guilty... and then forgive yourself- if she knew and had the physical capability of processing that information, she would forgive you, too. You're not a bad person for taking care of so many others and now not being to care for her in the way that you want to. This is not your fault... and not hers either.

There's nothing you can do or could have done to stop the amyloid plaques in her brain from clustering. There's nothing you can do stop this horrible digression in its tracks. You can though, allow her to get thru her day without an episode like the one you described... that too, is caring. Merciful caring for both of you.

My dad had LBD and suffered from changes in personality and behavior in the last two years of his life. It got so bad the Hospice staff held a conference with me to discuss the problem and were all considering requesting replacements for themselves! Care staff quit because of his behavior and the owner of the facility indicated that he would have to ask him to leave if the doctors couldn't find something to control his outbursts. We found that Lamotrigine (Lamictal) had sufficient mood stabilizing effect to make his behavior tolerable.

My dad was also a fall risk but the neurologist explained that unmanaged behavior posed an even higher risk to his ability to be housed and cared for. LBD patients can be problematic and many facilities won't take them if they have a reputation for difficult, and particularly combative behavior.

You may need to rethink your position on her medications and treat these interactions with her as a symptom that you need to get addressed on her behalf. Perhaps your own visits will improve as a result. Mine did, although irritability was always present.

One thing you can't successfully do is explain missing brain matter back into existence in your interactions with her. Others are correct that there is a level of acceptance incumbent on you because things will never be like they once were.

After my dad died, I spent 6 weeks dealing with infections because I was so run down from my severe stress. Others are also correct that to protect your own well-being you may have to take a break and manage her care from a distance.

Being a care manager for someone with dementia is as much an exercise in courage as it is in compassion. Sometimes you just have choose the best option from among unhappy choices because the good choices are no longer in play. It takes real personal fortitude to set your own desires aside and realize that your decisions for your mom's highest good sometimes will leave your own wishes unmet.

Wishing you strength and health through this tough journey.

Just wondering here.....
Do you and your sister go together?
Is the reaction the same if you go one at a time?
It is possible that she may feel "ganged up on" if there are 2 of you at the same time.
And depending on her Dementia she may be getting the 2 of you confused and this would be frustrating for her if that is the case.
If you try going on different days and the reaction is the same then it is the disease not your Mom that is reacting. If that is the case would it be possible even with her being a fall risk that you choose a time when she is in bed and the staff can medicate her prior to your visit so you can see her for a while then let her have a nap or if it is evening just let her sleep. I understand if this is a risk that you and the staff do not want to take but I have to imagine that she is probably like this with staff as well and I would think they have to do something before showers or a bath it would be to dangerous to take a fighting person into the shower area.
(Just another thought if she is not combative with staff next time you visit wear scrubs so you look like staff and see if you get a different reaction)

You are very lucky she’s in a facility & not home & have to be her primary caregiver like me. I discharged her from SNF 2 years ago & they warned me it gets much worse . I didn’t listen. Her Neurologist just says keep increasing Seroquel. She still gets agitated, hits, curses, pulls hair etc. Your so lucky you can just visit & leave when you want. Hugs 🤗

Your mom has dementia. I repeat, YOUR MOM HAS DEMENTIA. Think about that for a minute. This disease knows no bounds. It destroys the patient's brain. It leaves them with no trace of who they are or were as you are now learning. I would say, for now, stop visiting your mother. Her physical abuse of you is not wanted, nor needed. Go back and see her in about six months to gauge where her disease is at this late stage of the game. If she's still getting physical, then leave. And repeat the process all over again. Wait another six months and visit. She'll change again over time.

Bless your heart...I can' t imagine how broken-hearted you and your sister are enduring this. I know the fact that it is the LBD that's causing this behavior is of little consolation, when all you want to do is comfort her. I agree with some of the others who have responded, that perhaps you and your sister should take a break and just call to check on her for now, and to see if anything can be done medication wise to assist with this. You and your sister are in my prayers...

Bless your heart...I can' t imagine how broken-hearted you and your sister are enduring this. I know the fact that it is the LBD that's causing this behavior is of little consolation, when all you want to do is comfort her. I agree with some of the others who have responded, that perhaps you and your sister should take a break and just call to check on her for now, and to see if anything can be done medication wise to assist with this. You and your sister are in my prayers...

Why don’t you and your sister treat yourselves to some time off?

Everyone is correct who said to call to check on her. I don’t think I could bring myself to upset her or myself anymore unless things improve. Again, I am so sorry.

No experience but your story breaks my heart. This is heartbreaking. I’m so sorry. All I can offer is prayers. I hope you will find a solution soon for your family. Hugs!!!

The only advice I have for you is to accept that this is going to be a difficult time for you. My mom was also in nursing home care. On some days she was happy to see me and on others she tried to hit or pinch me or would even scream at me as though I caused her illness. It was extremely painful for me because I was the only one in the family who looked after her. My mom passed two years ago and I’m not really over it yet. Somehow, I just kept reminding myself that I was doing the right things for her. I also accepted that she was really not in control of herself and did not really intend to hurt me. I spent most of my life trying to please my mother but also felt like I never really succeeded in that. Nevertheless, I know that I watched over her carefully when she became elderly and provided absolutely everything that she needed while she was at home, at the nursing home, or in the hospital. So, although I miss her, I don’t have any regrets about how I cared for her. I know there were times when I made her happy and I know that there were times when she was incapable of expressing any appreciation. I prayed to the Lord for the strength to continue looking after her in every possible way and for the wisdom to know what to do on a daily basis. She is in the Lord’s Care now and I am learning to be peaceful because I did all that I knew how to do at that time. I’m sorry that you are going through this. I know how sad and painful it can be. Every day is a new day. When you look back at this time of your life, I hope that you will find peace and relief.

Visit her because you know it is the right thing to do. Forgive her because you know she can’t control her actions. When she won’t hug you, make sure you hug someone later.

I have been there.

Some days will be good, others hard. Make sure to do nice little things along the way for yourself. Do nice things for your sister, and others in your Mom’s circle. They are suffering too. These hard times can make you closer. Doing nice little things for others (when you can’t for your mom) will bring you relief.