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?

You're visiting for you, not her.

Hopefully this is just a phase and she will 'outgrow' it.

Check with staff regularly and see how she is doing. If your presence makes her rage, then stay away. It will only agitate her and make you sad.

She is safe and cared for. Sometimes, that's the best we can hope for. I'd stay away for the time being. Let your memories be the good ones, not the ones that are being created by mom being belligerent.

It may not be a "phase." Sometimes the violent behavior lasts for a very long time, until the person finally moves into the end-stage of the disease where they are almost unresponsive.

I know this is not a popular view, but maybe it would be better if you don't visit her right now. Alternatively, the staff may need to put her on something like Ativan to calm the aggressive impulses. (That is what they needed to do with my late father.)

Wow, reading through these have helped me in my situation quite a bit. I'm waiting for a diagnosis for my mother, and to get her treated for whatever is going on.

My mother was moved to a higher level of care because she become a risk for wandering and forgetfulness.

I am the only family member that has helped her through this process and try to be as loving and caring as possible.

She has become very hostile towards me, won't talk to me when I visit, etc.
Over the weekend, she got upset with me on the phone and got really nasty with me. I asked if she could not be so nasty to me and she replied, "I can be as nasty to you as I want because you are to blame for all of this." And then to top it off, hung up on me and wouldn't take my calls. I was so upset but I've spent a lifetime of her manipulating me into getting what she wants with this behavior.
Dealing with her on this capacity, I had to start standing up for myself as I work through this and she doesn't like it. I've learned a lot about Borderline Personality Disorder and from all that I've read about it, it seems spot on for her.

She is in a safe place where the staff are very attentive to her and her needs. I've actually been told by them to basically step back and let them do their job (in a nice way).

After the last hang-up I was so furious and tired of her nasty calls and voicemails, I called my cell phone provider and asked that they disable my voicemail and have been avoiding her calls. I just can't take it, she's got me on the edge of a breakdown.

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.

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.

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.

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.

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.

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.

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.