Almost a year ago, my husband with younger onset frontotemporal dementia, started pounding wildly on faces of family members/friends he saw in photos around our home. This violent behavior has progressed to beating on the faces of people on TV and other electronic devices, along with screaming obscenities at the faces, and last week, he actually broke our flat screen tv with his pounding-the whole screen is now black when we turn it on. About a month ago, this disturbing behavior began to include pounding on bathroom mirrors when he sees his own reflection in them. I’m terrified whenever he does this, that the mirrors are going to shatter, and even though I know I shouldn’t react with anger, as it just fuels the bad behavior, I instinctively yell at him to stop it. But he just laughs maniacally, and begins pounding again. He’s much bigger and stronger than I am, and so I try to calm down and explain that I’m afraid the mirror will break and he’ll get hurt, and then try to redirect him to some other room. But I’m on edge constantly, not knowing when he’ll be pounding on some framed photo, device screen, mirror, and even pics of people’s faces in magazines, and the pounding is always accompanied by screaming or screeching swear words at the faces.
My husband’s neurologist has had me start him on a small dose of seraquel to see if that may calm him down, but my question is, where might this hostile behavior stem from? It doesn’t appear that my husband is having any unseen triggers such as pain, hunger, too cold, too warm, boredom, etc. Seeing the faces themselves, seem to be the trigger. He even raps with his knuckles on the photo faces of close family members on the fridge. When I asked him what he’s feeling when he does that, he said “I just don’t like them” and these are photos of our daughter, daughter-in-laws and nieces:-( I have no idea what to do-I can’t take down every photo in our home, not let him look at any magazines or electronic devices where he will see faces, or cover up all the bathroom mirrors! I’m so at my wits end with this nerve wracking behavior, and I can only hope that the seraquel helps to at least diminish it, or cuts down on the number of violent outbursts.
In the meantime, I have set up in home care that will begin in early December, so I will have someone in the house to help manage him, and provide a bit of safety net for me.
Cherokeewaha-it sounds like you are also in a dangerous situation with your husband, and as he actually DID try to choke you, you’re VERY brave to still be with him! I hope you have people nearby to help you, and that you have a lock on your bedroom door in case you are in a deep sleep!
So many of you are in the same difficult situation as I am, and it’s horrible for all of us. I keep thinking I want to keep my husband at home as long as I can because I’m very concerned about the cost of putting him in a memory care facility-they are so expensive, and whichever place he goes, the costs will continue to go up each year, but not so my income:-( So what do you do when you need to keep yourself safe, but to do so, your fear of bodily harm will just be replaced by a fear of running out of money?!? I do have an elder care lawyer, and he has explained that in order to qualify for MediCal, you have to spend down all your money as you can’t have over a certain amount, and while we aren’t wealthy by any means, we still are above the amount needed to qualify, and so I will continue to keep my husband at home since paying out of pocket for a care home for possibly ten years, while still paying off our mortgage, will dwindle my money down to next to nothing. There are no easy solutions in dealing with ANY aspect of dementia-for either the sufferer or the caregiver!
"If you are MARRIED and are admitted to a long-term care and you are expected to remain for at least 30 consecutive days, and you have a spouse who is living in the community, then your community spouse may keep a certain amount of the combined community and separate property. This amount is called the Community Spouse Resource Allowance (CSRA) and is calculated based on the day you apply for Medi-Cal. Increases are effective on January 1 of each year. The CSRA for the year 2014 is $117,240. The institutionalized spouse (spouse in the long-term care facility) may keep up to an additional $2,000 of countable property."
Source: https://www.dhcs.ca.gov/formsandpubs/forms/Forms/MC%20Information%20Notices/MC007ENG(0414).pdf
(NOTE: the copied section says that the CSRA listed is for the year 2014. It is likely much higher now, as it notes "Increases are effective on January 1 of each year.".)
ALSO, they should NOT be touching YOUR income. If you have SS and/or a pension, those are YOURS. The whole point is to ensure the surviving spouse isn't impoverished.
The document goes on to say:
"The CSRA limit may be increased if:
• The community spouse obtains a court order for his/her support, or
• It is determined through a fair hearing that both of the following conditions exist: a. A greater amount of property is necessary to generate income sufficient to raise the community spouse’s income to the minimum monthly maintenance needs allowance (MMMNA). The MMMNA for the year 2014 is $2,931 per month. b. Additional income is necessary due to the exceptional circumstances resulting in financial duress."
Again, these values are for 2014, but it does say that MORE can be held back by you in order to ensure YOUR income to a minimum. That was $2,931/month in 2014, likely much higher today. There can be other issues that qualify for the financial duress.
I would have another chat with this atty. Your spouse's assets, when they community assets are split, would have to be spent down. There are legit ways to spend it, such as burial and funeral plans, paying for care either in the home or in a facility. The atty or MediCal can advise you on what's acceptable for spend down.
If this atty doesn't know about the community spouse assets, find another one who does!
We don't live in CA, so it's self pay or Medicaid, but the atty was able to ensure mom had funds in a trust for her, and she was able to keep her SS. Once dad passed, she got his pension (that has to be a special sign up at retirement, which reduces the initial pension some, but allows the widow(er) to have the income when the primary passes.) Medicaid required his SS and pension (I wasn't involved in the details back then, but assumption is they took all his income.)
I'd honestly consider getting some mace or similar... better safe than sorry.
i really wish I could get a video of my husband during one of his aggressive outbursts-I’ve tried, but usually by the time I grab my phone and turn it to video, the moment has passed. My son was able to witness his dad’s wild behavior yesterday, as he had to stop him from beating on the bathroom mirror when we were trying to get him into the shower. While my husband was finally showering, my son removed the mirror-so strange not to have it there now. When my husband got out of the shower, he asked several times “where’s the f-ing mirror”, but stopped after a few moments when my son wasn’t forthcoming with an answer.
And you’re so right, if my husband still had any awareness of self, he would be mortified at how he’s acting😳 I will do my best to stay safe, and thanks for the hugs 🤗
While waiting for assessment, as hard as it is, definitely remove or cover every picture and mirror. Even if the new med he is taking now starts to work, the effect could wear off and he could start again. Until it or something else works, not only could he create a mess, he could injure himself in the process. I should think taking the pictures down would be less work than cleaning up all the mess he could make, should he attack them. Bath and dresser mirrors would be hard to take down/remove, so use towels or sheets to cover them up. Hopefully you have shades or drapes that can be drawn over windows, as often one can see oneself in the reflections in the glass (usually at night.)
Start by contacting his doctor and tell them what he's doing and stress that he IS a danger to himself and that YOU don't feel safe! With the holidays coming up, you need to get this process started yesterday! PUSH hard when you talk to someone at the office.
Even if you wanted to place him in a facility, he would need the right medication(s) to keep him in control. Most places are not equipped to deal with someone who could be a danger to others.
You need to separate yourself immediately from him.
When people mention you taking photos on the walls down, you respond with it would be a big job. Get them down now. I bet you are thinking about packing them neatly and storing boxes. Grab some garbage bags, throw them in the bags and put them in the attic or somewhere out of sight. Those photos are not worth your life.
If he ever hits you you won't have time to call for help, from anyone. People who are mentally disturbed have super-strength. If you touch him he could in reflex hit you and knock you against a wall or make you helpless with one hit with his fist. At that moment in time, you are not his wife, you are the enemy.
If he is in a rage and you call the cops, he could be shot to death. The news is always full of a family member calling the cops because they can't handle a mentally disturbed person who gets shot because they won't/can't obey commands. If he won't listen to your commands, he isn't going to listen to a cop. No one with a right mind is going to let themselves be seriously hurt or killed by a mad man. My Granddaughter's boyfriend is Bi-Polar. He had an "episode" and the neighbors called the cops. He fought them, headbutting one and hurting him. Tasers didn't work, they only work about 60 % to 80% of the time. They told my granddaughter that next time they were going shoot him. The next time he had an "Episode" he reacted different, so he just went into a mental hospital.
I agree with the advice to video his rages. Please, get him to a place where he can get help and you will be safe.
We have a poster here named OldSailor who's wife Luz suffered from FTD dementia..........and he took extraordinary measures to accommodate her bizarre behaviors. I remember he'd put her to sleep naked because the Depends and other briefs bothered her. He'd then clean up after her in the morning; every day, for years. Here is his Page on Aging Care:
https://www.agingcare.com/members/oldsailor
You can look up the Answers he's given on his page, all 709 of them, and perhaps glean some tidbits of knowledge from him; he was an amazing caregiver to his wife. I hope that helps you in some small way.
That said, you are facing a difficult situation with your husband and his aggressive behavior. Have you discussed this with his doctor? You need to immediately if you haven't already. He can become aggressive towards YOU without intentionally wanting to, but having a brain disorder, it can happen. The doctor needs to be one who's FAMILIAR with FTD dementia because many are NOT, and they will not be helpful for you. Research neurologists who have experience with FTD dementia in your area. Go from there. This is, of course, assuming you need such guidance. There are medications than can be prescribed for behavioral issues; anti depressants and/or anti psychotics.
Here is a link to the Alzheimer's website for more info about FTD dementia:
https://www.alzheimers.net/signs-of-frontotemporal-dementia
And here is a link to a lot of different websites talking about it:
https://www.google.com/search?q=ftd+dementia&rlz=1C1CHBD_enUS896US896&oq=ftd+dementia&aqs=chrome..69i57j35i39j0l5j69i60.5536j0j4&sourceid=chrome&ie=UTF-8
As time goes on and your husband progresses with the dementia, you may want to consider placing him. Look into Memory Care Assisted Living residences and Skilled Nursing Facilities in your area as possible options for later on down the road, if things get unmanageable for you at home.
Last but not least, please do not hesitate to call 911 if you feel in danger at any time. DH can be taken to the ER by ambulance for a psych evaluation; there is nothing wrong with doing such a thing. Even though he is not 'intentionally' being aggressive, YOUR life is very important here too and so is your safety. Oftentimes, caregivers forget that............getting SO caught up in the care of their demented loved one that they believe he is the only important person. That's not true: you BOTH matter. Take care of YOU, too, ok?
Sending you a big hug and a bunch of prayers. I'm so sorry that you are going through this difficult situation.
Take the photos and put them where he doesn't see them. The TV may be overstimulating. Especially certain stations like CNN.
I’m worried about your safety. If you don’t feel safe, even for a moment, please reach out to someone who can help you.
Cetude wrote:
" Every single person who has suffered a stroke should be put on an antidepressant if they are able to take it."
Why in the world would you feel an antidepressant should be mandatory for anyone who can take it? That assumes that many aren't able to cope with a stroke and move on w/o an antidepressant. And it also encourages reliance on medicine as opposed to more healthy remedies. There's enough of a prescription medication reliance in the US already.
My father had a stroke at 80 years old. He didn't need an antidepressant and wouldn't even have considered it. He worked in his work shed (which he also partially built by himself), he interacted with neighbors, church friends; we went to free summer concerts; he drove across the state to visit relatives.
He never showed any signs of depression; in fact he's always been a determined person and that was his attitude, that it wasn't going to stop him from living his life to the fullest.
I never ever considered an antidepressant after I had a stroke. Why would I? I have my garden, my needlework projects, family and friends. Why would I need an antidepressant?
Cetude, I realize that you're trying to be helpful, but please think seriously about your recommendation. People are much better off if they can find coping methods that don't involve voluntarily taking medicine that may not be necessary. Why encourage someone to take meds if they're not needed?
All of your suggestions are very helpful. I’m thinking of having my son help me cover up the biggest mirrors with bubble wrap, and we actually do have a neighbor who’s a semi-retired police officer, living across the street, and he’s told me he’s there anytime I need him-and several times in the last month, I’ve almost run over to get him, but then was able to handle the situation myself.
Beeje, I have considered CBD and wondered if it might help. Would I need a prescription for it? Could he take it with the Seraquel? I always get concerned about interactions of being on meds with herbals and other alternative treatments. Personally, I hate drugs and would always prefer to go the more natural route, but in this case, it seemed the drug was necessary. As you said, Jennifer, FTD is NOT like Alzheimers-it starts right off the bat with personality changes and social inappropriateness, and the behaviors can be quite challenging. It’s terrible to witness the drastic, scary changes in your spouse whom you’ve known and loved for over forty years.
I’m now hiding the laptop and magazines and placing many photos in envelopes out of his sight, but we have so many framed photos on our walls, it will be a real chore to take them all down, and the saddest thing is, my husband took many of them, as he majored in photography in college, and was a very talented photographer, and even made it a part time business, in addition to his full time job with the office of education. Behavioral variant FTD has taken ALL of who he was, away😢
The point is - you need to get your husband a psychiatric evaluation ASAP. A doctor can help you understand what’s happening in your husband’s brain that causes these behaviors. My mother could become a whirling dervish lashing out - biting, kicking, punching, scratching, pinching, hair pulling. It was scary and dangerous.
There are also many things you’ll learn from professionals about creating a calm environment. Removing clutter is a start. Keeping things simple to avoid over stimulation is key. Rest and quiet during the day as well. I’d recommend starting to look for a memory care facility that has some knowledge or experience with FTD residents. Staff need special understanding of the triggers and how to respond. I was adjusting my mom’s care plan every couple of months to keep pace with the disease progression.
It is a challenging situation and I remember all too well the early days struggling to come to grips with it. But it can be better with the right help.
Stay on this forum. I learned a lot from others that was valuable for my own mental health. You will too.
I have definitely been thinking that my husband needs to see a psychiatrist, and I believe his primary care Dr had suggested that a while back ago, but I hadn’t felt the need at that time. Now, though, I feel it’s necessary to see one! I will have to contact his doctor for a referral.
Did your mom live with you, and if so how long were you able to care for her before needing to place her in a facility?
Thank you so much for all your helpful suggestions. I do notice that since my husband broke our tv, and we sit in silence while we eat, he is calmer at that time. I know it’s often advised to use music as an aide to help with mood and behavior, but it seems to agitate my husband instead of calm him, and he often will turn it off himself.
1 Take down all pictures and mirrors. Only listen to the news on the radio, Keep your magazines under lock and key for your personal use. Do this until you and his doctors work out the "unique cocktail" of medications he needs to calm his rage. Be aware that this could take a year or longer... and you may be at risk of him turning the violence on you.
2 Send him to an inpatient psychiatric unit for behavior modification. He will need to stay until his outbursts are either redirected through therapy or calmed down through medication (or both). It will be much shorter than trying to work on the solution at home... and you will be safe from him turning the violence on you.
At least while you see if the meds will work, he won't end up cutting himself with glass or mirror.
If he doesn’t respond to the meds, you are in an unsafe environment.
Do not hesitate to call 911 in an emergency.
Please remember if he turns on you, to get out of the house, away from him as quickly as possible. If you have neighbors that are close, I would let them know so they could be of help to you if needed. Prayers coming your way....Liz
And you might need to obscure your mirrors too, rub a bar of soap over them or cover with a cloth.
(I hope the seroquel works for you)
Annreid, you know, I don’t really think my husband’s neurologist understands just how wild my husband’s behavior actually is, and I’m partly to blame, as I guess I don’t explain that I truly feel frightened by his actions, and that I need urgent advise on what I should do, or who I should call, if my husband becomes violent towards me! I believe most people just don’t take me seriously when I tell them how insane my husband acts-many people actually laugh because they find it so strange. And yes, Cwillie, I AM terrified that he’s going to move on to real people, with mine being the first face he smashes! My daughter suggested having a cloth collage made of all our faces and attaching it to a punching bag, but I’m afraid that would only encourage the hostile behavior! Although, he does like to beat the faces of certain politicians. So I could use one of their faces. I actually have placed a toy drum near his chair by the tv, and told him if he feels the need to beat on something, he can use that. He will drum out a beat on it several times during the day, but unfortunately it doesn’t replace the pummeling of photo faces:-( I have actually removed a wonderful old framed photo of my grandfather, as that seemed to be a favored picture on which my husband would take out his aggression, even though he respected and admired the man, and spent lots of time enjoying his company many years ago. Thought I’d better take it down before he cracked the lovely frame right in half!
GardenArtist, I have wondered about a geriatric psyche ward for at least temporary placement, perhaps while we are waiting to see if the med will help. I don’t know what started him on the fixation of people, but one of the first distressing incidents occurred when we had come back from a Yosemite trip about a year and a half ago, and he was carrying my suitcase into the house, and suddenly he threw it down yelling “ I can’t stand looking at this picture, I just want to rip it up every time I see it! I hate her!” He’d been looking at my luggage tag, which was a silly photo of my niece and her husband that they gave out as wedding favors! I got so angry with him asking why he would hate our niece. He said because she was full of herself and was a sickening person. Yet my niece had never been anything but kind to us. I think his loss of love and good feelings towards people are just a part of this horrible dementia. He has nothing nice to say about any women now, and refers to most he sees on tv or in magazines as
f-ing bs. And yet all he can think about is having sex. I’m so disgusted by the man he’s become, even though I know it’s not through any fault of his own, and it’s so sad that this is how I’ll remember him once he’s gone, because the man I knew and loved fades more from existence with each passing week. And never would I have imagined there’d be a time when I became afraid for my safety around him, as he was always my rock and the man who kept me on firm footing. And now I need a panic button to keep myself safe. It’s very sad, but also a very good suggestion. Thanks again for all your supportive replies.