Aggressive behaviors

Lizzielou

My DH has FTD, approximately stage 5.  If I won’t go along with what he wants he becomes very intimidating, locking me out of the house, trying to disable my car and going to all the neighbors to tell them how awful and uncaring I am (he uses more colorful language).  It hasn’t escalated to physical violence but I am worried that it could.  I am looking at assisted living and memory care facilities but he is very resistant. I don’t know how to de-escalate these situations. He refuses to see a doctor so medications are not possible.

M1

Lizzie, please look at old threads about how to stay safe:  keeping your cell phone with you, identifying a room you can lock, having an escape bag packed and in your car.

I can't imagine any facility is going to accept him with this behavioral history unless you get him admitted to a psych ward and stabilized.  He probably needs it regardless.  You may need to call 911 and have him transported, with documentation that he's a danger to himself and you and that you can't care for him at home any more.  Hope you have your powers of attorney in place.

I'm so sorry, but it does sound like it's becoming unmanageable for you.

Jo C.

Hello Lizzielou, I am so very sorry for what is happening.  My LO had a behavioral variant of FTD and I can well understand your deep concern.  It can be a very difficult dementia; I have had it described to me as Alzheimer's on steroids.

It is of no use to discuss alternative living situations with him, he does not process with logic and reasoning and in FTD, it is all about  and him what he wants and believes in that absolute instant.  Delusions (rigid false beliefs) can certainly be part of FTD.  My LO became delusion driven. Irritability, agitation are hand in hand with many persons who have FTD and it is of no avail trying to speak logically and have that be processed and followed.  Most of your energy to make a difference and get help may have to be done without being in hearing distance of him and sometimes the use of fiblets are necessary to gain whatever cooperation is necessary.  I learned that the hard way and to my surprise using fibs did help.

A person in such a state can abruptly decide to act out in a seconds whim; it is their immediate feeling that can drive them and there is no filter or recognition of consequences.  I am not saying your husband will be a physical danger to you; however, you have expressed that concern which is why I am mentioning the following.

M1 is correct; you need to be able to keep yourself safe; that is a priority.  You will want to remove any guns from the house when your husband cannot see you doing so.  Also, any knives, scissors, tools such as hammers, wrenches, etc. that can easily be weaponized at the spur of the moment are also best removed out of line of sight and even locked in a cupboard or closet.

Best to keep a charged cell phone on you all the time and have access to a locked room if that should become necessary.  Sometimes, even putting together a "go bag" with items of clothing and important papers, some of your medications, credit card, a little cash and placing it in the trunk of one's car can be important if one wishes or needs to leave in a hurry.  Keep car keys in a easily retrievable place in the house or hidden outside so they can be quickly accessed.

That having been said, if your husband threatens you, even verbally, and especially if he lashes out, it would be best to call your local police department. In fact, many police departments will accept information regarding a person having dementia and their address and place it in their computer system so any call going out to that address will have  that information prior to their arrival on a call or if someone goes missing.

If he has threatened or made a motion to harm you such as striking you, etc., you can express to the arriving officers about what has happened and the lack of control he has with his type of dementia and request that your husband be transported to a local ER where you will want him to be assessed for admission to a Geriatric Psych Unit on an involuntary basis.  That is usually done by ambulance transport. Such an admission will give time to be assessed and monitored on a 24 hour continuum.  Medication can be initiated and assessed for effectiveness and side effects. At the end of the GeroPsych stay, rather than returning home, the person can be transferred to a care facility if that is what has been decided upon.

The Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, let the nice person answering the phone know that you have an urgent situation and need to speak to a Care Consultant quickly; asap as you do not want your husband who has FTD to hear the conversation due to his agitated behaviors.  Consultants are Social Workers who specialize in dementia.   If you call in the daytime, you can ask to speak to a very experienced Care Consultant as there will be a bit more leeway. Sometimes, it is just comforting to have someone to talk to and let one's feelings be heard.

If you are screening care facilities for knowledge, that is good; but do know that no facility will accept and keep him if he has severe problems with acting out; that will need to be addressed.  Also, do not forget you are important too. You are under severe stress and it may be a good idea for you to make an appointment to see your primary care MD to  have yourself checked out and also when and if you do, to let the physcian know how severe things are at home so that is documented.

This is a sad time and it can also be frightening; but do know it is only a matter of time and a bit of effort on your part to have this come to a safer and more manageable situation. Keep in touch and do let us know how you are, we will be thinking of you and we truly do care.

J.

Ernie123

Lizzie: I cannot add to the good advice the previous posters have offered. I second all the practical suggestions and I hope it helps you formulate a plan. 

On personal level I want to express my support for you. I know how confusing, stressful and terrifying it is to try and deal with these events. My DW, who now lives in MC, suffered from delusions and paranoia and would become extremely angry and sometimes violent with me. Not recognizing me, she saw me as an threatening intruder in her parents home of 60 years ago.

During those awful moments when I would have to restrain her, I somehow still managed to cope. Distract her, call a neighbour until the emotional storm past. Later I might be shaking and in tears. As you are learning, in the time of challenge we somehow muddle through the most difficult caregiver moments. 

But there are limits to what you can do. As stated above, you need to plan ahead, ask for and accept help. Especially since you are in physical danger you need to plan accordingly. I know how difficult this is for you. 

Please keep us updated. Even though we have never met, we don’t know each other, there are many of us on this forum who understand what you are facing. We offer our support and will try to help you in any way we can. God bless you.

Lizzielou

Thank you all for your kind words and excellent advice.  Jo C your description of FTD was especially helpful.  I understand a little better what is going on in his head, though it doesn’t make it easier.  He is so focused on the one thing he wants at that moment.  He can dwell on that for weeks until I am worn down. Right now it is about driving and getting a new car (I sold his car when he lost his license).

 M1 made me start thinking about whether a care facility would even take him.  I can’t see how I could get him there since  he doesn’t want me touching any of his possessions. 

Ernie123, I appreciate your support.  Good to know others have lived through this.

Jo C.

Lizzielou, you cannot interact with him regarding moving to a care facility using logic that a person without dementia would be able to process; he is far beyond that point; his brain is "broken."  Of course he will not accept or cooperate with such a placement. As it is, the idea of Assisted Living does not sound doable as a sustainable placement idea.   It sounds as though he may possibly have a behavioral variant of FTD.  The confounding part of that sort of FTD is that unlike Alzheimer's Disease, the person can retain some and even much memory until the latest stage of the disease which because of the FTD dynamics can lead to much negative mischief.  The constant hyper-irritability, agitation, demands, delusional beliefs are exhausting to deal with as they become more and more entrenched.  A person in this state also becomes more fixated on things, does not like change, and wants absolute control on whatever their mind settles on.   In this context, please take care of guarding your finances before they get plundered.

I had to take my LOs name off of all the accounts; also had to take the credit cards out of my LOs wallet and inserted an out of date card.   Also, mail regarding delicate matters and money matters were of a concern.  So; I got a mail box at the post office and had all mail transferred there. I actually did this mail change of address online.

Lizzielous; being that his acting out is pretty florid and dramatic, even if you found a way to get him into a care facility, which is highly unlikelyanyone would accept him in such a state, the facility would more than likely NOT keep him.  In order to have success in such a placement, you first would need to have him seen by a specialist and obtain medications for him to assist with what is so problematic. Of course he refuses to see the doctor - I will discuss my problems with that and how we got around the refusal.  Took big time fibs and some manipulation not letting on the truth of what I was trying to do.  No amount of arguing about seeing a doctor, or explaining, etc. will be helpful.  Your suggestions will be discounted.  This sharing my experience will be a little long:

My LO with FTD refused to see the doctor - ANY doctor.  I was getting desperate.  My LO had strong positive feeings about the BP meds for some reason and valued them.  I was really fortunate that the doctor's office helped me to use a giant fiblet to get my LO seen by the doctor.  I planned it out with the doctor's staff in advance:

The office manager called for my LO. She said, "Doctor was just reviewing all the patient records and it has been so long since he has seen you, he can no longer renew your blood pressure pills . . . . it is the law. In order for him to renew your prescription you will need to be seen; we happen to have a few open appointments, would you like to take one before they are gone?"   Well . ..yes, an appointment was grabbed.  But there was more work to do.

I had to inform the doctor in detail of what was happening.  So; I wrote a detailed memo outlining all of the change and problem issues and I got it to the doctor several days before our appointment.  You can even fax it and let staff know it is coming and is time sensitive to th appointment.  The doctor MUST read it prior to the exam, otherwise the exam is worthless.   I also carried a copy of the memo in my handbag to the appointment.  While we waited to get into an exam room, I excused myself from my LO to "use the bathroom."  What I really did was to get to the staff nurse and give her the memo. I asked her to please check with the doctor to see if he had read the memo I had sent earlier; if so, good. If not, I asked to please have the doctor read the memo prior to the exam as it was crucial to the patient's condition and he has FTD and the condition had changed.

The doctor was good.  He knew that my LO needed to see a dementia specialist, so he told my LO that there was back pain and changes in blood pressure and he wanted my LO to see a specialist; then he could renew the blood pressure meds. The specialist was actually a dementia specialist.  Doctor to doctor information happened, AND I also wrote that detailed memo and got it off to the specialist so he too would have full information

The specialist pretended to be about the back pain and blood pressure and heart, BUT did a Neuro exam sandwiched in.  He told my LO that he needed to have a Chest x-ray and wanted him to go to the ER at the local hospital as it would be better.  The specialist, after we left communicated with the ER doc to pretend there was an x-ray about to happen,  AND he also made arrangements for a GeroPsych Unit involuntary admission at the same time.  My LO got into the ER and was on a guerney.  Soon an RN came from GeroPsych to screen him; she looked like any RN in the ER, nothing said GeroPsych.  The ER doc said the exam showed my LO  needed to be admitted to the hospital for a short period to get exam done, and off my LO was wheeled down to GeroPsych which looked like any hospital unit. Success!  Whew! Complicated and time spent arranging?  Yes; but worth it.

Another time I got my LO to the doctor by saying the appointment was for me and could he come with me as I was nervous about it.  Sure.  The doctor and I cooked it up.  The doc pretended to examine me with blood pressure, heart and breath sound screening and then said to my LO; "Well; since you are here, let me check your heart and BP too," and the exam was done.

This of course is just one person's experience; but it is an example of fiblets and secret steps taken  to get matters tended to.   We were at a stage where such machinations were necessary. Like getting my LO to the Elder Law Attorney; I could not say it was for the DPOA: had to say it was for, "Estate Planning."  And spoke with the Elder Law  attorney prior to the appointment explaining things and he had worked such issues before. Our "Estate Planning" was done and atty pretended that I had a POA for myself with my husband as my DPOA person; we then had one done for my husband with me as the DPOA.  The attorney of course shredded the DPOA for me and I had a valid one done a bit later.

So much energy spent doing such strange but necessary things and  it got matters done and settled.  Risperdal was the life changing med that  brought things to a level that was so much better; not perfect, but SO much better. NOTE:  If you wish your LO to be placed in a care facilty, it is most easily done when being discharged from a hospital.  An ambulance simple takes the patient from the GeroPsych to the care facility which fiblet wise can be described as "rehab."  Done.  Trying to admit to such a facility from home is much more difficult on several levels.

You will find ways to work around the challenges and it does take a bit of being brave when first using outright fiblets, but once done successfully I certainly found it to be a gift that got things done and also kept my LO from agitation and melt downs much of the time.

J.