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Rhetorica Asked December 13, 2023

How do you manage/navigate rage in individuals with dementia?

Currently, my mother is in SNF. Prior to moving her into LTC, she was in assisted living for close to six years. She has a host of chronic health conditions. My family and I decided to move her into LTC after several repeated falls with the last fall producing seizures. Since being on the seizure medications, certain personality features have been magnified, such as her rage and anger. I received a call this afternoon from the charge nurse stating that they placed my mother on suicide watch because she has been repeatedly stating that she wants to die. In truth, she has been saying this since last May when things don't happen fast enough or doesn't get what she wants. For example, because the housekeeper changed the position of her bed, she now wants to die. Because of her rage, she's also attempting to run people over in her wheelchair and has hit several of the staff. She also takes her rage and anger out on me and my partner when we visit. The repeated exposure to her anger and rage has made it challenging for me to visit her. Most of her anger and rage at me is related to her being placed in a SNF - wants to go back to her assisted-living facility. Because of her conditions, she cannot take SSRIs or SSNRIs because of low sodium. She also can't take antipsychotics because of afib. Our last resort has been xanax, which she has been on for several years, but neurology prefers for her not take scheduled doses of the medication. Her doctors have also recommended memory care, which I have called a few facilities - ones that take Medicaid. Unfortunately, there are waitlists. Other memory care facilities are cost prohibitive even if she still was private paying. So, until a space opens up, we can't move her into memory care. I'm afraid that the facility will kick her out because she is the "problem" resident. What other things can we do to help manage/navigate her rage and anger? She wants a phone, but she often calls emergency services when she doesn't get what she wants or things don't happen fast enough. So, no phone at the moment. She likes to watch certain television channels but she hasn't been interested in watching TV since moving into SNF. They do have activities at the facility, which she often participates in, but it doesn't seem to be enough or not enough for her. She doesn't like puzzles. We try to show her pictures because she likes pictures, but this only entertains her for about five minutes. She likes music, but she hasn't been that interested in listening to music. Instead, she wants to rage. Finally, prior to her last fall, we did utilize hospice services because her psychiatrist recommended this. The assisted-living facility was short of staff. The facility was having a hard time supporting her. Unfortunately, hospice didn't work out.

BarbBrooklyn Dec 19, 2023
There comes a point where there are no good choices, only the least bad one .

I would opt for the best psych medication available for her symptoms and to heck with the side effects. Your mother deserves some peace.

I would not do PRN antianxiety meds. Have them given on a regular schedule --it takes a far lower dose to PREVENT anxiety from ramping up than from treating it once it has gotten up a full head of steam.
Rhetorica Dec 19, 2023
Originally, she was not PRN on xanax. However, over the course of the falls, various doctors, and a doctor who feels uncomfortable in making changes, it's now PRN twice a day with a scheduled dose at night. When I speak to neurology, I will discuss with them psychiatric medications and see if there is something that she can take. Technically, one of her seizure medications is supposed to be an indirect mood stabilizer. It's not doing that.
againx100 Dec 13, 2023
For telephone, look into Telecalm. I have it for my mom who is in AL with moderate dementia. You can set up so no calls to 911 - it can call the nurses station or you instead for example. You can limit the phone numbers that can call in to eliminate scammers. And limit the hours of the day she can make phone calls or how many times she can call the same number with X minutes. I LOVE it!

Does the xanax help her? Is it prescribed as an "as needed" med that has to be asked for? If so, that's CRAZY!! She obviously needs a med that will calm her waaay down from her level of rage. Push for that. Real hard. I would talk to the doc at the SNF to see what they suggest. Your mom certainly isn't the first difficult patient they've had.

Why didn't hospice work out? She didn't qualify? Was this before or after the falls and seizures?

Best of luck.
Rhetorica Dec 13, 2023
Originally, she was on 0.25 mg three times a day scheduled at ALF. And she was fine. She got irritated at staff or anxious sometimes but she was, generally speaking, okay. Last April, her sodium tanked because of trying ambien because she was having a hard time sleeping. She fell in the middle of the night; she dislocated her right arm, fractured her thumb, banged up her knee, etc. She was sent to rehab and went back to ALF. Two weeks later, she fell because of a UTI. Thankfully, no breaks, but because of the UTI, they decided to admit her to the hospital. The internist felt that she needed to be withdrawn from the xanax - take a scheduled dose at night and PRN during the day. She then developed a phobia of falling. She was sent to rehab. She got better. She went back to ALF. She started to develop severe anxiety to the point that she was hysterical on the phone. After two weeks, the psychiatrist felt that she was taking a downward turn and needed additional support through hospice. She did qualify for hospice. Hospice was great! But, my mother fell really hard again twice. The first fall caused her to have a broken collar bone. Hospice started her on tramadol, which lowers seizure threshold. They then increased her xanax to 0.5 mg twice a day and 1 mg at night to control her anxiety. My sister came down to visit her. My mother fell twice that morning before my sister arrived. When my sister arrived, my mother fell really hard on her face and head. She was bleeding out of her head. So, we decided to take her to the hospital, which means we had to revoke hospice. Her sodium dropped again. She was in the hospital for about a week. She was sent to rehab. Within 24 hours of being in rehab, she started having seizures because of the fall in addition to her seizure threshold being lowered because of tramadol and the increased xanax. Because the rehab facility is closer to me, she went to a different hospital. After the seizures, we decided that it was best to move her into LTC part of the SNF. She never went back to ALF, which is two counties away. Neurology doesn't want her on a lot of xanax because of its ability to cause seizures. Does it help her? I'm not entirely sure. It used to work for sure. I don't know if it works as well now. Since her hospitalization because of seizures, we really haven't thought about hospice again because of the medicaid process, moving her, trying to get adjusted, etc. We also had another hospitalization at the beginning of November because of another UTI infection and cellulitis infection. Although I might have seen a partial seizure, last about 10 seconds, I haven't seen any major seizures, which is a good thing, but she's pretty miserable.

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AlvaDeer Dec 19, 2023
Your only hope is a good try with medications and medication cocktails and this will have to be supervised by neuro-psyc facility/MD.

I don't know what you mean by "Hospice didn't work out". Hospice doesn't take on care. They send someone to bathe twice a week, an RN once a week briefly and usually a phone call from social services person and clergy if wanted. They give medications to be supervised by caregivers. They do little else anymore now they are a part of the military industrial complex and owned often by Hedge Funds. They are profiting off of huge amounts of Medicare money, but you are on your own with care.

I think your loved one will need transferring to neuro psyc. I agree with the need for Hospice. She needs comfort care now. She wishes to die and has nothing to live for. You should support and honor her wishes. So get hospice back so she can receive medications, if for no other reason.l

I am so sorry. This is a dreadful way to end. I hope you can find a way she is brought peace. Whatever you do, do not allow any family to try in home care. Whatever facilities they must use they must now use. With the help of hospice hopefully she can be helped.
Rhetorica Dec 19, 2023
I did speak with the palliative care team at the hospital when she was hospitalized with the seizures. If need be, they said that I could reach out to them again if I needed guidance. When she was at ALF, I did personally know some folks who worked with several hospice agencies. But, I live in a different county, but I can try to reach out to them again to see if they can provide resources here. My mother did like hospice when she had hospice. She liked the visits, the help with showers, and seeing a clergy person.
Midkid58 Dec 19, 2023
You sure she's not my MIL? This behavior pattern sure sounds unpleasantly like her.

My MIL has been on a varying cocktail of antianxiety drugs/sleeping pills & tramadol for pain for almost a year now. It is the one and only way she can have her wish to stay at home as she transitions to the next life.

DH is so uncomfortable giving her these meds. He'd rather sit for 3 hrs and be screamed at than give her one Xanax. He still believes he can 'talk sense' to her. Well, that ship sailed a looooong time ago.

I know so many people who are just terrified of any calming meds. But they definitely have their place in our lives.

Sounds like your mom really doesn't HAVE a choice. She has to be semi-sedated all the time to maintain residency in her 'home'. She's not that special. She doesn't get to make life miserable for the other patients. Doubtful she 'gets' that.

I have no clue why my MIL has begun raging at people. Probably another step down in the dementia process---DH refuses to accept that she HAS dementia and simply says she's 'crazy'. Yes--she is, most assuredly, but it's not fixable.

If your mom kicks up enough fuss in the NH, she can be evicted. It'd be better to work with her drs behind the scene to get her on a cocktail of meds that keep her calm.

With my MIL, something as simple as the CNA moving the bandaids from one shelf in the kitchen to the shelf ABOVE caused a 4 hr complete and utter breakdown. DH said she wasn't making sense and was being nasty and completely out of it. Did he give her a Xanax? Nope, b/c he thinks it's wrong to drug her. Well, sucks to be him--he had a lousy night with her and after he left, I guess SIL showed up and drugged mom to the gills.

Nobody is going to care if you have to use meds to keep your mom calm and as functional/compliant as she can be. Anyone who would be judgmental of that needs to spend a couple of days with an elder who is raging out of control.

I wish you luck. This is not fun for anyone and not pleasant in any way, shape or form.
Rhetorica Dec 19, 2023
Well, based upon the medication, my mother is scheduled to have one in the evening, but the other two are PRN. Now, they should know "when" to give her one, but I suspect that they don't always catch it in time. If they can get ahead of it, she's okay. She still doesn't like the place, but she ain't screaming at people, running people over in her wheelchair, or hitting people. But, that's the key, I think, is trying to catch it. Her ALF was good at that for the most part, the SNF, not so much. When they don't catch it and she gets too hostile, they give her an ativan shot, which knocks her out of the ballpark. My mother has a thing with sheets on the bed. If the sheets aren't to her liking, she has a fit that will last for the rest of the day. Or if the bed isn't elevated just right or too high or too low, she can't sleep. I don't think taking a low dose of xanax, ativan, and/or klonopin is a bad thing. In truth, I'm fine with my mom going back to scheduled doses. More so, it's PCP and neurology that feel differently. But, see, this is what I don't understand. If they are so apt to just give a shot, why not the scheduled doses?
LilyLavalle Dec 19, 2023
STOPPING Xanax abruptly can cause seizures, but Xanax does not cause seizures. It sounds like your mom needs a long acting benzodiazepine, like Klonopin (same type of med as Xanax) that she takes on a schedule and not "as needed". Just like with pain medication, it is better to stay ahead of the symptoms rather than treat them as or after they occur. I am not a medical professional. Her doctors should be addressing these issues. This sounds like a very difficult time for you. I wish you the best.
Rhetorica Dec 19, 2023
I agree with the staying ahead. It's more so if her doctors will listen. The PCP at the facility is not really apt to listen to me. We have yelled at each other before. Her PCP at the ALF was great! She listened to me. The one at SNF doesn't listen to anyone.
Fiberspop Dec 19, 2023
With holding psych drugs for other possible possibilities ( A fibEtc) is not helping her. If she is “never going home” then help her feel better by getting her on some meds that can give her mental relief….Seroquel may help as I believe its also given for seizures, She needs a geratric oriented neuro psych. She is striving for control over her life. rage is based in mental pain . Finally you can thank wayward docs and addicts for the legal surveillance now enforced on addictive drugs
Rhetorica Dec 19, 2023
She does and has had a geriatric psychiatrist for several years. I'm not saying that they are not beneficial. They definitely are beneficial, but in this current facility, the geriatric psychiatrist can only make recommendations which are forwarded to PCP at the facility. And this PCP doesn't give a crap about anything that I say. We've already had some shouting matches.
MargaretMcKen Dec 19, 2023
OP, you know much more about medications than I do, but it sounds to me that you have ruled out some drugs because they may have dangerous side effects. Your mother’s quality of life sounds very low. Would it be such a bad thing if side effects brought it to a close earlier?
Frances73 Dec 21, 2023
Interesting point.
CaringWifeAZ Dec 19, 2023
Rhetorica, sounds like you are experiencing a lot of stress from this situation. And that your mother may be using your anxiety to try and manipulate you. She's obviously not happy at this facility. Perhaps there are other SNFs in your area you can take a look at. All SNFs are not the same. One may have a more pleasing environment or more amenable staff.
I am not a doctor, but I agree that xanax is not a good solution. I have been caring for my husband at home for 8 years. He is aggressively resistant to all cares, and has been kicked out of 2 nursing homes for behavior. We have tried many different medications with the hope of calming him. I found that regular use of xanax was causing more anxiety because it is an addictive drug, and he was extremely agitated when he was craving his next dose. So, I weaned him off of that, successfully.
I will tell you the medication which has been like a miracle drug; Trazodone. Ask her doctor about it. Not only did it help to calm my LO, but his leg tremors stopped completely.
I would also suggest you spend some time at the facility, I mean hours at a time, so you can get a sense of how well she is being cared for. She may be neglected if she's difficult. She may be afraid of someone there. Or, she may simply be acting out, hoping you will give in to her requests. You may not be able to satisfy her. If you are confident she is in the right place, and there are no better options available right now, she will need to accept it, even though she may be very unhappy about it.
If you know she is in good hands, and you are doing everything you can for her, relax a little. Don't let anyone manipulate your emotions to get you to acquiesce to a situation you will regret.
Rhetorica Dec 19, 2023
Yep, this has been the issue with the xanax. She's been on it for so long that this was considered a possible catalyst to the seizures, i.e., withdrawal. Neurology wants to limit it. At the same time, the epilepsy medication seems to have magnified her feistiness. She has done rehab at this facility four times. The rehab part is absolutely excellent. The long-term care part is not as good. However, they do know me there. I tend to visit her two to three times a week. I check in with the nurse. I always ask for a medication list. I'm constantly speaking with the social worker and the director of nursing. The PCP hates me, but I speak with him as well. When we first moved her into the LTC part, I was there almost everyday. I don't know if she's in the right place. I'm getting mixed messages. Some folks think she's a better fit for memory care. Other folks think she's still good for assisted living. There's just not a lot of consistency when it comes to things. Today, I toured five different places. Either they're not a good fit for her or they're cost prohibitive. And I'm at a loss as to what to do. I have come to the realization many times that this may be what it is because it is what it is. It's really frustrating though to feel like I have very little agency anymore. Options are not really options if they don't exist. I suspect that some of her feelings of wanting to die is a way to garnering attention, but if I was her, I wouldn't want to be there either.
ConnieCaretaker Dec 19, 2023
A Geriatric Psychiatrist can evaluate and medicate.

BurntCaregiver Dec 19, 2023
If she's in the nursing home for life then giving her medications that can help her rage and anger is worth the potential risks involved with taking them.

What kind of dementia does your mother have? Is there an actual diagnosis? Or is it just that's she's old and difficult to handle so memory care it is?
I'm asking this question not as a judgment on you or your mother but because memory care is a terrible place to put a person who still has any of their own faculties left.

Her doctor can prescribe a liquid version of Ativan (lorazepam) that can be given to your mother as needed. When she's starting up, she can be given a dose. She could also benefit from being on a low-dose daily of it too. Or some good, old-fashioned Valium. There are options that can help her.

You also have to look at the picture from another angle. Your mother is sick, she lives in a nursing home, and she's miserable. What quality of life is that for anyone? When she says she wants to die, she has good reason to want to and it may not be the mental illness talking. It may be the reality of what her life is.
Rhetorica Dec 19, 2023
From what I know, she has been diagnosed with Alzheimers and/or moderate dementia. Although we have seen various doctors, cardiology, neurology, psychiatry, nephrology, hematology, gastroenterology, there hasn't been a desire to figure out what kind of dementia she has. Prior to these falls, she was taking 0.25 mg of xanax three times a day. If the facility (ALF) got ahead of the agitation, she was cool as a cucumber. The facility has no qualms in giving her an ativan injection if she gets hostile, but that's not necessarily a good thing either because this facility has potentially misused this tool. So, I'm not on a huge proponent of doping people up to just dope them up. As far as the dying part, again, we tried hospice. Because of the situation, it wasn't entirely a good fit at the moment. It certainly is something that I can bring up to some kind of doctor, but bringing it up isn't the same as them actually doing something. And that has also been an issue - I can think all of kinds of things about things, but that doesn't mean that healthcare professionals are going to listen to me about it. And that has also been an issue - healthcare administration and practitioners listening. I can advocate all day long, but it doesn't mean anything at all if it isn't persuasive.
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