Sudden Extreme Anger and Paranoia

AZ-daughter

My dad is 83 and was diagnosed in 2020. He had a fall/deep stroke mid-December 2022 that ended in ER, then rehab. He was very confused and weak. His house was clearly not being maintained and he was not taking care of himself. He has almost no short-term memory. I did not feel he could go back home so we looked into AL. He lived an hour away so I told him if he lived closer to me he would see me more and I could assist more. He agreed. 

He moved in last Friday and everything seemed fine. He is feeling better because they are taking great care of him. Now the last couple of days he insists I kidnapped him, he is in prison, he is going to hitchhike back home, and that my brother and I are trying to take all his money. My brother lives in another state. I am the only family here to help him. My dad is very close with his sister and she was completely on board with AL so he would be safe. But as of an hour ago she says maybe he should go back home, because his anger is wearing her down. 

I have spent every waking hour of the last month taking care of things for him and I am about to have a nervous breakdown. My whole body is shaking while I type this. I am his POA and trying to manage his care, his 2 houses (snowbird), and his finances along with my life and full-time job. I can't go backward and undo everything I did to get to this point. The facility suggested Memory Care because of the dementia diagnosis, but he is still able to do things for himself so I wanted to try AL first. Now I feel like maybe I made the wrong decision. I don't know how to navigate this. I don't know what resources can help me. I have asked the facility multiple times but they are short staffed and don't have social workers to intervene. I am afraid something bad is going to happen. I would be so grateful for any help/resources.

Phoenix1966

I think many of us children/grandchildren didn’t know what it was going to be like to hold POA for their LO, especially when the LO has some form of dementia. It can be heartbreaking work. 

I went through something like this with my grandmother. She was never a pleasant woman, but the dementia amplified her anger, paranoia and venom by ten at least. She was living in a level 5 hoarding situation in her home, hadn’t paid bills in months/years and was slowly starving since she didn’t eat most of what Meals on Wheels brought her. There was no way she would let me place her(she held the only copy of the legal and medical POA hidden somewhere in the house under stacks of trash). I begged APS to intervene and they didn’t. I was about to petition for guardianship when she had the catastrophic fall I knew was coming and this time, the fire department had to crawl over and through a mess to get to her(when she set her stove on fire a month before, they didn’t see all the mess). They took her to the hospital and gave me the magic phrase to give me time to find a MC facility that “there was no safe discharge plan in place” and the hospital couldn’t release her. 

This now meant I didn’t have to worry about her agreeing to a move to a safer location, which she would have verbally and maybe physically fought. She would later be discharged directly to MC, where the fiblet was it was a nice, rehab facility, doctor-ordered where she would stay until better. 

Why tell you all of this?

Because you have done most of the work to keep your dad safe already. Don’t undo it because of his sister. Follow your instincts. Your dad chose you to make the hard decisions. But I would suggest you move him to Memory Care. AL is great for people that only need a little direction and if the AL is short-staffed, as you described, he won’t get enough attention. Also, MC facilities are locked, so there is no wandering. If, in your dad’s failing mind, he feels like he’s been kidnapped, he could just up and leave. AL won’t stop him. He’s not going to get better, only deteriorate further as time goes on.

It is a lot of work, but once you place him in MC, give him a few weeks to get settled. I would suggest he not have a phone in his room(staff will always make calls for him) at least for a while and you and your aunt should not answer very often. Let him settle into the routines the MC provides. Eventually, you should be able, for the most part, to go back to being his daughter and not the caretaker.

You’re not doing any of this to him, but for him to keep him safe. 

M1

Welcome to the forum.  What you've done is a common thing, the wanting to try AL first.  But almost certainly, MC is what he needs, sounds like the facility folks told you that, but naturally you were hoping otherwise.  You will probably be a lot better off if the level of care matches his needs.  Don't undo what you've done, just correct it.  Good luck.

AZ-daughter

Thank you so much for sharing your story and understanding all I am going through. Every time I feel I have taken one step forward, something takes me two steps back. While I have POA I have heard you cannot force someone into MC unless you have guardianship, which is a very difficult road. Do you have any experience of how to navigate that? My brother agrees with the plan, but as I said my aunt may be against it.

Phoenix1966

I am not a lawyer, so I cannot speak to what powers you may or may not have. It will depend on your state’s laws for admission to a MC or SNF. My medical POA was adequate because I had both her PCP and the hospital discharging my grandmother on record stating she was no longer mentally competent to make her own healthcare decisions. So, two doctors declared her incompetent. That allowed me as medical POA to make the placement decisions without her input or permission.

And, while my grandmother was quite paranoid and hateful, she did respect doctors and their recommendations. So, being told she was being moved to a “fancy, rehab facility covered by her insurance(it wasn’t, but I told them money was a trigger for her)” was all she needed to go along with the placement. 

Read through your POA(hopefully you have medical as well as legal) and see exactly what powers they grant you. Contact the lawyer that drew them up if you have additional questions. Get in writing from as many physicians that have seen your father to write something up regarding his competency. If your father is like my grandmother, maybe having someone from the AL staff tell him he needs some additional, doctor-ordered rehab at a facility that specializes in it, he will go along willingly with the move.

 
Fiblets, as many call them, will become your constant companions for a while. Staff at most MC are familiar with redirecting residents and will support whatever story you needed to tell him to get him to move. 

But definitely read all the paperwork you currently have to understand what authority you currently hold. Your dad trusted you with a lot by granting you POA. You can do this.

jfkoc

Please check that you have a         durable power if attorney...

AZ-daughter

Thank you again Phoenix1966 for your insight. It sounds like your grandmother had a lot in common with my Dad. Money is a trigger for him as well, so I might need to use that fiblet I do have durable POA for Mental as well. I got to talk to a social worker today and they did reassure me I am within my right to move him to MC. He said if I really wanted to avoid any possible risk I could (as you did) have 2 doctors declare him incompetent. With the comments from the group here I feel more empowered to keep moving ahead. This is the hardest thing I have gone through in my life. I was a remote caregiver for my mom who was in an SNF, but it was nothing like this.

Phoenix1966

AZ-daughter, I’m glad the social worker helped to ease some of your worries. 

You will want to start looking at MC facilities now, because beds are not always readily available. If you have the option, try for one close to you so that you don’t have to manage his care from a distance.

I would suggest that, if you haven’t already done so, contact a Certified Elder Law Attorney. If you’ve never seen one before, you can usually get an initial consultation for free. Memory Care will be more expensive than AL because of the additional care provided. You mentioned your dad has two homes, so I suspect he will not qualify for Medicaid, which can help with costs if the MC facility has any Medicaid beds available. 

A CELA will be able to advise you on how to apply for Medicaid, if your dad does not have it, and may be able to help you protect some of your dad’s assets. Lawyers can be a bit expensive, but CELAs are often worth their weight in gold in navigating this tumultuous sea. 

Be prepared to potentially have to put up at least one home on the market to help pay for his care if your dad doesn’t have any long term care insurance.

It can seem very daunting, so try and parcel out one project at a time for yourself. You can do this. 

AZ-daughter

Phoenix 1966 My dad definitely won't qualify for medicaid. He has lived a privileged life and can afford the cost for MC. I am very lucky that is one thing I won't have to navigate. I did have to do that with my Mom, so I know exactly what you mean. 

As far as finding a MC, the facility he is in has 2 MC units he can move to once needed. That was one thing I looked for when finding the AL. So while it still will be stressful for him to move again, at least it will be in the same building he is now. Thanks again for your support.

Phoenix1966

I’m so glad to hear that you have at least one (very big) piece off the playing field with some financial security. I would still reach out to a CELA to see if there are ways to stretch his assets, just to be safe, but it doesn’t sound like that’s an immediate concern.

And how smart of you to find a facility where he could graduate to MC when needed. I would move him as soon as possible, since he hasn’t been there too long. Tell him it’s a nicer room or there is a wiring problem in his current room or whatever fib works the easiest for you all so he can settle into his new routine. 

What a great job you did. 

BassetHoundAnn

Hello, AZ-daughter. I know exactly what you're going through. I went through the very same thing with my mom when I moved her from her home to a quasi-assisted living residence. She was calling the police on me, calling relatives to complain, insisting she'd been kidnapped, etc. It was pretty horrible. I was told by those at the facility that this phase would last about 3 months before she settled in. With my mom it lasted 6 months before she started to calm down. 

The magic paper was a statement of mental incapacity signed by two doctors who examined her. That together with the durable POA and medical POA were enough to handle every situation, both medical and financial, that came up. 

In fact for about a year I carried copies of those papers with me everywhere. 

I felt incredibly overwhelmed, as well as utterly, utterly exhausted and depressed. Dealing with my mom's craziness, the dozens of calls a day--from her, from the facility, getting her to the doctor umpteen times, dealing with all the financial stuff, including selling her house. It was just horrible. It wasn't until I got her into a memory care facility that life started to calm down. I definitely suggest going in that direction. 

You need to ignore his sister. Moving dad back home is not the answer. In fact that would be very bad. 

The start of this journey is overwhelming for everyone. It's not something you ever expect to have to handle. It's not something you ever plan for. Juggling the finances, the paperwork, the doctor visits, etc. is one thing, but toss into that mix having to deal with the emotional toll of managing someone who's going to pieces with dementia is an incredible burden in itself. I often felt I was on the verge of a breakdown. I often wanted to call social services and say I can't deal with my mother any longer, someone else is going to have to step in and serve as her guardian. I'm exhausted and I can't do it any longer. Getting her into memory care was a huge positive step in getting my life back. 

There are lots of people on this forum who will give you great advice. You've come to a great place. 

CanyonGal

The first couple of months after you move your LO into a facility is HARD. You will feel guilty, wonder if you made the right choice, but stick it out. His problems are not going to disappear or get better, only worse with this disease. 

I moved my mother into AL first, but when she hit stage 5 Dementia, I had to move her to memory care. It was in the same facility, so the aides and staff were familiar faces. 

She absolutely hated it when I moved her to memory care. She had stopped eating to the point where I requested a hospice evaluation. She refused to go to activities or walk. AL was not helping due to staffing issues. BUT Memory care had her eating again and walking. And every time I thought of placing her back in AL, she does something that confirms that she is where she needs to be.

Don't look back, keep moving forward. Unless his sister is willing to be his devoted caregiver, taking care of all his needs, she needs to back off. And don't feel bad if you want to try AL first. If he can get into a routine in AL, then it might work out. 

AZ-daughter

Hello BassetHoundAnn! I am so sorry to hear what you went through - but thank you so much for sharing. Reading your post was so therapeutic to know what's happening isn't unique to me. It was SO aligned to what I have been experiencing I thought I wrote it! You hit the nail on the head about the emotional component piling on top of the daily POA responsibilities and being their caregiver. I wanted to call social services the day I posted here! I was curled up in a ball in bed mentally paralyzed to making any more decisions. My nervous system has been so fried I feel my teeth chattering. You and others on this forum have been lifesavers. I have taken a step back this week because I was told me just being there might be triggering his outbursts. I am so glad because I really needed the mental break. The facility has gotten a team together to work up a routine for him to see if we can keep him in AL. I am hopeful, but I realize now that at some point MC is inevitable.

AZ-daughter

CanyonGal thank you for your note. The thought of this going on for months is a bit overwhelming, but at the same time I am relieved to know it's normal. His constant anger is what makes me second-guess my decisions. But now I know that anger comes from the disease. My dad has never yelled at me a day in his life. The facility has been really great and is now trying to figure out a routine that will help him adapt to AL. But he has always rejected the idea of AL. So while I am hopeful, there may be no ounce of him willing to make it work.

jfkoc

Please make certain that a UTI test with following culture was done...

MN Chickadee

First have him checked for a UTI. They are extremely common in the elderly, and can be otherwise "silent" except for new behaviors. A sudden change in any behavior warrants a UTI check. For my mother the sign was always falls. For many it's aggression or a significant loss of cognitive function and skills. 

If the doctor does not find an infection or other physical cause for this behavior it is likely time for memory care and quite possibly a look into pharmaceutical interventions. A MC facility may not accept him if he is combative. Or he may just save that for you, sometimes a PWD saves their worst ire and behavior for those they are closest to just like a little kid and do ok with facility staff and other people. Many PWD do very well with some medications to get behavior under control, make daily care possible, and improve quality of life. This is best tinkered with by a geriatric psychiatrist or other doctor experienced with dementia. Some PWD get to a point they have to do that inpatient at a senior behavioral health unit to get stable and then be released to their home or MC facility. Hopefully it doesn't come to that but keep it in the back of your mind. I would be working on getting him into MC immediately. The AL facility has given you the warning shot that they can't handle him, eventually they will likely ask him to leave so get your plan in place. It could be with the proper supports and structure that MC offers he will settle down. Sometimes when a PWD is trying to survive in normal life and settings they get so overwhelmed by all the little things they can't handle that it amps up anxiety and getting them the right level of care eases the situation. And sometimes happiness is just elusive for them with the brain damage going on and all we can do is make sure they are safe and well cared for. It's hard, I know. Memory care is a scary step to take and many of us wait too long because it is so fraught with emotion and grief, not to mention the logistics. 

Good luck with everything and keep us posted. 

AZ-daughter

MN Chickadee Thank you for your note. The bad behavior is saved only for me Otherwise he is mostly pleasant and has had no issues with staff. His facility has memory care on the next floor, so it's not an issue to move him and he won't be kicked out. They are evaluating him regularly to see if AL is working. He goes to the dining room 3x a day no problem and even started going to the workout room. I think having him locked in MC would really make it much worse at this point. We did get a NP that specializes in elderly mental health and she is looking at meds. First up is to make sure he is sleeping through the night. I will be talking to a social worker today to see if they can help with the transition, but the facility has really been doing a great job helping to acclimate him considering he is AL. So while I am hopeful, I certainly learned one thing from this group, this disease is unpredictable and what worked yesterday may not work today.

jfkoc

Please cheack for UTI with a culture asap and please let us know how you are doing.

VKB

Home is always better for those we love, but often they progress to needing round the clock care. Some can do this and others can't.  Some find good help to depend on while others can't.

When my mother who had dementia lashed out with her hand to hit the doctor, he put her on a low dose of anti-depression/ anti-anxiety medication, and it helped greatly with her moods.  Read the side effects, and I'm sure you and the doctor will make a good choice for your Dad.

I prayed for you, your dad, and his sister.  God is faithful to guide us.

pamela.l.booth

I sympathize with you! I am basically in the exact same situation, except that I'm an only child so it's just me and my husband. My Dad is saying the same things and when he was thinking logically he would tell me that he trusted me to the ends of the earth because if he didn't he wouldn't have given me all his log in information and have me pay all his bills after my mom passed away in 2020 but now.... Lord, give me strength, because it's so hard to hear him say that he made a mistake by putting me on all of his accounts and everything.  I also work full time and my husband stays home with my dad while I work full time.

AZ-daughter

@VKB Thank you for your note. My dad refused to have anyone care for him in his home and I lived too far away to do it. So unfortunately AL was the only option. The doctor just prescribed him hydroxyzine, so I am hopeful it will help with the mood swings. Thank you for the prayers - it was a rough day yesterday

AZ-daughter

@pamela.l.booth Wow, we might have the same Dad! LOL   My brother is completely uninvolved so really it is just my husband and I doing the actual caregiving as well. I empathize with you for caring for your Dad at home. That must be so difficult. I am grateful I am able to step back when I need to. My Dad used to say the SAME things about me - 'She takes care of everything for me / just give it to my daughter to sign / etc'. He also gave me all his passwords a couple years ago when his doctor said he needed financial assistance. Yesterday he said he needed his computer back because he feels fine and I didn't need to do it anymore. Sigh. This disease is so painful to watch. It's my Dad, but I know it's not my Dad.

efecik

Thank you so much for your post. My situation is exactly the same as yours, except, I moved my Dad into my home and it has been very difficult. To him, I'm the enemy, he was in the hospital for three weeks in December 2022, then in a rehab for 2.5 weeks. He says I locked him up in a hotel room for a month and me and the doctors made up lies. I just don't know what to do.

AZ-daughter

efecik Hi and welcome to the group. Sorry you are going through this, but glad you found us for support. It sounds like both our Dads when into the hospital 1-week apart and followed the same path. It is very typical for people with dementia to turn on their LO's so try not to take it personally. I know that is way easier to say than do, so hang in there. Google 'Anosognosia' which is very common with dementia. They really believe nothing is wrong with them, it's part of the disease. Do you have any options to move him into a facility? If so, you may want to start looking so you feel ready if he becomes unsafe at home and needs advanced care. Praying for you and your Dad.