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Now that my divorce is final (there's still a 21-day "appeal period" after the court date), I'm basically in limbo waiting for ex to be placed. Now that my friend has back peddled on sharing a house, I'm back at square 1 as to my future.



I'd hoped for quick placement which would give me maybe until year's end in the rental house, using peace and quiet to regroup and plan. But no end in sight yet and I'm getting creeped out.



Monday morning, I found him up and around when I got ready for work at 6 AM. Usual rise and shine for him is noon. He was puttering around in his room. I asked what he was doing, and he replied, "I'm looking for my knife." I thought he meant his jack knife, which he's always misplacing.



I came home at noon to find him trying to turn on the pellet stove, and complaining he couldn't get it going. Last fall he poured a whole bag of wet pellets in it which gummed up the works, then ruined my vacuum cleaner trying to suck the sodden mess out. I had to have a guy come get it running. Since then, it's been finicky and only I know how to get it going. Thank God!



I told him to leave it until I got home from work. I went to his room to get him a hoodie to keep warm. I found the knife he had been looking for on his dresser. It wasn't his jack knife. It was a big old hunting knife in a sheath. I took it and hid it in my room.



When I got home that day, the vacuum cleaner was in pieces. He said it wasn't working so he took it apart to "fix" it. I had vacuumed just that morning and there wasn't a thing wrong with it. I put it back together and it was fine.



I noticed he had a cut on the bridge of his nose and asked what happened. He told me that he was attempting to take an A/C unit into the cellar. But the unit was right where I had left it. He then explained he slipped on the wet grass and fell on his face. So ... he was outside. Not trying to go down cellar. OK. Why was he outside? His response was that face he makes when I'm being an idiot.



He was fine all evening until he went up to bed and tried to take his walker up the stairs. I told him no twice, then had to just take it away from him. Once upstairs, I fished his jack knife out of his pants pocket and hid that, too.



It was 1:45 AM when my bedroom door opened and woke me up. He was standing there, fully dressed. He reached in and turned on my light. I asked what was wrong and he said "nothing". I told him to go back to bed and he refused. He got verbally combative, but after a while I was able to convince him to go sit on his bed while I called hospice. They told me to give him some lorazepam and to call if it didn't calm him down. I sat with him for 45 minutes until his breathing calmed and then went back to bed. He still wasn't asleep, though. I locked my door.



They sent two nurses out Tuesday morning, his usual and a male nurse. Ex was out cold. They did vitals and I asked if it was another UTI delirium. They didn't think it was. They feel that it was a decline in his condition. Once I told them about these events, they said that he's not safe at home and they'd talk to the team about what can be done to expedite placement.



That's good, because I don't feel safe, either! Between the knife search and him coming into my room, I'm not liking this.



Ex didn't get up until noon today (more than 36 hours in bed) and seems back to baseline. I was hoping this decline was going to be enough to place him, but now not so sure as he's in his right mind and mobile again. I can't take much more of this, but I have to get my ducks in a row. I don't want to make a desperate dash out and end up homeless.



I took him to sell his handguns months ago. I've hidden all the knives I know about. I'm now locking my door at night.



Has anyone here dealt with these weird episodes? Did you feel unsafe?He's been diagnosed with a "Parkinson's plus syndrome" but I didn't think that causes dementia or bouts of way-out behavior.



Ugh!

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No. You are very likely not safe where you are. If you have no one who you can stay with, go directly to an abused womens' shelter.

Call the police from work and tell them that you need a cop to go with you to pick up some clothes and other things from the house. That you're in the process of a divorce and you're afraid to go to get your stuff alone.

Then do not return to the house unless someone goes with you or the cops do. Don't take a chance. If your gut is telling you to be afraid, listen to it.
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ThisIsNotMe Nov 9, 2023
BurntCaregiver, thank you! If things go south in such a way that I'm afraid rather than wary, I will do everything in my power to be safe. I do have pets, so that's an issue, but I'll figure that out if/when the time comes. I was checking here to see if anyone had experience with wandering patients and what they did about it. But it looks like the thing to do about it is get out or get them out. I'd prefer he went, but I may have to go first! Then circle back around once he's out. This seems like a plan.
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I would call Hospice and tell them that I was needing to call 911 because he is a danger to himself and others.
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ThisIsNotMe Nov 9, 2023
Hi, Barb. Yep. I talked to the hospice nurse this morning before she came in to see him (he's been upped from one nurse visit a week to two because of this) and reminded her about my having to remove weapons and that he's not just a danger to himself, but could be a danger to me and at the very least I'm so stressed I have to see a therapist and take meds for anxiety and depression. Which is only too true! They're supposed to be pushing on getting him placed now. But if something hinky happens again, I'll just do what I have to do and let the chips fall where they may. Thank you!
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You're living with a demented man who has knives and possibly other weapons. He may be extremely angry that you divorced him. Yes, I would say you are definitely in danger.

My first and best advice is to not spend any time in the home. I get that you don't want to end up homeless, but better homeless than dead, I always say. Can you stay with friends? How about a domestic violence shelter for women? Is a hotel or rooming house out of the question?

If you can't do the above, go to a hardware store and buy a simple wedge to put under your bedroom door. That's a good backup for the lock, which anyone with a little screwdriver could probably unlock. You could also buy a simple bar lock. Make it a heavy-duty one. You'd have to drill holes and screw it into the door frame. Use longer screws than the ones that come with it. The bar shoots across the space between the door and frame. A person at the hardware store can explain how to install and use it.

Domestic violence is a serious problem in our society. Take it seriously. I wish you luck, and please let us know you're okay as this progresses.
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ThisIsNotMe Nov 9, 2023
Thank you, Fawnby! The reason I'm spooked is because of the rampant domestic murder-suicides all over the place these days. He's never been a violent, or even an angry person, and he agreed amicably to the divorce. I was wondering if I was just being paranoid so wanted to know what others may have experienced with people suffering from cognitive issues. But you never know what direction the mind may take in one of these episodes. The last time he got up in the middle of the night and went downstairs, it was to poop on the staircase and the bottom landing because he thought the bathroom was downstairs. But I woke up hearing him moving around and not because he opened my door. As it happens, I bought a couple of those locks you described because I was going to put them on the basement door to keep him from going down there - a totally mobile person in their right mind could break their necks on those stairs, and he wouldn't stop going down there. It only needed one lock, so I'll install the other on my bedroom door. Thank you for your response and your good wishes! I'll keep you posted as things develop.
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Do what BarbBrooklyn says - call hospice and warn them that you are leaving and will be calling 911 to alert them that he is in the house and may have access to a knife (or even guns if you didn't get all of them out of the house.) Don't hesitate because this could all go very, very bad in a heartbeat. Once he's out of the house - permanently - you can regroup and figure out your next move.
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ThisIsNotMe Nov 9, 2023
jkm, thank you! Yes, this could be the way to do it. I can get some time off from work and visit my sister until he's out. Light at the end of the tunnel!
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Because I've never heard of Parkinsons Plus Syndrome maybe others haven't either...

"What is the difference between Parkinson's and Parkinson's plus?

Parkinson-plus syndromes are characterized by the primary features of Parkinson disease, including bradykinesia, ataxia, resting tremor, and rigidity but also include additional features such as dementia, cognitive deficits, and cranial nerve impairment."

Source: https://www.ncbi.nlm.nih.gov/books/NBK585113/#:~:text=Parkinson%2Dplus%20syndromes%20are%20characterized,deficits%2C%20and%20cranial%20nerve%20impairment.

Does he have Lewy Body dementia? If so, he can experience hallucinations. My SFIL had this and threatened to kill us because he was imagining we were doing something nefarious to him. We had to find and clear out a handgun and hunting rifle he had. Shortly after this social services acquired guardianship for him.

I agree with others that it is not safe for you to be there. He could use a hammer or blunt object on you. Between now and the time you move out, call 911 if he becomes weird or agitated or makes verbal threats, pounds on your locked door, etc -- never mind giving him more medication. I wish you all the best as you move forward with your life!
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NeedHelpWithMom Nov 8, 2023
I was confused by this terminology too. As most people know, I cared for my mother who had Parkinson’s disease.

She did develop dementia in her later years but she was never a threat to any of us.

At one point in time, we were very concerned because she was wondering at night and would try to walk out of the front door in the middle of the night.

Her doctor ordered Ativan and Seroquel and the wondering stopped.

She would have vivid dreams. I think sometimes she would mix up her dreams with reality.

Mom would tell us that a little girl was visiting her. When I asked her if she was dreaming about a child, she would say, “I saw her first in my dreams and then she would appear to me when I was fully awake.”

She continued to see this child until she died in her end of life hospice care home. The hospice staff told me that they would hear stories from their residents all the time about seeing people that weren’t there.
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I cannot advise you as I would have left already. Reporting to 911 a man, alone, unable to selfcare, seeking weapons, dx with PD, possible dementia, delusions &/or paranoia.

l would remove my belongings to the gagare & stay there. Possibly sleep in my car there until he either left the premises or I found alternative accomodation. If he could access the garage, I would leave the premises entirely.
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ThisIsNotMe Nov 9, 2023
Thanks, Beatty! We have no garage, so that's not an option. I do have a good lock on my bedroom door. He's never been threatening, but once he's losing cognition I guess all bets are off! There are plans afoot by hospice to set up him in the room downstairs that I use as an office, complete with hospital bed and portable commode. Which means I'm going to have to clean it. But there are three stout locks on the door to the staircase, so once upstairs and he's downstairs I'd have no problem sleeping! I'm trying to figure out my options as I have nowhere to go at the moment. But it sounds like installing him downstairs would be the safest route for both of us until I can find a stable living space for myself.
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If he isn’t able to be placed somewhere immediately then I would pack up my things and temporarily move out.

I know it’s inconvenient to have to leave your home but it is better than not being safe.

Notify others that you will not be returning to your home until after he leaves.

I hope that you can return to a peaceful life soon.
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ThisIsNotMe Nov 9, 2023
NeedHelp, I hadn't thought of this! I don't have anyone I could move in with temporarily, and I do have pets. But if I maybe took a couple weeks' vacation from my job and go to my sister's place ... Yikes! That might do it! Thank your for this suggestion!
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Well, if you are waiting for someone to ask you to join them in their home, I guess you will be waiting a long time, and your divorce will have accomplished exactly nothing.

You need to leave, and I don't care where that is to. Your things go into storage and you go to shelter and get a job and work until you can afford a room somewhere if you have no assets of this marriage.

As to him? You report him as a senior in need to APS if that is necessary and you stay OUT OF IT. Let THEM get him placed and be his POA with guardianship of the state.

You need to take responsibility now for being there. It is time to go whether you are in danger or not. As to that, the answer would be your guess good as mine, and with the whole knife story I guess I would be pretty worried.
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ThisIsNotMe Nov 9, 2023
Thank you, AlvaDeer! I have a job already. It's just that it doesn't pay enough for the crazy rents around here. That's why I'm looking at my best options for maybe moving elsewhere and starting over fresh. Or taking up a second job to stay in the area. My divorce accomplished severing that bond between us. I feel better with that, at least! And now my income isn't factored into anything having to do with him being eligible for services, and I'm able to keep my savings intact. Hospice is working to place him, but yeah ... if this decline doesn't cut push him to the top of the list, then I'll have to make a move. In the meantime, I'm putting a better lock on my door. Even if he doesn't do anything violent, it's unsettling having someone walk into my room like that.
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You sound just annoyed he’s acting like this, and that you just have to deal with it until you find a new place.

If you have to ask if you’re safe, then you aren’t. You’re not realizing how dangerous this situation is.

Follow the advice given here and get out. NOW!
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ThisIsNotMe Nov 9, 2023
Hi, LoopyLoo. I AM annoyed. And fed up. And tired. I'm trying to deal with this as best I can because I don't have a great deal of financial resources to work with. Believe me, if I had a windfall, I'd be out and calling hospice to come get him! I have no family here, and some friends - but none who could spell me while I find a new place. The only family I have left is back in the midwest, outside Chicago, which is extremely expensive and they live in a small apartment with no room for one more. I've had to make jumps in my life before, and am trying to make the best move I can. Whatever happens, HE will be taken care of. The state will see to that in the end. I need this time to, for once in the 12 years I've known him, think of myself for a change. That being said, if things continue to deteriorate, I'll have to take a leap of faith whether I have a place to go or not. Thank you again!
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I don't understand why hospice is moving him to the basement. What happens when you move out? Will they finally do something at that point? This makes no sense.
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ThisIsNotMe Nov 11, 2023
Hi, sp196902. They want to move him to the first floor, not the basement.They feel he's unsafe going up and down stairs to his bedroom. They feel it's safer for him to be on the ground floor, in a small bedroom, with a commode until they can place him. When will that be? That's anyone's guess! I'm trying to get him placed before I go simply because he has no one else to help him and I don't want it on my conscience later on. But things aren't moving toward that, and I may have to give up, figure out where I can go and what to do and then tell them he's alone.
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