How do I get my husband out of garage!?

M1

FHL, this is quite similar to what triggered hospitalization and then memory care for my partner two months ago.  Except it was over cat food, not returns--but physically threatened me when I wouldn't give her the truck keys.

You need to prepare a written statement of exactly what happened to give the neurologist when you go--don't try to discuss this in front of your DH--and be prepared to hospitalize him.  He probably needs it, sadly.  

toolbeltexpert

FHL thanks for the update,I am so glad for you.

Faith,Hope,Love

Well, I guess I spoke too soon.  It's starting all over again.  He's telling me that he's going to the grocery store today to return a bunch of items right after lunch.  I'm just ignoring him right now.  But, he says after lunch he's going to be asking for the car keys.  I think I'll slip another sleeping pill in with his lunch pills.  Maybe that'll chill him out.  I can't believe I have two more days to deal with this until Friday.

M1

FHL this sounds very similar to what landed my partner in the hospital and then in memory care in March.  Ours was over cat food, not returns, but involved physical threats when I would not give her the truck keys.  May I suggest that you make a detailed written record of what happened and give it to the neurology staff and doctor to read when you go in--you do not want to discuss this verbally in front of your DH.   You can disguise it as a medication list or some such if you need to.  Or you can call the office ahead of time and give them a heads up.  But you need to include the fact that you felt threatened and that you are having a hard time managing it at home.  And you need to go prepared to hospitalize him; sounds like he needs it, unfortunately.  What happens after that depends on whether they can stabilize him.  Good luck.

Joydean

FHL, please please listen to all the great advice you have been given!!  Two years ago my husband was wanting to kill his self. We have always had guns. They were all locked in gun safe. Dh did not know the codes. This man would not hurt anything. When I would not open the safe for him he threatened to hit me with a walking cane. I got out of the house just as the police got there. None of our 3 kids could get through to him. He spent a week in a mental hospital before they got his meds straight. You never know what will cause these types of reactions. For your own safety and his, LISTEN to what you have been told by all these caregivers. Please!!

ButterflyWings

FHL, I worry that you need more support sooner than Friday. I occasionally use liquid melatonin as a stopgap between his antipsychotic doses. I don’t know that a sleeping pill will protect you again (and he may not even swallow it). It definitely isn’t addressing his brain and behaviors asap which can be very, very dangerous.

***Please do read Lady Texan’s well thought out safety list at the link HB sent. Leave and call 911 if you need to. Better safe than sorry. You said your friends have disconnected? 

Faith,Hope,Love

Thanks M1!  I called the doctors office this morning to see if I could speak to the doctor privately regarding this situation.  The nurse told me that during the first appointment that wouldn't be possible.  She said I could do a Telehealth phone call after the first visit but that would be after he comes back from vacation.  (Apparently he's leaving middle of next week).  I remembered your suggestion earlier and asked if I could give him a paper indicating everything that's been happening.  She said I could, but that he'll still want to bring this all out in the open.  She said he's going to be asking both of us a lot of questions during that first visit and everything will come out in the open then.  I mentioned that it sounded like it could be very confrontational.  She said it can be at times.  I mentioned giving him a sleeping pill and she said try to keep him calm if you can until Friday.  She said it only gets harder.  So, I gave him another sleeping pill.  I hope and pray that calms him down.  In the meantime, I changed my tactic.  I didn't tell him he couldn't have the keys.  He thinks they are lost.  And since he usually keeps them in the garage, he's looking for them out there.  Maybe that will keep him busy until he gets tired from the sleeping pill.  It keeps him out of my hair for a little while, since I'm a nervous wreck over all of this. I've never been thru anything like this.  I'm just overwhelmed at the moment.

M1

It's unfortunate that this is a first visit.  But I would take what the staff says with a grain of salt.  If the doc has good judgement, s/he will recognize a volatile situation when s/he sees it.  Of course you can't count on that, but i would still try and go in with a written record.  And I would put a packed bag of his things in the trunk of your car.  They may well send you to the emergency room--that's what happened to us, even from our long-term doc's office and we spent seven hours in the ER before she was admitted.   We had to use the excuse that her blood pressure was really high (which it was) to get her to the ER.  But in both places, I had a written message on my phone letting them know that she had threatened me.  

Take copies of any living will and powers of attorney with you (I needed both).  

But I have a sneaking suspicion that the visit Friday may not yield what you want.  You may have to call 911 and have him transported to the ER involuntarily.  Believe me, I know all too well how painful this is, but your own safety is paramount and it truly doesn't sound like you can manage him under the current circumstances.

Faith,Hope,Love

Butterflywings and Joydean.  Thanks!  I'm trying my best to do what everyone has advised.  I know that you guys have a lot more experience than I do and I so appreciate your advise.  I couldn't make it thru this without you.  I think I've found all the guns and have hidden them.  I hope I've hidden them well enough.  I don't have any liquid melatonin.  But, the sleeping pill is a natural one with herbs and stuff.  It contains 3 mg of melatonin in it.  Maybe that will help.  We absolutely have no friends left.  I guess they weren't really friends to begin with.  What little family I have left (sister and a niece) is in New Jersey.  I've been emailing my sister and she's very worried.  My DH has family in Ohio but doesn't talk to most of them.  So, I don't feel comfortable contacting them.  I'm basically dealing with this alone.  I've got my phone in my pocket along with some ID.

dayn2nite2

Even if he didn't threaten to kill anyone at the grocery store, he is still having delusions and I think you need to make sure your phone is charged and with you all the time so you can call 911 if you need.

Faith,Hope,Love

Thanks M1.  I have a feeling this isn't going to go to well Friday, either.  This guy is going on vacation the middle of next week and I would think he's not going to want to start him on any meds.  Just a guess on my part.  Hopefully I'm wrong.  I'm preparing a written record right now.

He doesn't have a living will or a power of attorney.  He always felt he was going to live to a ripe old age and didn't need that.  Fortunately, most everything is in both our names with the exception of a piece of property.  We're trying to sell the property right now.  I probably need to find out what I have to do to be able to handle that sale.

Thanks for understanding how painful this is.  My heart is breaking, my head is hurting and I'm scared, nervous and a whole bunch of other things. 

Faith,Hope,Love

dayn2nite2 phone is charged and with me.

ButterflyWings

FHL - you are doing GREAT actually. If you can grab a cup of tea or something for yourself, please do that small self care while working your way through this. 

Good for you in changing tactics to play dumb about the keys. I have helped my DH look for lost things many times

I’m so disappointed at the RN’s description of the visit. Hopefully the Dr. won’t set up, or allow a confrontational dynamic since that’s not the best way to deal with PWDs at all. None of our docs did that. Ever. Though some other professionals did, and DH stormed out, left me and locked me out. His words were “you betrayed me!” Took a while to regain his trust and that was long before delusions, hallucinations and threats began. No way would I engage with him adversarialy (sp?) at that point.

We are pulling for you! You are not alone. Our posts are not to scare or overwhelm you at all. Just to share what help we got (or wish we had) when we were in the same situations. It sounds like you are making good use of his time in the garage though I do hope he won’t find things that can harm you or him. My DH puts anything and everything in his pockets now. He’s to the point I can reach in, check them & remove what he’s found if a screwdriver, superglue, or whatever that I may have missed in my safety proofing the house. I know you can’t do that right now. 

Good that you hid the guns. Knives and anything else that can be weaponized have to disappear too, as soon as you get a moment. Keep breathing! And do read Lady T’s safety plan. It saved her life and her DH’s. Thinking of you...!

Faith,Hope,Love

I feel like I'm sitting here waiting for the other shoe to drop.  His moods are yo-yo-ing right now.  He's ok with giving fluids to the cat, but grouchy about other things. We have a 16 year old cat with stage 4 kidney disease.  Unfortunately, she gets Sub Q fluids every few days.  I had to bring him in from the garage to give her the fluids.  I don't know how to do it.  I'll have to have him show me how to do it.  But I have to tell you that sticking a needle in a cat isn't my idea of anything I would ever want to do.  But, for her, I'll suck it up.  I love her so very much.  In the meantime once he gets back to the garage maybe I can do some more de-weaponizing.  I notice he has a stack of stuff in the garage again to return.  Maybe I can throw some of it out when I take out the garbage tonight.

I called regarding his long term care plan today.  They needed his ok to talk to me regarding the plan.  I got him to sign a letter saying they could always talk to me from now on.  So, I guess I'm making some progress.

Jo C.

Dear FHL, I am so very sorry for all that is happening and can well understand how severely stressful and exhausting this must be.

Please do read M1s Post again; M1 is a physician, has a partner in a similar situation and completely understands from both a medical and personal standpoint.  What M1 has said is the best approach most likely to deliver the best outcome.

I am an RN, Administrator of Patient Care Managment in acute med centers; I also have had a mother with FTD, a step-dad with Alz's, and a MIL and GMIL with Alz's.  Never, with multiple dementia specialists and many appointments, have I ever had an office staff member state such things re the not keeping something confidential especially when it has potential for harm.  Hard to believe she was being accurate.

Do write your detailed outline of what has been happening; do NOT minimize anything; be frank.  Express the feeling of being in physical danger due to the delusions, hallucinations and acting out.  Must express any feelings of danger.  When you arrive at the doctor's office, excuse yourself to "use the restroom," when getting past the door to the inner hallway, get a staff member; give them the detailed outline and request they give it to the doctor asap AND ask him to read it before he enters your husband's exam room.  I cannot imagine he would not do this. Also in the outline, I would mention that IF the specialist felt your husband required a short term stay in Geriatric Psych in order to do an adequate assessment on the 24 hour continuum, that would be acceptable as you live in a rural area and he has severe agitation and acting out, often in a dangerous manner, and it is difficult to obtain assistance or medical care.

I am so wishing the best outcome for you and as said, do not minimize anything. IF and I say this hoping it is not so; IF that staff member was correct, you have no other option but to first make a statement to the doctor if he commences with an open line of questining that  such openness can be possibly dangerous after leaving the office. If the doctor persists, frankly; I would then be open and honest as otherwise the appt. is worthless. I so hope that does not happen.

If the doctor decides to admit your husband to GeroPsych, that would probably be the most desired outcome at this point; if he/she does not decide to admit, I feel medication will be prescribed.  Even though this physician will be going on vacation, there will be another Neurologist covering the practice for him/her. If admitted to GeroPsych, a Psychiatrist, not the Neurologist will then be the primary physician managing the care as it is a Psych Unit.

I send you my heartfelt wishes for the best outcome re this; let us know how it goes, we will certainly be thinking of you. NOTE:   If however, there is actual danger to yourself - please do contact 911, let then know your husband has dementia and  that you have locked yourself in a room until they arrive. It is not shameful to have done so; it is the right thing to do for the both of you.

J.

jfkoc

Please get your husband to an urgent care for a UTI test with culture. Your husband's behavior is spot on for a silent UTI which left u ntreated can be fatal. My husband had one...I know how dangerous they can be.

This does not mean that something else is the problem but please get this ruled out and do not think for one minute that he will not hurt you. You must have a safe room and your phone must be kept charged at all times.

Quilting brings calm

When you call 911, do not mince words.  Do not sugarcoat the situation,  

Tell them you are in fear for your life ( weapons in the home).  Tell them he is a danger to himself or others ( weapons in the home, and and and all comments he has made).  Tell them he is delusional and hallucinating.  When  you get him to the ER. Repeat all this along with’I can not take care of him in the home at this time as it would not be safe for him or me’.   

The point of this is that you must firmly and repeatedly say everything that will impress upon them your fear of imminent danger.  Any sugarcoating will allow them to decide you aren’t all that fearful. 

My LO opened the back passenger door of our truck at speed on the interstate because she thought the dog needed to go for a walk.  We took her straight to our local ER and I ( in a panic) took  them I could not take her home.  She was  admitted and a UTI was diagnosed in an hour.  It took several days for her to become lucid. We later found out she had actually  become  septic because her doctors up until then would not believe she had one.   Every day she had gotten worse and worse regarding delusions, sundowning, panic attacks, poor hygiene, not sleeping etc. 

Joydean

FHL, wishing you all the best. This road we are all on is very hard, it’s scary, and it hurts like hell! Please take care of yourself. Prayers for you and your dh. 

Faith,Hope,Love

Thanks to all of you for your support!  I've read and re-read your posts so many times.  I'm trying my best to do the things you've suggested.  Some of them will take a little time.  But I wish I could give each of you a big hug in person and say thanks for all the help. 

He calmed down a little bit yesterday afternoon and was fine all evening.  This morning he woke up with the repetitive behavior going again.  He kept rambling on about going to the grocery store to make returns.  I slipped him a sleeping pill in with his breakfast and that calmed him down.  He's been pacing around the dining room table for the last 2 hours and has quieted down.  I did discover that he's also been shoplifting.  I did some laundry this morning and there was stuff in his pockets we didn't pay for.  I didn't accuse him of anything just asked him if he knew where it came from.  He told me it was stuff they were giving away.  When I thought about it, I can see the progression of his disease.  He used to talk about certain stores we shop having better sales than others.  That progressed to everybody knows me and says hi when I walk in the store (which doesn't happen).  That progressed to all these certain stores have great buy 1 get 1 free sales.  Now he's showing me stuff he picked up on other visits.  He says he loves shopping because they give this stuff away.  They call him their buddy and basically shower him with stuff.  So, I can know see the progression of the delusion.

Anyways, tomorrow can't come soon enough.  I've been working on my letter.  I want to make sure I don't sugarcoat anything.  I can see me doing that. This is a difficult letter to write.  Please keep us in your prayers, as I pray for you and your dear ones also.

ButterflyWings

Thanks for the update FHL - you are doing the right thing to be very specific in the letter. 

You may want to include up front that you are writing to avoid discussing in your DH's presence as it could be dangerous given his rage and inability to determine right from wrong at this point (obvious by the shoplifting - criminal behavior that has landed many people in the clink, especially if trying to return or "sell back" stolen goods). 

Stay safe. It is hard to walk on egg shells but you are smart to do things like asking where the items came from without accusing -- that is wise. Acting like we are playing along, while rapidly putting protections in place -- that's what we do. Glad that you are ok this morning and we will be counting down the hours till tomorrow's appointment time with you. Is there a Plan B if he won't go, or if they don't prescribe anything on this first visit?  

As others have said, you may need to call 911 at any point -- today or even after the appointment. Please don't hesitate to do that if needed, and don't feel bad about it. It may be the only path to get help for both of you.  Just be very clear that he is ill and a danger to himself and making you fearful that he may harm you, by demanding keys to a vehicle he cannot safely drive, having delusional thinking, and audio hallucinations (God is talking, giving him specific instructions). That he needs to be transported to ER for stabilization, that you do not feel safe given the aggression and agitation of his dementia progression. *This is the bottom line for your Dr to understand also actually. No vacations until they address his extreme agitation, anger, and aberrant behavior. (It still sounds partially like a UTI may be a factor). But regardless, his behavior can't be managed by sleeping pills much longer. Good luck to you! Praying with you.

Faith,Hope,Love

Thanks Butterflywings.  I never thought of a Plan B.  I guess I got so wrapped up in Plan A that it never occurred to me.  Oh boy, that does add a whole other dimension to this.  Thanks for your words, I'll be using a lot of them in my letter.

M1

Please do be careful and keep us posted.

You will need to ask them to help you get powers of attorney.  Since they are not already in place, it will affect what happens:  hospitalization will likely have to be involuntary, which puts time limits on it.  Please do ask about that.  I know you feel overloaded, but it may matter.  

toolbeltexpert

Fhl I just want to add that covid is my goto reason for all kinds of things. Like not going in the store I use pickup instead. This is probably the number 1 fib in the dementia realm of fibs. Someone ought to write a song about it.

Faith,Hope,Love

Thanks M1!  I'm making a list of things I want to ask the doctor. I just added POAs to the list.

Thanks TBE!  I've tried the Covid fibs.  They work to some degree with  him, but not with shopping.  Because of Covid he doesn't want anybody else touching the items he's buying.  He's very good a getting around things.

My big concern regarding tomorrow is that he can be very charismatic and charming.  He can pull off acting normal for a while.  I'm concerned that the doctor will not see any of the irrational behavior.

harshedbuzz

Faith,Hope,Love wrote:

My big concern regarding tomorrow is that he can be very charismatic and charming.  He can pull off acting normal for a while.  I'm concerned that the doctor will not see any of the irrational behavior.

This would be my dad. During a visit to his geripsych he was joking in Yiddish with the doc who hold dual American and Israeli citizenship. FTR, dad's mostly Irish-Catholic so not expected. 

What helped his doctor see what we saw at home-- and obtain the increased dose of Seroquel-- was a video clip of dad accusing and threatening me that I made with my phone. That phone you have on your person? If it's a smartphone hit the record button. Even if you don't get a good picture, the audio should help. 

ButterflyWings

FHL, it sounds like you are going to be well-prepared. I would definitely take HB's advice and try to record your DH the next time he is screaming at you (hopefully he won't keep that up) or any of the inappropriate behavior or conversations, even if just agitation or persistence about going to the store.

Is this the Dr. who diagnosed him with dementia? And also is "treating" the lead poisoning? I see both of them are linked to aggression, impulse control issues, and can even include violence. 

It shouldn't be a stretch for that Dr to believe what you are experiencing...they should expect progression in the dementia anyway -- and act to avoid patient safety and caregiver safety issues. You just have to be firm that it is urgent, and that it escalates when at home alone with you. Also that it can get him in serious trouble with the authorities for the "shopping/ shop-lifting/re-selling" fixation.

Faith,Hope,Love

Thanks ButterflyWings.  I haven't had a cell phone in ages.  We had to get my husband a new smart phone since his was an old 3G and T-Mobile doesn't support that anymore.  I should have realized that this would become my phone.  So, now I'm trying to figure out how to record audio, but so far I can't figure it out.  He doesn't use the new phone.  He just putters around with the old one.  He can still take pictures and use the timer on it which is primarily all he does.  I'm reading the manual. Ugh!

I have my sister reading my letter to the doctor. She understands the situation and used to be a school teacher.  So, if it's not clear or needs something she'll be able to let me know.

I fractured my hip in October of 2020.  DH had to pick up a lot of the slack around the house because of so  many things I couldn't do while recovering.  That's when I realized that he couldn't do much.  It just kind of came crashing down around me.  He was also a registered nurse and couldn't figure out how to change my bandages.  Because he kept bragging to home health care that he was a nurse, they stopped coming.  Bottom line, I ended up changing my own bandages.  After I recovered from all that, I had him go to our PCP because something was obviously wrong.  Our PCP ran tests in 2020 and determined that he was lacking in vitamin D, B12 and a few other things that could cause dementia like symptoms.  He then took it a step further and did a 6 hour urine test that showed the heavy metal poisoning.  He's loaded with heavy metals, but the lead content was very severe.  The PCP also had us contact a neurologist.  I'm guessing that he suspected dementia at that point.  The neurologist I found was a poor choice on my part.  He ran a bunch of tests and  got the diagnosis correct but didn't agree with us as far as chelating the metals out of my husband.  He said it was a waste of money and he didn't see any heavy  metals in the blood test that he ran.  I delicately and diplomatically explained that I thought blood tests only indicated what was contained in the blood stream and that a urine test would show what was contained in the tissue.  That went over like a ton of bricks.  So, at that point he wanted to put him on Namenda and see him in 6 weeks.  Our PCP said at this point we just needed to get a diagnosis, and we did.  Our PCP said he thought it better to chelate as much of the metals out of him as possible, balance out his vitamin D, B12, etc. and stabilize him prior to adding in other treatments.  He figured if we reduced as many variables as possible than we'd have a better idea of what we had left to work with.  At that point, we weren't having any of the behavior issues.  So, it made sense.  We've also tried a couple of peptide treatments that didn't seem to help.  Then, a few months ago is when everything just kind of came tumbling down and we have all of these behavioral issues.  At that point, our PCP said we need to consult a neurologist and let him know you're seeing behavioral issues, auditory hallucinations and repetitive behavior.  So, that's where we're at.

ButterflyWings

Got it. Boy, you have really been holding things together well and doing a lot of heavy lifting for a while. If I had surgery, this little house of cards would fall apart in hours. That happens a lot, when the CG goes down and it becomes obvious how much they are doing for both. The PWD's deficits become very apparent without the extra support and scaffolding. 

And no blame, fault or guilt in this caregiving role, OK?...you had no way of knowing how this neurologist would proceed. We all are kind of "feeling our way as we go" unless we have contacts in advance. I just lucked out in that regard. Great neuro team. But our PCP was really not knowledgable nor interested in learning, so we had to make a switch there. He was used to this super healthy elder that he saw 1x per year and marveled at his youthfulness and clarity. (He actually was side-eyeing me for a while, as I became more and more insistent that more diligence was required. But I stuck with it and DH was compliant until anosognosia set in.)

Sounds like your PCP is pretty sharp. Their guidance below is really clear...maybe quote him/her in the letter for tomorrow? "our PCP said we need to consult a neurologist and let him know you're seeing behavioral issues, auditory hallucinations and repetitive behavior. " It tells your neurologist you are following another Dr.'s recommendation as well as your own 24/7 observation & experience with your DH's progressive decline (plus M1 is a physician +spouse/caregiver, as our RNs here that also have direct life experience with dementia -- you've actually gotten a lot of professional advice from experienced dementia caregivers).

***On a different note -- recording on your phone. You can google it, but the easiest way may be just tap the camera icon, and then choose video, and hit the button to start recording. The audio will help even if you can't point the phone at DH to capture clear video.

You can do this on most laptops or computers too. 

Faith,Hope,Love

Our PCP is an amazing man!  He is an integrative doc.  He is an MD and also uses herbs and supplements.  I started seeing him in 2014.  I had such extreme fatigue that I was "couch bound".  He tried several therapies that helped and got me off the couch, but didn't cure me.  He tried several things, but nothing really worked that well.  Finally, I took a different approach and stopped seeing him for a few years.  He had mentioned once that teeth can sometimes cause a problem. I had fillings and crowns that were over 30 years old.   I found a holistic dentist who said most of them were leaking.  I got everything replaced and all the metal removed.  It took more than a year to gradually clean everything up.  Even though it didn't entirely solve the problem, it was better.  I still wasn't as good as I should be so I went back to the PCP.  He said multiple times, I've learned a lot in the last few years.  I give that man a lot of credit for being so humble that he didn't know how to fix me, but thought he could now.  Anyways, he discovered that I have EBV (epstein-barre virus).  Apparantly most docs ignore that because most everybody has it to some degree.  But, mine was definitely interfering with my life.  I asked why my immune system didn't kill it.  He said, probably because it'd been there so long and couldn't kill it off that it just got used to it being there.  My lab reading was off the chart.  He started me on some anti-viral herbs.  It's taken a couple of years to get me cleaned up.  But, I'm definitely feeling like I should.  My biggest problem is realizing that even though I still feel like I'm in my 30's I live in a 67 year old body.

ButterflyWings

Dear FHL- we will be thinking about you tomorrow as you head to the appointment. Hoping and praying for a smooth process and good outcome. You are on the right path. No way but forward! Don't know if you had a chance to see ToolbeltExpert's post entitled "To My Friends", but it was about his first time visit to the neuro with his DW just today. It went well. 

I know what you mean about our outsides not matching our insides any more lol. If only there were do-overs and I was 30 again, knowing what I know now. I remember what Matt Roloff of LittlePeople Big World used to say: "If only...then things would be different". Let's hope we survive our LOs' disease and make it another few decades in good shape, which can happen. That's my goal now so I can say "well, here I am at 90-something, but I don't feel a day over 67 on the inside!"

Stay safe and stay strong. You got this.