Caregiver Burnout Warning

Posted by burnt2acrisp @burnt2acrisp, Mar 6, 2020

My husband is a 100% service connected disabled veteran with dementia – various doctors have advanced possible diagnosis ranging from Parkinson's/dementia, ALZ, to "He's certainly got SOMETHING."
A doctor with the V.A. recently told me we should file a claim related to Agent Orange. What? He's already rated 100% for PTSD. Back in the '80's the V.A. did send him tubes of an ineffective cream for Agent Orange problems on his feet which were deemed to have been caused by working on an airstrip in Vietnam for 13 months.
No meaningful testing to pinpoint the nature of the trouble has ever been ordered – either by V.A. or the 'outside' (non V.A.) doctors I first sought help from back in 1997 for what later proved to be early signs of "SOMETHING"
However that may be his cognitive difficulties were pretty severe by 2015, he hasn't known how to so much as get a glass of water in over a year. Mobility problems have greatly intensified in the last year. Still ambulatory if careful, but subject to 'locking up' and falling over if tired. One leg drags a little and often trips him up. Not able to manage a walker.
About this time last year he started kicking and pummeling me in his sleep. He didn't wake up or remember these episodes. Quit sleeping with him for a while, after about two months this phenomenon ceased and I was able to return to the marital bed.
I started assisting him at the toilet about 9 months ago. He was still seeking the toilet then but was prone to sitting down next to the toilet – FALL RISK – and always made a mess of the paperwork following b.m. He hadn't washed his hands on his own in a while.
He wanted my eyes on him at all times, demanding attention every three to seven minutes (I timed it with the chess clock) interruptions averaged thirty seconds if I tried to read a book. 14 to 18 hours a day. Katy bar the door if I didn't go to bed when he did.
In August hubby began experiencing mostly night time episodes of hostility and aggression, verbal and physical. Frequency and intensity increased over time and daytime bouts were often followed by non-stop pacing for up to an hour. Diversions and other tactics recommended in caregiver training videos worked infrequently…less and less as things rolled along. Most effective way to break his train of thought was to get out of his sight, often he would return to bed and go to sleep. While I sat banished to the living room musing about beds and peaceful sleep.
No support network to speak of. Family and friends disabled themselves or died off or melted away over the last three years.
V.A. doctors and social workers have told me Fear Not – Help Is On the Way at least 7 times in the last four months. Some promised home aides + occasional respite care, expect a call from them soon, some promised palliative care, expect a call from them soon. What's palliative care? They'll explain it when they call you…soon. Didn't happen.
When I described my difficulties and asked his dr. about medications to mitigate the aggression he replied that this was neurologist's job…4 hour drive, 90 days for appointment.
A digestive problem hubby had developed led to a month of very loose stools every 3 or 4 hours around the clock. I called dr.'s office with concerns about effects of constant diahhrea and sleepless nights forever – shouldn't the prescribed medication be changed or adjusted? The Care Team nurse said she'd put in a consult for the G.I. doc. at Regional, expect a call from her soon. Didn't happen. Very same G.I. doc who had told me previously to expect a call from palliative care soon. Didn't happen. (4th one to say Help Is On The Way) I stopped the stomach medicine on my own and the squirts ceased. Hubby's tummy doing ok now but too late.
Between the sleepless nights and constant squirts hubby not feeling well and mean as a snake. I'm not at my best either. Chasing me away from the toilet most of the time. I had installed safeties to prevent his falling next to the toilet but now he sometimes forgot to lower his drawers, or open toilet lid if I had forgotten to. The post-rage pacing now included the bonus of lavish distribution of feces every few days. When this happened hubby would consent to a bath, otherwise he often declined. Remember the aforementioned paperwork problem? Dirty drawers and hands, infrequent bathing.
The other day I had just finished cleaning most of a mess up and giving him a bath which he said he enjoyed very much. All going well until he threw another toilet fit, following me around yelling and forbade me to change the bedsheets. I lost it and started yelling back at him for the first time. When I came up for air and looked at him his whole body was shuddering, he was white as a sheet, eyes as big as silver dollars. I will never live that down.
It was past time to get off the boat. I went outside for phone reception…call the V.A….find out where can I take him? Hubby came out screaming at me. I sat in the truck on hold for 16 minutes 32 seconds while hubby floundered around the truck hammering on the windows and yelling at me to get out of his life. The phone dropped reception. So much for that. After a while he wound down, and I invited him to go for a ride. About the only activity he enjoys anymore. For the first time in well over a year he did not ask 'where are we going' every 5 minutes – didn't ask once on the 2+hour trip to Regional. Every few minutes he stroked my arm and said 'you hate me don't you?' I tried to reassure him..No I don't, I'm just tired. Between stroking my arm and asking the question he pressed his head against me. This went on for the whole trip – how's that for continuity of thought process? When we arrived he recognized the place. The look of pain and betrayal on his face was awful. Softly "You planned this didn't you?" but he went in with me and stood by while I asked the E.R. receptionist how to go about placing him in care. She condescendingly explained that this is not the place or way. E.R. would NOT take him. I must go through his Primary Care dr. and he would take care of it. I said that dr. hadn't taken care of much so far, if I should run away leaving hubby in the waiting room would they throw him out in the street? She said no, but CPP would be called in and I would very likely face criminal abandonment charges. I replied that if he won't use the toilet and won't take a bath does that not constitute neglect? Also subject to criminal charges?
All this in polite tones as if we were simply discussing a civilized subject.
I said "Dr. and others have been telling me Help Is On The Way for months but nothing has happened." She checked her screen and no doubt saw our recent dr. visit, and said 'there is no call in for services.' Now her eyes dropped and she looked flustered. 'Does he have a medical problem for which the E.R. dr. could admit him to hospital? She's sure that dr. could find a way.
No, no health problem that I know of that could be construed as an emergency.
A social worker is on call. Maybe she can do something. Hubby and I are escorted to exam room in back where we sit for an hour or so. The social worker arrives, probably having been told nothing more than that I had rolled in threatening to abandon my husband of thirty-something years. She promotes the Primary Care Doctor theory to me, I explain that several people including dr have been telling me for months that Help Is On The Way.
Now she's frowning at me. 'Who told you that?' I tell her. And about the person here at Regional who, back in Nov., pulled strings to get us in to Primary Care a month or more earlier than appointment in order to get the Help Is On The Way wagon rolling faster. The receptionist has checked, there never was a call in for the Help Wagon, they ain't going to do nothing.
She needs grounds for 'unsafe conditions' before she can do anything. Am I likely to hurt him? No, he's aggressive one, I'm afraid he'll fall while chasing me. Hygiene problems. Potential for illness.
She decides to sign an 'Order To Detain" whatever that is. Have dr. give hubby something soothing as he's getting restless wanting to go home. There's an outside geriatric psych ward specializing in finding proper meds for aggressive behaviours in dementia patients. Average stay 3 – 5 days, sometimes as long as 10. Meanwhile she herself will put in a call for services to get ready for hubby's homecoming. Home aides, respite period every two weeks. Expect the call soon, Monday at the latest. She goes away, not having offered me her card or copies of the relevant paperwork. No Help Wagon call came…chalk up another Didn't Happen.
When Nurse brought in the soothing shot she explained that some people were just relaxed by it, others might get a little sleepy. She rejoined the gaggle of nurses holding a gabfest at the nurses' station.
After a while hubby decided to move from the chair to the bed. About 18 inches. Rising with more difficulty than usual he turned to the bed and froze. He sank towards the floor but I got a knee under his butt and prevented a fall. I couldn't shift him. Totally limp with my knee pinning him against the bed. I yelled 'HEY' at the nurses whooping it up at the station 20 feet away. One of them looked at me but didn't move. Again 'HEY' now a couple of them looked and saw the position I was in. Did I need help? 'YES'
Four or five of them came and slid hubby onto the bed, which was raised to an almost sitting position. None of them spoke. They went away. Hubby was propped crookedly against the backrest, his head lolling to one side. He could move his eyes but that was it. Tugging on his shoulders I straightened him on the bed so his neck wouldn't be so bent.
What the hell did they give him? He's a 73 year old man with an undiagnosed dementia…or SOMETHING.
After a while Nurse returns to check hubby's blood pressure, affix a heart monitor. She went away. Hubby's eyes turn towards me and he whispers "You planned this. You hate me."
No baby I don't. I raised the bed's safety rail and rushed out into the night. It was midnight. I cried all the way home.

The people at the psych unit seem reluctant to answer my questions when I call next day. On Sunday I made the 2 hour drive to visit. When they brought hubby into the room he was walking hunched over, head nearly level with waist. He was pale as a bedsheet, eyes the size of silver dollars. He backpedaled as far as the aide assisting him allowed and asked me "Are you going to hit me?" no.
The aide said he would fetch the nurse to answer my questions. Didn't happen. Hubby sat twisting and pulling at one of his fingers as one does when removing a tight ring. He was pulling and twisting hard, the finger bent to an alarming degree. 'I'm trying to get this off' he explained when I asked.
'Please stop. You might hurt your finger'
He changed to a different finger, twisting and pulling. 'Who are those two guys?' he asked while indicating an empty corner of the room. I said I didn't know them. These behaviours continued for a while. Suddenly he sat quiet, looked at me and said 'I like it here. At first I hated it but I'm getting used to it. Now I like it here. Really I hate it.' The look in his eyes was the most lucid I've seen in years. 'How's your boyfriend? he asked.
'No boyfriend, only you' I said softly (NEVER ARGUE WITH THEM!)
He didn't contest the point, just gave me a dirty look and turned away. An aide appeared in the doorway asking if everything was all right. I didn't take to her demeanor. She went away. Hubby said that he and this aide didn't like each other. I wondered if she was the one on the phone who had expressed resentment at having to clean up one of hubby's toileting mishaps.
There was a little more talk. Some coherent, some not. Am I to believe that someone in the facility named Bobby thumps on him? Is staff to believe that I thump on hubby? I found no marks upon him aside from an impressive blood bruise from a labs stick (blood draw) maybe gone awry.
Two staffers have told me over the phone that they'd had trouble obtaining lab samples. Another scoffed and said that she'd heard nothing about difficulties. I know that hubby has trouble holding still when handled and I don't hold the ugly bruise against them. Finally speak to one who's willing to discuss the case in more detail. So far as my extremely limited understanding of such matters permits I think the blood values she emphasizes are pertinent to the meds they are trying.
I made phone inquiries every day for a while even though the staffers seemed not to like it. A couple bordered on outright hostility. 6 were contacted average call time 6 minutes.
I'm not really interested in attitudes or what their opinion of me might be. I found out what I wanted to know. Information sharing between caregivers appears to be excellent. I've seen very unfortunate things happen to patients in hospital settings when staffers aren't all on the same page.

I won't go see hubby again unless dr. calls and says I should. I expect this to coincide with the freezing over of hell. It was obvious that hubby is scared of me and didn't want the visit. Surely they didn't MAKE him attend. Having spent years attempting to shield him from stressful situations I will not induce anxiety in him now.
I don't know if I'll ever see him again. I knew that institution time was nigh but never imagined it come about like this. I think he could have enjoyed a better quality of life for a little longer if the system charged with his well-being had performed better.
Was it typical V.A. dysfunction…or was it (as some of my acquaintances maintain) deliberately done to save government money?
I'm confused and feel I've been duped by the system, face a penurious old age or worse, and feel an overwhelming grief and guilt for falling down at the eleventh hour.

I'm so sorry you had to experience this. I pray that you are all right and that your husband is improving. I didn't have to go through nearly this much but after my husband had kept me and my daughter awake for two nights. my kids said, "Mom, you can't take care of him anymore" and we mae arrangements for evaluation at the local hospital Senior Disruptive Behavior Unit, where they helped make arrangements for admission to a care center who took very good are of him.

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@burnt2acrisp

@becsbuddy, thanks for your concern. I did get hubby back for a while. In the form of an almost unrecognizable zombie. However after a good night sleep he improved slightly but exhibited several new behaviors I hadn't seen before. Cognition down about 60% compared to before. Mobility very poor. By day four I realized there was a problem with his medications. Symptoms listed in the 'Contact your doctor immediately if…' section of the info sheets supplied with meds. He had symptoms listed on three of the seven medications he came home with.
Upon discharge the hospital told me not to call them – follow up with V.A. Primary Care. On pain of death don't miss any meds.
Repeated 'call back' requests from both myself and the after hours telephone nurses at Regional produced no reply. No one at V.A. could locate the hospital records/meds list that at discharge the hospital told me had been faxed to V.A.
After a week I took him to the local E.R. and found that the rumors about E.R.'s across the land turning people away for anything short of car wrecks or Covid were true.
Called the after-hours nurses at Regional again who still had not advised me to bring him to Regional. They advised me to call ambulance and have paramedics evaluate him which I did. They couldn't really rouse him either – he would open eyes and mumble 'What'? then nod out again. He had been missing much of his meds and food and water because he remained too lethargic later and later each day. About mid afternoon he'd wake up but he was supposed to be getting pills all day from early to late.
Paramedics said his vital signs were good, he did respond briefly when shaken, they felt that he was way over medicated or else was failing to metabolize the meds leading to build-up in system. Reduce the haliperidol quite a bit, rest may be ok. While they'd be happy to transport him wherever I said…they advised against it as E.R.'s had other things on the mind lately.
Later and later Hubby was 'waking up' and his mobility was much improved with the reduced meds. Cognition still negative ten. Violent aggression magnified tenfold.
A few days later dr. sent a message saying that he'd have his nurse call next day. She did but was as disinterested in troubles as ever. She's done this type of thing before. Said she'd look around for the missing records and then talk to dr. about it if she got a chance. (I think the records came to her originally and she didn't upload to the system after a week and a half)
I called the call line nurses at Regional and pitched a f#$#king fit. They said if I didn't hear from dr. by 3:00 call them back.
He did call later only to say that nothing could be done. He still didn't have the missing records/meds list. E.R.s across the land were turning visits away…. cut the haliperidol and hope for the best. ALREADY DID!!!!
Day was pretty advanced by now and Hubby was up and doing. Difficult to speak to dr. cause Hubby hammering on the bathroom door and screaming at me to come out of there. He'd already tried to brain me with a metal pipe he'd found. Mobility much improved! I deflected the blow but it hit my knee and now on day 5 I can walk pretty good again.
Couple of hours later dr. called again. He'd spoken with a psychiatrist buddy about it (and I suspect Nurse had 'found' the missing records) and concluded that I should take Hubby to nearest E.R. right away. Been There Done That – any other bright ideas? He said he'd call and pave the way. He did so.
Finally got on the road and dr. called again and said to get ambulance if needed.
After a series of misadventures in the E.R. Hubby was packed off to another dementia unit. They wanted to send him back to the first but I said PLEASE DON'T.
New dr. says haliperidol wasn't main problem. Other meds contraindicated for use with patients having Lewy Bodies were responsible. The symptoms/behaviors Hubby exhibiting prove to dr.'s satisfaction that Hubby does have Lewy Bodies. They tell me that he is very sick but showing some improvement.

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@burnet2acrisp. How is your husband now. Has he improved since the medicine was stopped? And how are you doing?

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@becsbuddy, I'm not really sure how he's doing. This dementia unit is much better than the former one about discussing his progress with me. Unfortunately I get conflicting reports from various staffers. One thing I'm fairly sure of is that he hasn't attacked anyone in over 24 hours which is (I think) a good thing. When he attacks they get him down and administer another shot of Haldol. Then they call and tell me they did so – they say they're legally obliged to notify me I guess cause the Haldol is harmful to him. I fear that it is also excruciatingly painful to him since the oral form caused burning leg cramps followed by tremors so violent that his legs and arms jumped 6 inches off the bed the last time it was given. While he was moaning and crying with pain.
I gather that his appetite has not returned in full force, he no longer speaks, can't rise unassisted and one or two staffers are required to walk him. On the other hand another staffer told me that he's doing splendidly and is even participating in 'groups.' One says he hasn't hallucinated in 24 hours, another one says he never stopped doing so. These hallucinations of an uncharacteristic type were started by the drugs. Maybe it's the frequent Haldol shots he got in first few days there.
Also the diarrhea is in full force and they tell me they believe this is normal for a re-section patient. I was getting good stools out of him but the hospital is not up to feeding him avocados and fresh vegetables and so on…and never would have allowed me to bring suitable food. Down to 140 lbs. now. He can't make it on frozen chicken strips and french fries which is the example I'm given when I ask them what do they mean by assuring me that he's on a 'high fiber/high protein' diet.

QUESTION: I can't find any info concerning long term effects of first generation psychoactive drugs on Lewy Body dementia patients. He was on them heavily for well over a month. All I find are NIH papers saying 'don't do it'. Will request a callback from facility dr. soon to ask about the prospects. Other place always had the social worker call me instead of dr., we'll see…

For my part I'm getting along fairly well. It's heavenly to sleep if I want to, I've been out in the pasture every day getting trees off the fence and patching holes or even (gasp!) sitting and looking. A tweety bird plucked hairs from my head for nesting the other day.
I do get distressed if dwelling on Hubby's predicament. His life-long terror of hospitals and nursing homes has become his living nightmare. No escape either. But I may be at the end of my rope regarding keeping him here. The lack of help or respite condition is now reinforced by the Covid outbreak….but then again if he has turned into a turnip maybe he wouldn't require as much supervision. I think I might be a little more humane than a facility but am leaning most towards the opinion that I'd likely be killing myself for little benefit. I might keep him alive longer but this is not the life he wanted. Why bother with an Advance Directive when the medical providers are hell bent on disregarding it? They advocate diddling him to death with procedures on the chance that they can prolong a hellish existence. I often feel that they think I'm a baddie for saying that the terms laid out in the document should be conformed to. Could be my imagination too.

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@burnt2acrisp

@becsbuddy, I'm not really sure how he's doing. This dementia unit is much better than the former one about discussing his progress with me. Unfortunately I get conflicting reports from various staffers. One thing I'm fairly sure of is that he hasn't attacked anyone in over 24 hours which is (I think) a good thing. When he attacks they get him down and administer another shot of Haldol. Then they call and tell me they did so – they say they're legally obliged to notify me I guess cause the Haldol is harmful to him. I fear that it is also excruciatingly painful to him since the oral form caused burning leg cramps followed by tremors so violent that his legs and arms jumped 6 inches off the bed the last time it was given. While he was moaning and crying with pain.
I gather that his appetite has not returned in full force, he no longer speaks, can't rise unassisted and one or two staffers are required to walk him. On the other hand another staffer told me that he's doing splendidly and is even participating in 'groups.' One says he hasn't hallucinated in 24 hours, another one says he never stopped doing so. These hallucinations of an uncharacteristic type were started by the drugs. Maybe it's the frequent Haldol shots he got in first few days there.
Also the diarrhea is in full force and they tell me they believe this is normal for a re-section patient. I was getting good stools out of him but the hospital is not up to feeding him avocados and fresh vegetables and so on…and never would have allowed me to bring suitable food. Down to 140 lbs. now. He can't make it on frozen chicken strips and french fries which is the example I'm given when I ask them what do they mean by assuring me that he's on a 'high fiber/high protein' diet.

QUESTION: I can't find any info concerning long term effects of first generation psychoactive drugs on Lewy Body dementia patients. He was on them heavily for well over a month. All I find are NIH papers saying 'don't do it'. Will request a callback from facility dr. soon to ask about the prospects. Other place always had the social worker call me instead of dr., we'll see…

For my part I'm getting along fairly well. It's heavenly to sleep if I want to, I've been out in the pasture every day getting trees off the fence and patching holes or even (gasp!) sitting and looking. A tweety bird plucked hairs from my head for nesting the other day.
I do get distressed if dwelling on Hubby's predicament. His life-long terror of hospitals and nursing homes has become his living nightmare. No escape either. But I may be at the end of my rope regarding keeping him here. The lack of help or respite condition is now reinforced by the Covid outbreak….but then again if he has turned into a turnip maybe he wouldn't require as much supervision. I think I might be a little more humane than a facility but am leaning most towards the opinion that I'd likely be killing myself for little benefit. I might keep him alive longer but this is not the life he wanted. Why bother with an Advance Directive when the medical providers are hell bent on disregarding it? They advocate diddling him to death with procedures on the chance that they can prolong a hellish existence. I often feel that they think I'm a baddie for saying that the terms laid out in the document should be conformed to. Could be my imagination too.

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@burnt2acrisp I’m so sorry all this is happening. It must be so difficult for you especially at this time. Are you OK by yourself on your farm? I found this website which may be helpful. https://www.lbda.org/go/treatment-behavioral-symptoms-when-consider-antipsychotic-medications-lbd
If/when you speak to the doctor, mention the haloperidol and his problem with muscle cramps. Does he have an official diagnosis of Lewy body dementia? Ask if there is a good substitute for haldol that could be used instead. Also, bring up the advance directives. If they are very clear, they should be followed. What does the doctor say? Repeat that he doesn’t want unnecessary tests and procedures. Write everything down! Don’t let yourself get angry or upset; you’d just like to understand. Can you do this?

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@becsbuddy Thanks for that page link. The write up was as good or better than Mayo's which I believe mentioned lbda's site. Found info on a drug that dr. said he is going to try first. Wikipedia.org had tons of info on the drug + pictures of what some of the side effects look like. Hubby does have several of the extra risk factors listed but this was true of the former drugs as well. Only talk w/dr. so far was the obligatory admission call.
As for dr. knowing about the Haldol – he's the one who told me that the symptoms and reactions Hubby experience (cramps/twitching/somnolence ) with it are proof-positive that the ailment is LBD. Not to mention that all his normal symptoms are classic LBD. (a GP doctor we'd been seeing last fall also thought it was LBD by the symptoms)
UCLA Health has an excellent video on youtube titled Dementia with Lewy Bodies – Sarah Kremen, MD.
Kremen, a neurologist at UCLA, discusses how LBD can be distinguished from other dementias by it's unique symptoms. Also methods of brain imaging I hadn't heard of.
I spoke with the hospital director today and she said that dr. saw hubby this morning and that drs. will have their weekly assessment meeting in the morning. Director implied that hubby may be approved for discharge soon. (especially when I told her he doesn't have medicare and was sent to them by a non-V.A. doc!)
Side note: I've been trying to help the V.A. dr arrange a telemedicine appointment with hubby and the hospital crowd actually gave dr. the runaround and dodged the appointment. Kinda surprised that they'd treat a dr. that way…I had discussed the proposal with too many staffers for the dodge to have been accidental.
As for getting mouthy with a doctor I never have. Who knows – maybe frothing at the mouth would improve communication! Just kidding…sort of.
Meek civility has never worked in the past…the doc who put hubby on all the harmful meds last month wouldn't hear of the GP's tentative diagnosis of LBD, my supporting description of symptoms, or the fact that I told him that the psychoactive shot given before hubby was shipped to him from the V.A. had unanticipated effects on hubby. Doc just said that he had never seen the behaviors hubby was exhibiting but they didn't look at all like Parkinsons/Lbd to him!
Little did he know that hubby was in the throes of an adverse reaction to the psychoactives administered shortly before admission. Sure wish he'd have listened up and thought it over. And I'm really struggling with the question – how did he fail to figure it out as hubby deteriorated under the medications given while he was with them?

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@burnt2acrisp

@becsbuddy Thanks for that page link. The write up was as good or better than Mayo's which I believe mentioned lbda's site. Found info on a drug that dr. said he is going to try first. Wikipedia.org had tons of info on the drug + pictures of what some of the side effects look like. Hubby does have several of the extra risk factors listed but this was true of the former drugs as well. Only talk w/dr. so far was the obligatory admission call.
As for dr. knowing about the Haldol – he's the one who told me that the symptoms and reactions Hubby experience (cramps/twitching/somnolence ) with it are proof-positive that the ailment is LBD. Not to mention that all his normal symptoms are classic LBD. (a GP doctor we'd been seeing last fall also thought it was LBD by the symptoms)
UCLA Health has an excellent video on youtube titled Dementia with Lewy Bodies – Sarah Kremen, MD.
Kremen, a neurologist at UCLA, discusses how LBD can be distinguished from other dementias by it's unique symptoms. Also methods of brain imaging I hadn't heard of.
I spoke with the hospital director today and she said that dr. saw hubby this morning and that drs. will have their weekly assessment meeting in the morning. Director implied that hubby may be approved for discharge soon. (especially when I told her he doesn't have medicare and was sent to them by a non-V.A. doc!)
Side note: I've been trying to help the V.A. dr arrange a telemedicine appointment with hubby and the hospital crowd actually gave dr. the runaround and dodged the appointment. Kinda surprised that they'd treat a dr. that way…I had discussed the proposal with too many staffers for the dodge to have been accidental.
As for getting mouthy with a doctor I never have. Who knows – maybe frothing at the mouth would improve communication! Just kidding…sort of.
Meek civility has never worked in the past…the doc who put hubby on all the harmful meds last month wouldn't hear of the GP's tentative diagnosis of LBD, my supporting description of symptoms, or the fact that I told him that the psychoactive shot given before hubby was shipped to him from the V.A. had unanticipated effects on hubby. Doc just said that he had never seen the behaviors hubby was exhibiting but they didn't look at all like Parkinsons/Lbd to him!
Little did he know that hubby was in the throes of an adverse reaction to the psychoactives administered shortly before admission. Sure wish he'd have listened up and thought it over. And I'm really struggling with the question – how did he fail to figure it out as hubby deteriorated under the medications given while he was with them?

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@burnt2acrisp I will certainly watch the video you mentioned. I didn’t mean to accuse you of getting mouthy, just reminding you to play it cool. 😎 I have a bad habit of losing my temper to often. If your husband is discharged, do you think you’ll be able to take him home?

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@becsbuddy, Don't worry – I didn't take your remark about ill-temper that way at all. I'm sure that anyone attempting to converse with most medical professionals would need to curb their frustration from time to time.
I've got an idea for a new entertainment show called "Doctors Say the Darnedest Things." Despite the wonders of modern medicine I don't think Art Linkletter is available to host the show…bummer! Probably wouldn't fly anyway due to too narrow of an audience pool. Only doctors would understand the punch lines and they wouldn't likely find them amusing.
Just got off the phone with hospital. Hubby not calming down well at all. Still attacking staff frequently. I had two questions for them: Will the effects of the former incompatible meds likely be permanent or transient, and could the frequent Haldol shots be contributing to the problems.
She said they've quit the Haldol and gone to something else. Guess that's why I've not gotten more notification calls lately about the Haldol shots. I thought he was doing better.
Regarding any lasting effects from the incompatible meds she doesn't know. Question for Dr., next week.
Discharge not imminent.
As for bringing him home vs. warehousing him somewhere I'm between a rock and a hard spot. I think that if warehoused he will die within a month. If I bring him home I'll die within a month. Only a slight exaggeration…

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@burnt2acrisp

@becsbuddy, Don't worry – I didn't take your remark about ill-temper that way at all. I'm sure that anyone attempting to converse with most medical professionals would need to curb their frustration from time to time.
I've got an idea for a new entertainment show called "Doctors Say the Darnedest Things." Despite the wonders of modern medicine I don't think Art Linkletter is available to host the show…bummer! Probably wouldn't fly anyway due to too narrow of an audience pool. Only doctors would understand the punch lines and they wouldn't likely find them amusing.
Just got off the phone with hospital. Hubby not calming down well at all. Still attacking staff frequently. I had two questions for them: Will the effects of the former incompatible meds likely be permanent or transient, and could the frequent Haldol shots be contributing to the problems.
She said they've quit the Haldol and gone to something else. Guess that's why I've not gotten more notification calls lately about the Haldol shots. I thought he was doing better.
Regarding any lasting effects from the incompatible meds she doesn't know. Question for Dr., next week.
Discharge not imminent.
As for bringing him home vs. warehousing him somewhere I'm between a rock and a hard spot. I think that if warehoused he will die within a month. If I bring him home I'll die within a month. Only a slight exaggeration…

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@burnt2acrisp How have you been doing this week? Does your city/state have the stay at home rules? I hope your husband is getting better and that the staff is staying in touch with you. It’s such a difficult time for everyone now. Here’s a big cyber hug from me! Becky

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@becsbuddy thanks for the encouraging word. It does seem to help me to to 'vent' some!
I'm actually not sure about the stay at home rules here. I don't like to go running around anyway and it's normal for me to not leave home but every couple of weeks. I do understand that lots of people are struggling with the restrictions and I feel for them.
When I called the dementia unit on Tuesday to inquire about Hubby they told me that he had been admitted to hospital the previous day (Monday) as a suspected Covid case. Already confirmed positive by CDC before I learned of it.
Since then his condition has kinda been up and down but thus far not in ICU. He was deathbed dehydrated when they got him but 4 bags of fluids via IV at top speed appear to have improved the dehydration. Not a good start for a Covid patient.
Health dept having difficult time establishing just when he became symptomatic. The dementia unit nurse told me that he seemed 'a little off' on Friday, when she returned to work Monday she found him very ill upon her start of shift assessment. Dunno what they told health dept but whatever they said will go. I haven't seen him since the first so may be in the clear…
I discovered hospital didn't have his Advance Directive, after never mind what runarounds had to make an extra town trip to fax it to them. 24 hours later hospital couldn't locate it….worked the phones all morning today never mind what runarounds, found a Medicaid bureaucrat in Timbuktu who called hospital to make inquiries after which they managed to locate document. Praise God for that woman – I used her like a dirty dishrag. Only later did she learn that he's not even under Medicaid. I hope the ends justify the means. That woman helped me and I shall remember her in my prayers from this day forward.
Hubby appears to be doing pretty well this evening. Fever down some on it's own, he woke up for a while today and tried unsuccessfully to communicate which is better than yesterday. They got him to drink 1/2 a cup of water.
Man proposes, God disposes. I'll find what comfort I can in that.

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@burnt2acrisp There is nothing like a kind soul to give us hope for humanity, bless the worker her went out of her way to help you. I will pray for you and your husband – you have been on a nightmare ride these past months. Be kind to yourself, and keep us informed.
Sue

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@burnt2acrisp

@becsbuddy thanks for the encouraging word. It does seem to help me to to 'vent' some!
I'm actually not sure about the stay at home rules here. I don't like to go running around anyway and it's normal for me to not leave home but every couple of weeks. I do understand that lots of people are struggling with the restrictions and I feel for them.
When I called the dementia unit on Tuesday to inquire about Hubby they told me that he had been admitted to hospital the previous day (Monday) as a suspected Covid case. Already confirmed positive by CDC before I learned of it.
Since then his condition has kinda been up and down but thus far not in ICU. He was deathbed dehydrated when they got him but 4 bags of fluids via IV at top speed appear to have improved the dehydration. Not a good start for a Covid patient.
Health dept having difficult time establishing just when he became symptomatic. The dementia unit nurse told me that he seemed 'a little off' on Friday, when she returned to work Monday she found him very ill upon her start of shift assessment. Dunno what they told health dept but whatever they said will go. I haven't seen him since the first so may be in the clear…
I discovered hospital didn't have his Advance Directive, after never mind what runarounds had to make an extra town trip to fax it to them. 24 hours later hospital couldn't locate it….worked the phones all morning today never mind what runarounds, found a Medicaid bureaucrat in Timbuktu who called hospital to make inquiries after which they managed to locate document. Praise God for that woman – I used her like a dirty dishrag. Only later did she learn that he's not even under Medicaid. I hope the ends justify the means. That woman helped me and I shall remember her in my prayers from this day forward.
Hubby appears to be doing pretty well this evening. Fever down some on it's own, he woke up for a while today and tried unsuccessfully to communicate which is better than yesterday. They got him to drink 1/2 a cup of water.
Man proposes, God disposes. I'll find what comfort I can in that.

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@burnt2acrisp Thank you for responding and I hope you don’t think I’m being pushy. I’ve just been concerned about you. 🤗 Sounds like your husband is slowly improving, what do you think? I’ll continue to hold you in my thoughts and hope you stay well. Becky

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@becsbuddy, No I don't think you're pushy at all! I appreciate anyone with a kind word right now. I don't have a clue as to what's going on. Got a 4:00am call from hospital yesterday, said hubby was sinking fast. Did I wish to depart from Advance Directive? Should they petition administration for a sure to be denied permission for final in-person visit? No departure, don't trouble with the certain to be denied visit request. I probably wouldn't get there in time anyway. Little later staff told me death imminent, since I didn't approve for aggressive but fruitless (fruitless their words not mine) treatment did I have proper facilities to bring him home for end-of life care or should he stay there, or go to a hospice? Or even a nursing home? Settled on stay there with 'comfort care' only, next pick local hospice.
He didn't die in next 5 minutes after all…during mid-morning call I questioned nurses, dr., about just when was he tested and admitted for Covid, possible reasons for dementia unit to conceal this from me. A dr. said he'd order cessation of all psych drugs immediately and lo! Later that day a nurse brought the phone to Hubby's room and he recognized my voice and responded appropriately to my gab.
Today I called to inquire and discovered that the meds were still on his orders and they were in the middle of transferring him to V.A. hospice care 150 miles away. He's now completely out of danger from Covid illness and only in dementia-related death throes. Awful quick Covid recovery for a 73 year old man! Birthday 74 coming in one month from today. Covid positive April 11, deathbed sick from Covid April 16, recovered from Covid April 16.
Phone just rang- hospital calling to say they just shipped him out. Good of them to let me know. When I questioned the chain of events 'Julie" laughed and said none of it was her doing.
This afternoon I had to ask for contact info on destination. Talked to V.A. rep who pretty much told me that I get to choose the funeral home. Period. By the way…V.A. website says they don't accept or abide by Durable Power of Attorney or Advance Directives, but I had heretofore been under the impression that private facilities do.
I'm not making this up tho it reads like a bad horror novel. I'll never see Hubby again and they've put him beyond the reach of investigation. I think the situation warrants investigation but don't know by whom.

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