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Mon, Jun 29 12:20pm · Caregiver Burnout Warning in Caregivers: Dementia

@becsbuddy, I guess I'm mostly not too bad. After a ridiculous struggle I was able to obtain just enough hospital records to wreck my peace of mind. What happened to my husband was so much worse than anything I imagined. I think this website is mostly intended to comfort the users rather than to instill terror of hospitals. But I also believe that dementia patients are at a greatly amplified risk of mistreatment….
Long story short – in the initial intake interview with me the doctor only agreed with my presumption of Lewy Body dementia to get me out of his ear. He missed Hubby's odd behavior as being adverse reaction to continuation of deadly psych drugs. They burned him with haldol shots three times in a little over 24 hours on top of other drugs. He spent at least 3 or more days and nights bedridden screaming in pain about his legs being on fire. His belly bloated enough to impede breathing – heart rate, blood pressure and temperature soared, don't know how long this went on. Maybe 5 or 6 days. Finally a nurse called a code event…right side weakness, unresponsive.
A brain ct scan discounted a stroke but did find brain swelling that accounted for right-side weakness. Someone in E.R. paid attention to abdominal swelling, pain, ordered x-ray, found rectal thermometer out of reach up back passage. The gut had blown out, sepsis well underway.
Hospital appears to have opted for concealment, using Covid to account for the shortness of breath and fever. I was told I couldn't come and get him due to Covid. I still don't know if he had Covid at that point or not…discrepancies in dates/events in the scant heavily redacted records provided throw the issue in doubt. State Health Dept. already under investigation for misuse of Covid funds and the FBI has been tasked with ferreting out Covid fraud involving fake medical supplies. But not something like this. Since Hubby not on Medicaid investigation not their job either. State Health Dept. is in charge of hospital safety but prerequisite hurdles preclude that option.
I'm not interested in lawsuits. Had I been the one to delay seeking medical attention for symptoms I'd be in jail from now on.

A major point that only I seem to be considering: whoever lost the thermometer surely realized that it had gone missing…and said nothing. As Hubby suffered and sickened this person said nothing. What if a demented sadistic serial killer is on staff..and still there? Dementia patients would present golden opportunity for such one. After all "they holler a lot."
A state agency has agreed to investigate the incident as a possible neglect case but the assigned investigator can't conceal his resentment at being tasked with what he considers someone else's job. Just whose job it would be is an open question…I don't look for much from this bunch.

For What it's Worth Department: I commissioned an autopsy at my own expense to settle the Lewy Body Dementia question for keeps. I asked for 'head only' examination. Had I known about the thermometer would have got full autopsy. I was right about the Lewy Body Dementia but so what? Now that Hubby is dead doctors aren't interested.

Sun, Jun 14 5:14pm · Caregiver Burnout Warning in Caregivers: Dementia

@becsbuddy, he died evening of May 2.

Sat, May 2 4:49pm · Caregiver Burnout Warning in Caregivers: Dementia

@becsbuddy, Where to begin? I thought I was burnt 2 a crisp back in February….how to describe what happens when later…and later…not only are the toasting flames left on – they're turned up.
As of this writing Hubby still alive but can't be much longer. It's taking him a hideous time to die.
The VA decided that they're duty-bound to obey my husband's Advance Directive…sort of.
Except for the part where I get to ask questions. And the part defining the circumstances under which artificial life sustaining measures should be abstained from. (maybe)
Directive states that artificial means shall not be utilized to sustain life 'if my dr. and two others agree that I will die (anyway) in the next six months '
VA decided that hubby is toast no matter what…based on undisclosed criteria. Who is his dr.? Who are the two concurring dr.s? Based on what medical evidence was this conclusion reached?
If they know something I don't I wish they'd fill me in.
It's remarkable that a man two weeks short of his 74th birthday is still clinging to life after over two weeks of zero medications of any kind, no IV fluids/nutrition and little to no oral intake of fluids/nutrition. Until yesterday his blood gases were excellent on room air only, vital signs very good and steady. This implies that despite all assertions to the contrary he wasn't deathbed ill upon admission. So much for my former pride in his excellent physical condition which appears to be acting to his detriment now.
He's getting a steady supply of morphine for pain and atavin(?) for anxiety. Explanations of what is causing pain have evolved as things wear on. From 'we don't know' to the more recent and sensible description of what happens to the body in prolonged inactivity and organs begin shutting down. I suspect that the morphine also guards against oral intake as one can't feed or water a semi-conscious person. The anxiety med is easy enough to account for. Also he kept trying to get out of bed at least the first week. Likely made it a time or two. Lacking any info on the original source of pain leaves my imagination free to form it's own theories. Not being a neurologist I'll leave that speculation out.
It's a the undisclosed information that has been eating me up. As if hubby has been the prize in a shell game throughout this drama.
Providers moving him from place to place sans notification to me, end of life decisions made without consulting or informing me. One person says 'legs twitching', another interprets this movement as 'near miss – almost got out of bed again.' The nurse most in charge of his care paints the blackest picture…as the days pass into weeks I descend into an unhealthy speculation regarding what this may mean.
Concealment of the initial Covid test/results and subsequent refusal to supply proof that this occurred may have been the worst. I talked a VA rep into asking the first facility for actual copy of test return and they wouldn't do that either.
Also problematic is the making of ridiculous statements doubtless intended to comfort me. 'Don't worry. Someone is sitting with him all the time.' Come on! In a Covid Unit? I find such comfort to be offensive as hell. I want to talk mechanics, they respond with smarmy 'If only you could be with him' gab. If they're really concerned about my emotional well-being they need to cut out the cloak'n'dagger b.s.
The 4:00am 'death is near!' call that has been repeated six times since the 16th. Most recently yesterday morning. This time the call made sense for the first time: respiration labored, heart rate accelerated.
For 37 years hubby tried to make me promise to shoot him before allowing him to land in a nursing home or Worst of Worst – a protracted stay in a hospital death bed. Perhaps this Covid epidemic provides the sole lawful way out for him. But what a way to go-pity it's dragging out like this.
His last words to me were 'get me out of here!' when nurse held phone near him on the 19th.

I have calmed down quite a bit. For a while I was experiencing what must have been anxiety attacks. I wouldn't know as my usual excitability/personality characteristics have always been so slow as to be nearly in reverse. I think I'll settle down more once hubby is settled.

Fri, Apr 17 7:35pm · Caregiver Burnout Warning in Caregivers: Dementia

@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.

Wed, Apr 15 11:27pm · Caregiver Burnout Warning in Caregivers: Dementia

@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.

Fri, Apr 10 12:48pm · Caregiver Burnout Warning in Caregivers: Dementia

@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…

Thu, Apr 9 11:27pm · Caregiver Burnout Warning in Caregivers: Dementia

@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?

Wed, Apr 8 9:46pm · Caregiver Burnout Warning in Caregivers: Dementia

@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.