Caregiver Burnout Warning

Posted by burnt2acrisp @burnt2acrisp, Fri, Mar 6 7:35am

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 sorry you experienced this with the VA near you. I hear there is a great difference in VA facilities. I suggest you contact your congressman and senator. Tell them what you have us. They should be able to help.

I don't know where you live but the VA clinic and staff in Iowa where I live was excellent. When I called with behavioral problems with my husband (who died at 89 a month ago) they referred me to a Senior Behavioral Unit at a local hospital where he stayed for 3 months for evaluation and placement in a care center. That took longer than usual because he was not ambulatory and most of the Memory units here were not able to provide skilled care for him. We finally found a small care center in a small town that had a room and he was there for almost 3 years. Excellent care and wonderful personnel. I am praying for you.

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@burnt2acrisp I am so sorry to hear of all that you and your husband have endured from the health care system that is supposed to assist those who have served our country. Please accept my thanks for all that you have done for him. Placing him in care had to be wrenching, but necessary for his safety and yours, and for your very survival. When you have gotten a few nights of sleep, I hope that you will seek someone to talk to. I am not a professional counselor, but it sounds to me like you are suffering from PTSD after all that you have been through. Please know that we are here to support you as you go forward. Sue

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I understand your frustration and feel your pain. My husband is a Vietnam Veteran with dementia as well. Have you considered using the Mission Act? This will allow you to use civilian doctors, and perhaps get faster and better care. Also find out when the Comprehensive Caregiver Program is going to begin for Vietnam era veterans. I’ve been unable to get that information, but it is supposed to happen soon. I’m not a doctor, but my husband has frontal temporal dementia. This is commonly associated with extremely negative behavior. A MRI scan with contrast can confirm this diagnosis, but a PET Scan would be beneficial as well. We are in the Augusta Georgia area. This was one of the top VA centers, but the bean counters have been running medical staff off at an alarming rate. It is all about numbers and not care. I intend to utilize the Mission Act as much as possible, once I figure out how it works. There is no point in dealing with incompetence when there is an alternative. Finally, the VA Caregiver Coordinator should be able to provide you with a list of facilities that the VA will pay for all care. Make sure you check all of them out before placement. Some are not very good.

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I am so very very sorry you have had to go through such horrendous circumstances. My husband was diagnosed with bvFTD in 2017. It sounds to me like your husband has that same horrible disease which primarily affects their behavior. Please Please do not feel guilty about your choices. I could no longer care for him and against his will I put him in a care facility two years ago. As you I was on the verge of crashing emotionally, mentally, and physically. He has settled quite well the after the initial battle which was horrible again. I certainly understand the consequences of the disease that has caused your burnout having dealt with so much of this also. However I live in Iowa near the University of Iowa which is a top notch facility across the US and have traveled twice to the Mayo Clinic in Rochester Minnesota which for your information is rated the number one neurology department in the US. He was first diagnosed at the UI and twice diagnosed at the Mayo Clinic. At Mayo he received Pet Scans both times. These are excellent tests and absolutely reveal the dementia and the area in which it affects his brain. He also received a neurological psychiatric work up which revealed a great deal of the way his brain works and his inabilities to cope with everyday life per his disease. I have spent hours educating myself and keeping in touch with the medical field so I do not lose my way but I will in by no means let this disease define me nor control me but it has been a long and difficult process getting to that point. My two children support me and for that I am so grateful. I hope you have family/close friends to walk with you. I have found for the most part that no one understands the disease and the way it affects Bill so I shut my ears to those comments. I wish you the best and the strength you need to continue making the decisions you need to make.

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Thank you all for your kindness and advice.
I'm afraid that my post did devolve into a rant against the V.A. The title – and main point – of the post should have been "How To Make Your Loved One Fear And Hate You In Just 50 Complex Steps"
For years I've been trying to overcome my outspoken aversion for the V.A. Always heard that one has to recognize a fault to correct it. Thought I was making a little progress…on a scale of one to ten (ten being the worst) the present horror show is about a negative seven.
I've spoken to hubby's facility doctor once and he said that it would be nice to have some brain imaging before proceeding. I'm all for that and told doctor I had already spoken to a V.A. Community Care coordinator who said to let them know if anything was needed but doctor is proceeding without it.
There was one symptom that doctor seemed a little mystified by. Hubby sometimes suffers a strange muscle lock-up. Seems to be connected to over-exertion. He starts leaning backwards further and further until he loses balance and falls. Twice this went much further and his knees bent also until his whole body was bent into a backwards leaning 'U' shape. So far back that had he fallen he would have landed on the top of his head. During these episodes he can flex his hands (maybe grab a support) that is all. Very hard for me to ease him to a safe spot because muscles are locked tight. The muscles then release in 3 to 4 minutes. The incidence of this phenomena appears to be decreasing though he now usually walks with a more upright posture than he has for years. Does this ring a bell with anyone?
@momkids – I think that you are absolutely right and I should seek better diagnostics. For all anyone knows he might have a brain tumor or something. No one's done so much as an ex-ray.

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@burnt2acrisp

Thank you all for your kindness and advice.
I'm afraid that my post did devolve into a rant against the V.A. The title – and main point – of the post should have been "How To Make Your Loved One Fear And Hate You In Just 50 Complex Steps"
For years I've been trying to overcome my outspoken aversion for the V.A. Always heard that one has to recognize a fault to correct it. Thought I was making a little progress…on a scale of one to ten (ten being the worst) the present horror show is about a negative seven.
I've spoken to hubby's facility doctor once and he said that it would be nice to have some brain imaging before proceeding. I'm all for that and told doctor I had already spoken to a V.A. Community Care coordinator who said to let them know if anything was needed but doctor is proceeding without it.
There was one symptom that doctor seemed a little mystified by. Hubby sometimes suffers a strange muscle lock-up. Seems to be connected to over-exertion. He starts leaning backwards further and further until he loses balance and falls. Twice this went much further and his knees bent also until his whole body was bent into a backwards leaning 'U' shape. So far back that had he fallen he would have landed on the top of his head. During these episodes he can flex his hands (maybe grab a support) that is all. Very hard for me to ease him to a safe spot because muscles are locked tight. The muscles then release in 3 to 4 minutes. The incidence of this phenomena appears to be decreasing though he now usually walks with a more upright posture than he has for years. Does this ring a bell with anyone?
@momkids – I think that you are absolutely right and I should seek better diagnostics. For all anyone knows he might have a brain tumor or something. No one's done so much as an ex-ray.

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I think that you did a fine job of not ranting against the VA too much. My husband is former military but does not use the VA, although his brother is a disabled veteran and he does. We have heard lots of stories about how difficult it is to navigate and get care even for simple things, much less something as complex as your situation. It know it's hard right now, but you are doing the right thing. Hang in there and we are here to support you.

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@burnt2acrisp

Thank you all for your kindness and advice.
I'm afraid that my post did devolve into a rant against the V.A. The title – and main point – of the post should have been "How To Make Your Loved One Fear And Hate You In Just 50 Complex Steps"
For years I've been trying to overcome my outspoken aversion for the V.A. Always heard that one has to recognize a fault to correct it. Thought I was making a little progress…on a scale of one to ten (ten being the worst) the present horror show is about a negative seven.
I've spoken to hubby's facility doctor once and he said that it would be nice to have some brain imaging before proceeding. I'm all for that and told doctor I had already spoken to a V.A. Community Care coordinator who said to let them know if anything was needed but doctor is proceeding without it.
There was one symptom that doctor seemed a little mystified by. Hubby sometimes suffers a strange muscle lock-up. Seems to be connected to over-exertion. He starts leaning backwards further and further until he loses balance and falls. Twice this went much further and his knees bent also until his whole body was bent into a backwards leaning 'U' shape. So far back that had he fallen he would have landed on the top of his head. During these episodes he can flex his hands (maybe grab a support) that is all. Very hard for me to ease him to a safe spot because muscles are locked tight. The muscles then release in 3 to 4 minutes. The incidence of this phenomena appears to be decreasing though he now usually walks with a more upright posture than he has for years. Does this ring a bell with anyone?
@momkids – I think that you are absolutely right and I should seek better diagnostics. For all anyone knows he might have a brain tumor or something. No one's done so much as an ex-ray.

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@burnt2acrisp You are very courageous and have done what really needed to be done. Your strength is to be admired.
About his leaning backward at times: I would suggest you ask for a list of the medications he receives. Some may have a problem like this as a side effect. Or how 2 drugs may interact. It may be worth investigating.
Have you checked to see if the facility has an ombudsman? An ombudsman is someone you can bring a complaint and they investigate. They are usually called after you have tried everything else.
I wish you all the best

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@becsbuddy

@burnt2acrisp You are very courageous and have done what really needed to be done. Your strength is to be admired.
About his leaning backward at times: I would suggest you ask for a list of the medications he receives. Some may have a problem like this as a side effect. Or how 2 drugs may interact. It may be worth investigating.
Have you checked to see if the facility has an ombudsman? An ombudsman is someone you can bring a complaint and they investigate. They are usually called after you have tried everything else.
I wish you all the best

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@becsbuddy, this is what puzzled doctor – hubby has been on NO medications or even supplements for years. 'Cleanest' 73 year old I've seen or heard tell of with excellent kidney function. No food restrictions or medication conflicts to worry about. Labs drawn 5 or more times since August by both V.A. and 'outside' practitioner we were seeing. Frequent labs are a great way both to ascertain how the nutritional program is doing and monitor hydration levels. Hubby at increased risk of dehydration and nutritional deficiencies – he's missing about three feet of his colon due to a bout with Stage IIIa colon cancer ten years ago.
The facility doctors' first thought was drug effects..don't know if they did a tox screen to confirm my statement that he's not on anything. Hope they did.
All doctors he's seen lately have mentioned high blood pressure but no prescription given. Trying to improve this through diet adjustments, it seemed to be working till most recent labs. The facility he's now in have started blood pressure meds., Risperdal, and thyroid meds. They found low thyroid function in latest labs. Seems like a lot to juggle on short acquaintance as any of these could affect mood and behavior.
V.A. wasn't checking thyroid function but outside doc did in August and it was fine. I'm a little concerned about the low thyroid function as it seems inconsistent with his hyperactivity and voracious appetite. But that's why we take them doctoring right? (that's a joke..sort of). He's lost 5 pounds since August.
Protein levels and other indicators of nutrition/hydration have been good till recently. I made a mistake in original post – it was in Dec. that I called dr. about diarrhea. So we've been battling the thins since then. This wasn't resolved till early Feb. No wonder recent labs don't look so good.
I had to reschedule his Dec. V.A. appointment cause a massive house'n'hubby clean-up set us back too much to make it. He was to go in mid-Jan., a re-schedule with the V.A. brings at least a month and a half delay. The clinic has a two day turnaround on lab work, on Jan 13 I took him in for the draw, appointment was for the 15th. As we were walking out the door on the 15th the clinic called to cancel. Dr. out of office today. They didn't send me a copy of labs as they had in past. Appointment rescheduled for mid-March.
For what it's worth dept.-V.A. website says clinic is 39 miles from us. Odometer says 61.3 miles.

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@burnt2acrisp

@becsbuddy, this is what puzzled doctor – hubby has been on NO medications or even supplements for years. 'Cleanest' 73 year old I've seen or heard tell of with excellent kidney function. No food restrictions or medication conflicts to worry about. Labs drawn 5 or more times since August by both V.A. and 'outside' practitioner we were seeing. Frequent labs are a great way both to ascertain how the nutritional program is doing and monitor hydration levels. Hubby at increased risk of dehydration and nutritional deficiencies – he's missing about three feet of his colon due to a bout with Stage IIIa colon cancer ten years ago.
The facility doctors' first thought was drug effects..don't know if they did a tox screen to confirm my statement that he's not on anything. Hope they did.
All doctors he's seen lately have mentioned high blood pressure but no prescription given. Trying to improve this through diet adjustments, it seemed to be working till most recent labs. The facility he's now in have started blood pressure meds., Risperdal, and thyroid meds. They found low thyroid function in latest labs. Seems like a lot to juggle on short acquaintance as any of these could affect mood and behavior.
V.A. wasn't checking thyroid function but outside doc did in August and it was fine. I'm a little concerned about the low thyroid function as it seems inconsistent with his hyperactivity and voracious appetite. But that's why we take them doctoring right? (that's a joke..sort of). He's lost 5 pounds since August.
Protein levels and other indicators of nutrition/hydration have been good till recently. I made a mistake in original post – it was in Dec. that I called dr. about diarrhea. So we've been battling the thins since then. This wasn't resolved till early Feb. No wonder recent labs don't look so good.
I had to reschedule his Dec. V.A. appointment cause a massive house'n'hubby clean-up set us back too much to make it. He was to go in mid-Jan., a re-schedule with the V.A. brings at least a month and a half delay. The clinic has a two day turnaround on lab work, on Jan 13 I took him in for the draw, appointment was for the 15th. As we were walking out the door on the 15th the clinic called to cancel. Dr. out of office today. They didn't send me a copy of labs as they had in past. Appointment rescheduled for mid-March.
For what it's worth dept.-V.A. website says clinic is 39 miles from us. Odometer says 61.3 miles.

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@burnt2acrisp I’m just wondering how you and your husband are doing. I know you have an appointment scheduled for mid March—I just hope it won’t be cancelled. Becky

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@becsbuddy

@burnt2acrisp I’m just wondering how you and your husband are doing. I know you have an appointment scheduled for mid March—I just hope it won’t be cancelled. Becky

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@becsbuddy, I'm afraid things have gone from bad to worse. My own physical and emotional state appear to have improved a little. But there have been aspects of the situation which I truly believe would be unsettling to a sane person.
Without a tiresome and implausible- or should I say 'difficult to credit' – play by play my relations with the facility Hubby is in never improved. They say I can go get him tomorrow. Or so I was told when I called to inquire.
Previously they had said that he could only go to a long-term care facility.
When he left here he was feeding himself. I cut up his food and handed him the plate, after eating he would then return his plate to the kitchen on his own. About half the time he'd even rinse his plate.
They tell me now that they must place food in his hand, guide his hand to mouth to prompt him to eat. Maybe he eats half the meal.

Hubby has an unusual set of physical problems of the kind shared by POW's or concentration camp survivors. These problems stem from difficulties and delays in obtaining correct diagnosis and treatment of a totally obstructed colon. This gruesome state of affairs dragged on for a little over a month. The tumor was large and extended into nearby lymph nodes. Colon below the tumor was gray and shriveled.
Through a tragic failure in communications the facility he's in failed to take into account that Hubby's system just doesn't work like most people's. That's the kindest way that I can put it. Or maybe things would have turned out this way no matter what.

I'll call the place in the morning to see if discharge is still a go. So far they've never told me anything without an unseemly badgering on my part. I put in a call-back request for the doctor the other day and the social worker called. Refused to discuss specifics, just come get him next Monday.

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@burnt2acrisp

@becsbuddy, I'm afraid things have gone from bad to worse. My own physical and emotional state appear to have improved a little. But there have been aspects of the situation which I truly believe would be unsettling to a sane person.
Without a tiresome and implausible- or should I say 'difficult to credit' – play by play my relations with the facility Hubby is in never improved. They say I can go get him tomorrow. Or so I was told when I called to inquire.
Previously they had said that he could only go to a long-term care facility.
When he left here he was feeding himself. I cut up his food and handed him the plate, after eating he would then return his plate to the kitchen on his own. About half the time he'd even rinse his plate.
They tell me now that they must place food in his hand, guide his hand to mouth to prompt him to eat. Maybe he eats half the meal.

Hubby has an unusual set of physical problems of the kind shared by POW's or concentration camp survivors. These problems stem from difficulties and delays in obtaining correct diagnosis and treatment of a totally obstructed colon. This gruesome state of affairs dragged on for a little over a month. The tumor was large and extended into nearby lymph nodes. Colon below the tumor was gray and shriveled.
Through a tragic failure in communications the facility he's in failed to take into account that Hubby's system just doesn't work like most people's. That's the kindest way that I can put it. Or maybe things would have turned out this way no matter what.

I'll call the place in the morning to see if discharge is still a go. So far they've never told me anything without an unseemly badgering on my part. I put in a call-back request for the doctor the other day and the social worker called. Refused to discuss specifics, just come get him next Monday.

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How are you doing @burnt2acrisp . Did you go get your husband? Now is such a terrible time for everyone, maybe he would be better in a long term care facility. It’s tough all around, isn’t it. I’ll keep you in my thoughts

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@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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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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