Jmlarue

Joydean

You were on my mind and hope you are getting some much needed rest. Also hope you have been able to some of medical needs taken care of. Please take care of yourself! Post when you feel up to it. Know many folks on here care about you.

M1

Ditto.  Hope there's been progress.  Let us know when you can.

Jo C.

Gosh, J; I too have been thinking of you and your foray into the VA system - if you need any more Jell-O and nails, just let me know (inside joke); I am so sorry that it is such a morass of muss and fuss to deal with the VA; it is at times such a blockage of monumental proportions that some people just give up - it is good that you have been sticking to it and standing up tall an!d forceful. 

In such situations, I would picture myself in full operatic Wagner Brunhilda costume: Horned helmet, heavy breastplate, long spear and bellowing out my aria - - well; at least it made me grin. Theme music - "Ride of The Valkyries."

If really upset, I would change my repertoire and ramp it up a bit which was so noxious they would do anything to get rid of me:

Example:

 

Ed1937

Jm, it's never easy to get things done when bureaucracy is involved. But we know you're a fighter. Waiting to hear some good news from you.

jmlarue

Finally got a moment to check the forum this morning to see how everyone is doing. It was a lovely surprise to find folks asking about me and my DH. Thanks to all.

DH has been in the VA Psych Unit since Saturday morning - so this is Day 6. I've checked on his condition daily by phone. The nurse reports that he's eating and sleeping well and that he is generally calm. He hasn't lashed out at anyone, but does have periods late in the day where he is anxious, asking to leave, and wanders the halls aimlessly. They also report that his aphasia is a serious roadblock to assess his current abilities/disabilities, but it is abundantly clear to everyone that he will need to be placed in MCF or SNF facility within the VA system if I don't feel safe to take him home. They've confirmed all I've told them about his inability to do basic ADLs without prompting. The unit has 33 beds and only one other PWD in the unit. I have the distinct impression that DH is a teaching experience for a lot of the staff. I find it somewhat amusing that they frequently comment that his mental status is "highly disorganized" - a nice way of saying he doesn't know his butt from a tin whistle.

It sounds like they have been titrating the Seroquel dosage upward every couple of days. I haven't been able to confirm that because I haven't had a single consult with an attending doctor since his admission. I keep pushing for that phone call. Maybe, today. The social worker is proceeding with the plan to have him declared incompetent so he can be held in the psych unit until a bed in one of the LTC facilities becomes available. The hearing is scheduled for Monday, but I'm told that the court often issues a continuance for several weeks down the road because of the extraordinary number of cases on the docket. The imposed isolation of the pandemic has played hell with the mental health status of a lot of folks.

I visited the unit yesterday to bring him some personal clothing. They've been dressing him in scrubs since he's been there. I was able to visit with him for about 20 minutes in the company of staff to monitor his behavior. He's confused, but not agitated, about where he is, how long he's been there, or where I've been. He did ask when he could leave. He wasn't distressed when I said, "You need to stay for a little while longer." From what I observed yesterday, my gut feeling is that he will be able to transition to placement in a facility without drama. It was a relief to see that he expressed no feelings of abandonment and no recollection of his past anger and violent behavior toward me. I was not "the trigger" I thought I was. The wild visual and auditory hallucinations were definitely at fault. If they can continue to control that psychosis with medication, I don't think he'll pose a threat to anyone.

Final thought - like so many of you, I have wrestled with the idea of bringing him home. In his present state, my fear of him has abated. However, on the balance scale of what course of action would be best for both my DH and myself, I've decided to move forward on permanent placement. I've had to accept that I am not capable of giving him the 24/7 care he will need as he continues to decline. It would be an unkindness for both of us to wait for another crisis to force this decision to be made on a short timeline with little control over the process. Other caregivers who've made that decision often say, "You'll know when the time is right." I agree with that.

Joe C.

Jm, I am glad to hear that both you & your husband are getting the assistance/care needed. Placement is a difficult decision but at some point it is the correct one. I hope for the best for both of you.

Jo C.

Hello, J; I am delighted on your behalf to hear that the care has been going well and that you have gained cooperation from the VA staff.  You were wonderful in how you stood firm; clear and concise, and got your husband to the care he needed and then soon on to the setting that can best care for his ongoing needs. 

You have been a wonderful wife, caregiver and advocate for your husband.  The triggers at home were so dangerous and that has been removed.  You will be free to be his loving spouse and not have the 24/7 behavioral issues you have been striving so hard to deal with at the risk of your own health and well-being, and he is much more calm without all those horrible feelings driving him at home.

Let us know how it goes; we think of you and look for you.  And, as for the tin whistle; you gave me a good chuckle . . . and a good chuckle  is always a good thing.

Take good care,

J.

Ed1937

Jm, it sounds like you have a lot of positives going on. I'm glad for you. Keeping fingers crossed that things will keep moving well. I know that placement is hard, regardless of circumstances, so we're always here if you need someone to talk to. Keep us updated on the progress with a facility.

Quilting brings calm

JM-  I’m glad that you don’t appear to be getting any more  roadblocks from medical professionals, and that they agree that he can’t come home.  I think that will go a long way in this hearing process.  It doesn’t sound like any delay in that hearing  will be a roadblock either  

I agree with your final thoughts.  Why put  yourself and him through this again only to have the same outcome?   The next time he takes a roundhouse closed fist swing at you, he might connect.   

Joydean

Jmlarue, so very glad to hear your update date. Very happy to hear your husband is getting the care he needs and deserves. My other question is, how are you doing? Are you getting some rest? Please take care of yourself. Prayers for you and your husband! 

storycrafter

Good news/information you're getting. Thank you for sharing your thinking about it, too. Good thinking!

jmlarue

Thanks for the feedback and concern. I value it. I have a question to pose to the group, particularly those who've been down the Psych commit road for their LO. 

I have been told that once a Court has judged him incompetent, the VA will be able to keep him for up to an additional 120 days (4 months) while waiting for a bed to open up in one of the 4 LTC facilities in our State. Presumably, it won't take that long to stabilize his behavior on the antipsychotics so, in effect, they would be "warehousing" him until permanent placement is available. My concern with that is that these Psych facilities are not necessarily set up to provide the sort of activities and constant hands-on guidance a PWD needs every day. Because there is only one other PWD in that unit now, I imagine that he would find little willingness of the other patients to interact with him, particularly since his speech is largely insensible. I'm concerned the sense of isolation might accelerate his decline to being non-verbal, lonely and further depressed.

If I was convinced that the violent behavior was under control, would the more compassionate choice be to bring him home while waiting for a open bed? I would, of course, want assurances that he has some priority consideration on the wait lists for placement. Bringing him home is not something that the VA should view as absolving them of the duty to provide for his LTC going forward. I don't know that that would happen, but I have no confidence that it wouldn't. There's the rub.

So, here's the question...would you take your LO home on a short-term interim basis, so long as you felt safe to do so? Any thoughts on the pros and cons I should consider in making such a decision? 

P.S. I am getting rested and recharging my batteries. Having difficulty with not over-thinking everything, however.

Jo C.

It is really nice to hear that you are gaining rest; it has been so needed.  Thinking and thinking seems to come with the territory -  I would snap awake in the middle of the night and begin thinking and thinking.

As for taking your husband home . . . that is a hard one.  I think I would quietly go day by day, week by week not taking him home at this time unless it became readily apparent it needed to be done. The VA will want him out of the psych unit; they will advocate for him to transfer . . . if he is home, they have a built-in carer and there is no need to push and can just let things dangle for a longer period of time while they are buried under other work.  As your husband's condition becomes more stable, perhaps you can politely ask staff how they accommodate his need for activity, etc.; that may make the extension of stay better. 

However; if you assess the situation at the psych unit and it is highly negative, then you can make a different decision.   You know; I am wondering how much  advocacy the discharge planning/social work staff puts into obtaining beds and if they advocate problem issue placements of other patients in other departments such as the medical floor units despite numbers on a waiting list.  Is it possible for you to visit a VA LTC facility to see what it is like and how the dynamics work?

Four months sounds like such a long time; if at the end of four months if a bed is not secured at the LTC facility, then must he be taken home I wonder.

This is difficult and I am sorry for the deep concern and things being up in the air; I so hope  that all goes well; you have been doing the best you can under some heavy circumstances;  I hope relief comes soon.

J.

jmlarue

Jo C - Thank you. I value what you have to say. Your experience and ability to bring some cool logic to a lot of us who are overwhelmed by the emotions and uncertainties of dealing with this scourge we call dementia.

You raise some good points that I must consider. My current thinking is that the soft targets at the VA are probably the social workers - the one at our regional VA clinic, as well as the one at the Psych Unit in Seattle. I think I have some rapport with both. The hard targets are the Psychiatrists. Experience has taught me that if they feel challenged in any way, they simply  stonewall the situation. In general, I have a fairly good idea where to fight my battles with the VA. The admissions coordinators at the 4 facilities might also be softer targets, if I can convince them that my DH will not be the problem patient with behavioral issues they are likely to reject out of hand. It would help, too, if I can leave the impression that I'm not likely to be the meddlesome family member who would visit often and always have a complaint about my LO's care. It's not a bald-faced lie. Let's just call it a little fiblet, shall we?

Hoping others here will weigh in. I definitely need help with my over-thinking and the patience to let this situation evolve a little bit. DH has only been in Psych for a week. As you rightly point out, the Psych Unit may well want to move him out and advocate for quick placement. Maybe the smart money is to sit on my hands, wait and watch another week or so. 

Ed1937

Jm, I have absolutely no experience with what you are dealing with. You mentioned that there are four LTC facilities in your state. I'm assuming these are VA run, is that correct? If so, if I were in your shoes, I'd leave him where he is for a while to be safe, and keep from moving him to different environments.. If you think it is necessary for him to get out of that environment, maybe you could get him in a private LTC facility until one run by the VA has an open bed. Just a thought. It's just too easy to overthink things when you are in the position you are in.

Joydean

Jm I agree with what JoC said. You and I and others that have to work with the VA know “out of sight is out of mind “ for them. We also know their famous line of “ this department or that department “ lost the paperwork, or misplaced it! They love the blame game because they think we will just go away. You know all that you have had to go through with them so far. I can’t tell you what to do or even advice, just to remind you of what you have had to do. 

I also think what you have said is the right thing. You know the best advocate already and that’s your main one to keep as a friend! 

I’m glad you are getting a little rest and recharging your batteries , but please don’t just jump back in. Take your time. For now your DH is safe and cared for. You said they are adjusting his meds every other day, so they are watching. You may not be the trigger, but home may be. Just thinking of ideas. Take care. 

M1

JM, I can tell you from experience that the doctors are going to have little to do with the placement decisions or priorities.  They are going to leave that to the SW's and admin. So I think you are correct generally to ignore the psychiatrists and target your energies elsewhere.  Very difficult to move these systems.

The hard truth:  He's probably going to decline regardless, and I doubt that staying on the psych ward will be harmful.  I think you risk losing your place in the system altogether if you take him home, unfortunately.

I empathize completely with how you're feeling.

Jo C.

Hello again jm; though I have mentioned it before, I do not know whether or not if you saw it.  My professional background as an RN, is that I was Administrator of Patient Care Management in various acute med centers.  One of these had a GeroPsych Unit.

I tried to respond to you above with one foot in each camp of thought.  However; if this were me, I would not take him home nor would I transfer him to another Long Term Care facility.   Once you do, you lose traction for his transfer to a VA LTC facility.  They no longer would have motivation to actively get him placed.  We have had Members here who ran into such issues and  were never able to get their LO transferred into a VA LTC setting.   One can easily go to the bottom of the needs thinking in such a situation.

I have also worked as a Consultant and been recruited to "fix" different troubled departments within med centers - many of them Discharge Planning, Social Services, Case Management and Utilization Management amongst other departments; at least one of these departments would be the one that would be affecting the dynamics for your DHs transfer, you will have been assigned to one, and perhaps even to one specific professional staff member which would be what happens in a non-VA med center.

It is absolutely true that many of these staff professionals do a good professional job of it and are good at doing follow-up and advocacy, but they are most often hind end over tea kettle so to speak with far too many patients to easily manage; staffing is a problem in most med centers.  Then there are some others of these professional positions who pretty much are, "retired on the job," and who do not put effort in doing their jobs as intended and take the course of least resistance which is not to do much of anything and let things lie as they are without follow-up or advocacy.   An eight hour a day job for the staff - but quality of life into the future for the patient and family.  Best for family to monitor.

As for bed hold list; well, one may be on  a list - however; so many different departments:  Psych, Medical Unit, Surgical Unit, Neuro/Stroke, Cardiac, and on and on . . . . each one vying to try and move patients into VA owned Long Term Care for discharge who need such a setting.  The answer to this is for the family member to continue too speak with their assigned Social Worker or Case Manager or the Manager of such discharge managment departments in a positive manner, and to continue to follow and let them know you are working as part of the team and are closely following the ability to get your LO transferred. Squeaky wheel and all of that. 
 

The physicians overall have not much to do with this process; they expect the professionals to manage it - EXCEPT - if there is actual misbehavior or non-action by staff that is affecting their patient and the family informs the physician, I have actually seen physicians take the hospital discharge planning staff to task and get matters corrected. However; that is not the usual way things work.

NOTE:  You are correct regarding the "other end" of said transfer - the Intake/Admitting Staff of the desired LTC facility   It is well known by those who work in the acute med centers with managing discharges, that the LTC facility staff does form relationships with some hospital staff in the discharge management departments as well as having agreements with certain facilities.  Often enough, the LTC facility intake staff will accommodate the placement being made from a person they have a friendly relationship with ahead of someone on their waiting list.  I have seen this happen.  Even when I had a personal LO needing a LTC bed, I made the LTC facility intake contacts new "friends."

This relationship preference was such an impediment, that when staff of my department responsibility had individuals needing placement in a short time, the plan of action was to make a placement call very first thing in the morning before most other places had got themselves together.  Often, a LTC patient would have passed away late the preceding day or during the night; or there was a sudden unexpected plan to discharge a patient  or to transfer to another facililty; those are the beds one would want to swiftly gain access to and it had to be done early to be successful.  We knew what time admission staff came in at each LTC facility and coordinated calls thusly.

You have a nice way about you; polite, well-spoken, clear, firm in an appropriate manner, etc.  I used to light heartedly say that I made the Social Workers, Discharge Managment and NH staff my new best friends when I had a LO that I was trying to get transferred.  Relationships even if new and temporary sets the scene for such people actually wanting to help us.  Some are wonderful and so helpful and knowing us a bit reinforces positive dynamics that gets things done.

You are a savvy person of logic; you pretty much have picked up on all of this.  I am guessing that you will continue to stay visible in a positive way, that is very good for success.   I wonder; in the community med centers, patient's families could make contact with the  LTC facility admissions staff - wonder if one can do that with the VA facilities asking about their bed availability and letting them know you are working with the VA discharge management staff to effect transfer.   Nice to make a lovely, polite contact and re-contact if that would be appropriate; however, being the VA owns the facilities, there may be a difference. If considered inappropriate, that could backfire.

You can do a bit of sleuthing to find out how things work with the VA.   Getting it all together and accomplished is a bit like being a butterfly with hiccups; so if it is overdoing things for you, one can just let things take their course.

When trying to get one of my LOs placed when beds were on a waiting list, I felt as though I was simultaneously tap dancing while juggling watermelons and whistling, "The Flight of The Bumblebee."  No rest until accomplished which often enough was not easy, but success did come to be.

Hopefully, this will all go smoothly and turn out just right for you and your husband. Please continue to keep in contact; we are truly thinking about and hoping for the best for you.  It is okay for you to be thinking - that is how we dredge up those little things we need to pay attention to and find the questions we need to ask.  If we don't think, we become static and we miss far too much which can affect outcomes.   As mentioned, you are doing a wonderful job of managing all of this.

J.

jmlarue

M1 and Jo C. - thanks for all the good info. Invaluable information from folks who've had boots on the ground in the medical field is so, so helpful.

Today, I am wrestling with the VA Psych Unit that is pursuing a judicial order for involuntary commitment for my DH. As I now understand it, this would quite literally make my DPOA for making life, death, and all manner of health care decisions for my husband a moot point. Such an order puts all such decisions in the hands of the VA for an indeterminate amount of time into the future. Contesting or modifying any such order after the fact would probably require hiring a civil right's attorney (at some exorbitant fee) to handle the legal battle. I fear I am walking into a bear-trap and will be left powerless to guide or advocate for my husband's care going forward. I can't abide that.

Consequently, I'm like a cat covering you-know-what on a tin roof trying to find a way to stop the whole process in it's tracks. It may require that I demand my DH's discharge home prior to the Court hearing that is scheduled for Monday morning. If so, I will find a way to cope with that. I can't, in all good conscience, abandon my DH to mere existence in a psych facility long term. I don't think I'd ever get over the regrets and feelings of guilt for allowing that to happen to him. Such are the hazards of dealing with dispassionate, big government entities having complete control over defenseless stray dogs and people with dementia.

Please pardon my cynicism but, I should have remembered #3 of the three greatest lies ever uttered..."I'm from the government and I'm here to help you."

P.S. See my avatar photo for a summary of how I'm feeling right now.

Ed1937

Jm, that's just hard to imagine. I'm so, so sorry. That puts you between a rock and a hard place. My only hope is that you are wrong about that.

Jo C.

Wait - something is very, very wrong here. I am so deeply sorry for what is happening and it makes no sense.  We have had Members whose LO went into VA LTC and who had been treated for dementia, but did not have to have their LO go through those legal incompetency declaration hoops.

Something is not right. Anyone going into LTC that has advanced dementia is going in without their "voluntary" approval.  In the community, a DPOA  kicks in when  for a person with dementia a doctor certifies the paerson can no longer format their own plan of care.  Sometimes a Trust will request two MDs to certify. 

Has the professional staff got this all wrong?  Are they placing him in category as a psychotic psychiatric patient rather than a patient with dementia who simply needed his dementia medication adjusted?   Because he was admitted to psych as an involuntary admit for his temporary being a danger to self or others, someone may have screwed this up - he is not psychotic and his meds are adjusted which have quelled his dementia induced delusions.

This sounds so off.  I would try to get to the bottom of this asap as in yesterday . . . if this is actually weirdly true, I agree with your course of action.

This is something you did not need to find yourself facing; I so hope this can be corrected. 

J..

jmlarue

Ed - Sad to report that my understanding of the peril is accurate. I've reached out to the Social Worker at the local VA clinic where DH receives his primary care. I also talked with the Veteran's Service Officer at the Disabled American Vets organization, who guides us through all the hoops on his VA benefits as a 100% disabled Vet. Lastly, I spoke with a paralegal with the King County Superior Court, with whom I lodged a complaint. Specifically, that the Crisis Responders and the VA representatives seeking the Involuntary Commitment order did not provide full disclosure about my DH and me both losing autonomy over his medical care decisions going forward.

It's a cautionary tale. File it under, "Be careful what you wish for" and ask, "What is your legal authority for rendering my LO's DPOA invalid." Shocking.

jfkoc

I agree...something is not right.

Jo C.

I just used Google to try and see if this was a requirement for a person entering a VA NH when dementia is involved, I could find nothing stating this needed to be done, even when I went to VA govt. sites; so that appears not to be the reason for the legal meeting.   Then a thought hit me:

NOTE:  The laws, both state and federal are severely strict about keeping a patient "involuntarily" in a psych setting and law requires not only the medical team to certify a re-certification for continued stay is medically necessary and to do it at timed intervals; it also requires court assessment and documented input to represent the patient's interests and to ensure everything is legal. Often a court representative and not a judge is sent to such re-certication meetings; this was so at my LOs re-cert staff meetings.  We had two of them while my LO was still in GeroPsych and I attended both; my rights as the DPOA were still in force.

In our state, a person can be admitted to a psych facility as an "involuntary" admission for 72 hours. After that, the entire psych care team with doctor, nursing and a court representative meet to extend the stay as medically necessary. This is done at intervals to be able to keep a patient for medically necessary psych care so as to protect patients from unnecessary committment.  Since a person with dementia is unable to state they are wishing to have a voluntary extension of stay, the committee and legal approach is used to protect the patient and meet the legal mandates.

Could this be what is happening?   You have a DPOA; he is no longer competent to format his own plan of care or conduct his business by the fact of Alzheimer's Dementia; he cannot legally state he wishes to extend his stay voluntarily.   The plan was to have your husband certified for four months of stay in the VA psych setting due to the fact it takes an average of two to four months to gain a VA LTC bed.  (Saw that time factor on a VA site.)

Anything else is completely off the rails.

Nothing in any of this should affect your rights as his DPOA and as his spouse.  That should continue to be in good stead.

It would relieve your mind or to take action if this were to be clarified asap and here you are up against the weekend.  How I wish there were a way we could be of assistance, we shall await your next Post.  It would be good if all this was for was to be able to extend his stay at the psych unit because he is not able to provide voluntary committment statement for himself.  We will await your next Post and will be looking for  you.

J.

jmlarue

Jo C - Here's a link to a decent summary of the NEW LAW in Washington State regarding involuntary commitment.    https://www.wsha.org/articles/changes-to-washingtons-involuntary-treatment-laws-that-impact-hospitals/

On it's face it appears to have good intentions about preserving the rights of the patient to contest involuntary commitment or propose some less restrictive way to provide access to mental health care. The sticking point is that it fails to address those individuals (like our PWD) who have lost the ability to speak for themselves and have given a DPOA to someone else to speak for them. The law adds a new wrinkle that I'll bet money no dementia caregiver is aware of. The new law calls for a Mental Health Advance Directive (MHAD) be filed with their medical record. Take note:

"these documents are important tools for advance care planning, self-determination, and crisis de-escalation. They may allow a person to avoid more prescriptive treatment, such as involuntary treatment, at an inpatient treatment setting or otherwise. WSHA encourages all hospitals that provide behavioral health services, whether in a specialized unit or not, to ensure staff are equipped to respond to a request about a MHAD. "

The problem remains, there is no option for honoring a patient's DPOA for Health Care if/when an involuntary commitment is ordered by a Court. Also note: The effective date of this new law was July 25, 2021. They've had two full years to adjust the procedure and become intimately familiar with it's application. Regrettably, it appears to me that this law was written with little consideration for the person with Dementia and the duty of primary family and caregivers to advocate for and direct that person's health care decisions,

Jo C.

Sadly just saw your Post re involuntary committment by the VA. I am sincerely deeply sorry.  Looks like it would be worth taking him home and if he ever needs a GeroPsych admission again, to get it in a community med center rather than the VA.  Can still apply for a VA LTC facility, but at least you would not lose your rights.

Just be sure to play this again one more time with the staff to ensure that this is not just regarding the re-certification and that the playout is not as dire as it sounds.
 

 Idea:  Why not call a regular hospital med center that has a GeroPsych Unit outside the VA and ask them what the issues are regarding extending a psych stay re-certification and see how the legalities play out with them. Perhaps their Unit RN Supervisor or the Psychiatric Social Worker could be of assistance.

 This still boggles my mind and something continues to feel very off.  Would transferring him out of psych to another unit, such as a med unit remove this as a problem?   Just throwing everything I can think of at the wall and hope something sticks. 

 J.

jmlarue

I just don't have the will to fight this battle or the finances to hire a civil rights attorney to do it for us. I've told the Psych powers-that-be to have my DH ready for discharge on Monday. I've set up a phone consult with his established geri-psych doctor for Wednesday at 9:00 am. She's a particularly compassionate individual who initially prescribed the Quetiapine (Seroquel) to treat his hallucinations and aggressive behavior. We just didn't get that dosage titrated up quickly enough to avoid the lashing out behavior. I feel better about her being in charge of treatment.

I ended up getting is a 10-day respite, so the whole thing wasn't a total loss. I'm just glad I was able to stop the legal procedure. I couldn't see any good coming from that.

I'm going to go have an adult beverage now and try not to think about it anymore. 

Jo C.

Okay; got it. 

Enjoy the adult beverage and perhaps two.  You have everything lined up with the doctor for continuity of care; well done.

J.

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Ed1937

Wow! I can't believe this is so hard. It just doesn't sound right. I'm really sorry it is so darn hard. You have to be completely worn out from all this.

Pat6177

Do state laws apply to the VA, a federal agency? I have no idea, just wondering. Jmlarue, this is such a confusing and distressing situation. I pray that you get some clarity about it this weekend.