6 Weeks in VA Psych Unit - No Progress

jmlarue

I am beyond frustrated and more than a little angry. DH has been in the Psych unit of the VA hospital for 6 weeks without any significant improvement in his anger, agitation, and lashing out. The first 4 weeks, they merely continued to give the same dosage of Quetiapine (Seroquel) that I had given him at home for almost a month prior. The reason I sought his admission to the hospital Psych unit was because the medication didn't seem to be bringing relief to him or me. He was still acting out every evening and I was regularly at risk of injury. After I challenged them that they didn't seem to be making any progress in a month, they spent 4 days withdrawing the Seroquel and changed to using Haldol am/pm starting last Tuesday. I've called for updates on his condition three times in 6 days, every single time, there's no indication that the Haldol is making any difference, either. Latest report was that last night he head-butted his nurse when he had attempted to redirect DH from entering another patient's room. Moreover, DH hasn't had a shower in over a week because he fights any attempts to give personal hygiene care. I don't know what it's going to take for those Psych doctors to understand that I didn't admit him just to see him warehoused indefinitely. I keep filling out applications for placement through his Social Worker. That's a pointless exercise. There isn't a care facility on Earth who will admit him with these behavioral problems.

Joydean

Jm, I’m so sorry. I know you are angry and frustrated. I know that’s saying it mildly. You have every right to be mad. I honestly doubt you’ve even heard from any of the politicians you wrote to. This is just my opinion, but maybe it’s time to start talking to different news stations. Please don’t take this the wrong way because I don’t care who’s democrat or republicans, but any and all news outlets should be contacted. There has to be one that will air your story. I have seen stories on Fox. But like I stated this suggestion has nothing to do with anyones political choice. Prayers for you and your husband!

jmlarue

I know this strikes very close to home for you, since your DH is also a Vet. Mistreating our Vets should be a hanging offense. I have a call in to the head Doc on the unit, now. Will see if he has anything of value to say...if/when I get a call back.

toolbeltexpert

Jmlarue you might remember my plight with my dw, after 2 weeks they were telling me she will be ready shortly to leave, then my dw blood platelets plummeted from 217 to 64. If she had come home she most likely would have died. She went 6 weeks but she did get straightened out med wise. I find it unbelievable they haven't made headway, that is incredibly frustrating. I have no advice other than this has to be so hard. I will be praying for a improvement soon. 

Stewart

toolbeltexpert

Jmlarue I just read your last post, I too went days with out any answers from my dw's MD, I finally went there after 5 days and he sat down with me, but that really made my blood boil. I ended up going before the 6th week was up to the director of the hospital, who unbelievably told me he was gonna get our issues settled and would keep me in the loop and said he would call me that day, he never called back that day or the next which was friday,, he took a week of personal time and left me hanging. I hope you get better results than I did. I do know your pain.

Ed1937

Joydean wrote:

I don’t care who’s democrat or republicans, but any and all news outlets should be contacted. 

I fully agree with that. It's past time that we hold our elected officials responsible. But unfortunately that's probably not going to happen.

Jill, I'm sorry he isn't getting the help he deserves. That's just mind boggling.

M1

JM, any chance you can speak directly to the doc treating him? I would rattle their cages till the cows come home. No excuses here, but staffing shortages on all levels contribute to this.  The hospital where my partner was admitted in March -supposedly the best in the city-wanted to do her intake history and physical over Zoom in the ER hallway. I should have known from that what i was in for. I laughed, it was so absurd. I have a great pic of my partner flipping me a bird in her hospital gown, I'll see if it will post.

just read your response, i would call every single day including weekends, and before/when you get through, schedule the next conversation

Soul Mate

How frustrating!  So sorry.  Can't imagine how you are feeling.

Sometimes I feel like we've all been caught in the twilight zone.  Other times I am sure that I died and went to hell.

Wish that there were a way I could wave a magic wand and it would all be gone.

jmlarue

I don't know what I'd do without the moral support you all provide. Seems like all I can do is come here to vent. You are the only people who can relate to the utter frustration of trying to secure the best possible care for our LOs and constantly running into roadblocks from know-nothings. They all have the book-learning, but no real world experience dealing with the dying brain of a PWD. I'll never understand why it is the so-called dementia experts just continue to throw crap on the wall and hope that something sticks. And, why is it these doctors are all so damned reluctant to concede failure and drag their feet switching gears to try something else? They invariably discount the caregiver's assessment that a drug therapy isn't working - like none of us who spend every moment of every day with this insanity wouldn't have a clue what their LO's baseline is. I am this close --> <-- to asking Crushed if I can borrow his photo of the chicken manure shed to send to all of them. That's how highly I regard their expertise.

dayn2nite2

I know you're working with a social worker, but I may have missed this info - have you contacted the Patient Advocate at that VA hospital?

Just Bill

Lately dementia is in the news. I agree with getting the local news involved. A vet with dementia being ignored by the VA. I think a reporter would love to tackle that.

Jo C.

Horrible situation and I am so very sorry; how awful to feel so completely impotent to be able to effect much needed change in the care approach. How much assistance would a CELA be I wonder, since it is a government hospital; probably not much - just thinking out loud.

I am going to put my neck out based on personal experience for our local area VA Hospital experience which was not a very good one at the particular time in my professional life.  It may well have changed, so this is based on my experience at a particular time for a single center.

First; not all VA hospitals, nor are all VA departments, nor are all VA MDs of the same good quality.  Just like any other outside healthcare entities, there is a full range of competency, adequacy, professionalism, caring, etc.  How things are running often comes from the top down.  That has been my long term professional experience.  Also, in our area, the wait for a VA NH bed took and still takes until the twelfth of never.  I mean almost seems never. That is not at all unusual, and you may not be able to gain a LTC bed and may have to resort to a community setting which of course has financial impact, but SO many have been caught in that dilemma with inadequate numbers of beds to accommodate the many, many, myriad number of needfuls as well as there being significant staffing problems just about everywhere right now.  There are probably many on the NH waiting lists longer than your husband, and if and when a bed comes open, they will get first option.

As Administrator of Patient Care Management, I worked with many families who were striving to get their LO cared for at the VA hospital in our area, it was not easy and much fell through the cracks; people ended up in our ER.  Quality was in many cases at that time, was also an issue.  We sometimes had patients whose LOs had given up on the VA for care needs and went into the private sector using other insurance in order to get timely and much needed care. Yet; there are VA facilities that are absolutely exemplary; one is definitely not the same as the other in over all approach and delivery of care, nor in care in various departments.  I am often perplexed in how many patients or families will continue to bang their heads against walls when trying to get timely, adequate medical care at some facilities and not getting it for an extended period of time, I wonder about why when they could use Medicare, etc. to obtain what is needed so much more readily outside the VA.   I would imagine the reason most often will be financial and sometimes availability of care in more rural areas.

Have you found the psychiatric docs competent?   Have you by the way, used the names of those on your husband's case and looked them up online to see where and when they were educated and their experience?  Something seems askew and obviously cannot continue the same and expect a different outcome. Sometimes the VA Patient Advocate can be helpful; other times not so much.  Have you tried to see an advocate or to do this:  Make an appointment with the primary Psychiatrist managing your husband's care, sitting down with him/her in meeting, discussing the case, the treatment AND the plan for adjusting the treatment if there is one and if not, why not.  If there is a plan, then after the in-person meeting, I would write a letter of confirmation about what the plan is as told to you point by point, and send it to the same psychiatrist keeping a copy for yourself and asking for clarification if the letter is not accurate.   Just calling will not do the trick it seems; perhaps one on one personal meeting will be a more effective approach.

As for the expectations re that NH bed; since this is a HUGE problem in pretty much all the VA settings, it is unlikely that you will be able to gain a bed in a timely manner when it is needed, AND they, like all NHs, are not going to take a patient with the level of behavioral issues your LO has.

You are finding you cannot make all the changes needed through force of personality alone, you will have to go through some serious regrouping to get to where things need to be. I can remember actually calling the Medical Center Director, the CEO of the VA hospital to finally gain what was medically necessary for a patient and it did indeed open doors.

You can choose to contact the CEO of the Med Center, OR  you can also contact the office of the Medical Director who would be the Chief Medical Officer over all the MDs at the facility . . or try the news programs approach which is certainly a horse of a different color or the ultimate choice - leaving the VA system altogether.  For myself, I would probably try the Chief Medical Officer first, but that is my comfort zone.

So . . . got to change the approach as more of the same has gleaned the same. I send best, best of wishes to you and so wish we could be of more help, but here we are on the outside trying to come up with ideas because we do care and we feel awful for what you and your DH are experiencing.

************************************************************************

P.S. For those who are a bit upset at my input, there are wonderful very high quality, outstanding VA Med Centers and wonderful VA physicians, do not get me wrong; I am very aware of that.  One is not the same as the other and this situation seems an outlier.

J.

jmlarue

Day2Nite - Yes, indeed. Left a voicemail (which is used as a call screener everywhere in the VA) 10 days ago. Second message left 3 days later. I don't think they intend to call me back. What do you think? 

FYI - The Seattle VA hospital is HUGE. It's a virtual rat maze of corridors where it's common to see lost visitors asking for directions from each other and intercepting power-walking staff. There is a single elevator that is operational in every bank of four. As we walk those corridors, office doors for social workers, patient advocates, Veteran Service Officers, administration, and other critical support personnel are all closed and locked. Don't bother trying to gain entry without an appointment. The vast majority of calls are channeled through a main call center and it's not unusual for callers waiting a hour or more to be answered and transferred to a voicemail system. Trying to get a direct phone number for essential personnel is like pulling eye teeth. Playing telephone tag over many days is common. If you're waiting for a return phone call, you dare not lay your phone down at any time for several days to avoid a missed call. There is nothing to do with interacting with this huge bureaucracy that isn't stress-filled and infinitely frustrating. The more cynical among us believe this is all intentionally crafted to deflect and deter Veteran contact asking for services. I was able to get a direct phone number for the Psych Unit, but only after a particularly contentious conversation with one of the Social Workers I'd played phone tag with over several days. Anyone who has experience with military service understands the acronym FUBAR. This is the Veteran's Health Care System in a nutshell.

CatsWithHandsAreTrouble

Jmlarue, I'm so sorry you're having such annoying and frustrating time trying to get help for your husband. I think about you lots. I can't offer anything more than that sadly, that and virtual hugs. (((Hugs))) I hope you can make some headway soon!

Gig Harbor

JM not sure what site I read this on yesterday but a wife said hospice gave her a cream for her husband that helped a lot with his agitation. It is called AHD for Ativan, haldol and Benadryl. Would the VA be willing to compound this for him to try?

jmlarue

Interesting concoction. Still waiting for a call back from the head doc at Psych. I will definitely be asking some hard questions. No doubt, that's the reason I haven't had that call yet.

ImMaggieMae

jmlarue, it’s horrible that they are doing so little to get him stabilized. I’m sorry you are having to go through this.You mentioned that he head-butted his nurse when he had attempted to redirect DH from entering another patient's room.  is he free to be up and wandering around? That seems scary considering his anger and aggression. Do they provide any kind of activities or exercise for him? 

Joydean

Jm when you describe the Seattle VA hospital it so reminded me of the Dallas VA hospital! I had to take my dh to the ER there last year. My husband kept asking why did I take him to jail. The room they took us to did have bars on the door and one of the va police put a chair right in front of the door and he did lock it. I was kinda nervous myself. There were lots of their police walking the hallway in ER. As soon as I had given the lady at front desk his ss# and they pulled him up in showed him as Alzheimer’s patient. Finally a psychiatrist came and they let him in the room. He upped his meds and sent us home. In all honesty I was relieved to get a way from there. If dh had been aggressive the doctor said they would keep him for 7 days. He wasn’t but he was suicidal.  I know this doesn’t help in anyway but it just brought that experience back to me.  I don’t know if Seattle hospital is full of their police.

jmlarue

Joydean - The ER in Seattle isn't quite that scary. They do have Security guards, but their uniform is more casual than the typical military police - dressed in blue with badges, insignia, and a tactical belt that all implies forceful authority. That first locked room is called Triage, where the patient is assessed for their potential to harm themselves or others. Given the sheer number of PTSD patients who are suicidal or violent on admit, a locked Triage room is a necessity Once admitted to the ER, itself, it looks very much like the medical setting at every big hospital ER. Main doors are locked to prevent unauthorized entry, but not exit.

The Psych Unit is a locked facility because most patients are admitted involuntarily and would be exit-seeking within a short time. The unit, however, is like other hospital wards of private rooms, no locks, and without individual bathrooms. The toilets and showers are communal - very much the military way. There is a large lounge area where inpatients can watch TV, read, do puzzles, or just and talk with other patients. There are no organized group activities aside from meals. 

The biggest deficit of all Psych Units is that they are not really conducive to housing or treating elderly patients with dementia. I was told that the Seattle unit has about 35 beds and the population is, by far, younger vets suffering from various psych issues related to PTSD and self-medication. They may be psychotic or delusional, but they are not cognitively disabled, like a mid to late stage dementia patient. Geriatric psychiatry is often a consultant, but not a member of the main psychiatric team. The VA makes extensive use of medical Residents doing a few months rotation in the Psych Unit to gain practical experience, but few intend on making psychiatry their specialty. Next month they may go to Pediatrics or Orthopedics for a Residency there.  I think the Seattle unit has a team of 4 board certified Psychiatrists in charge, and all of them also handle outpatient consults throughout their day. They do "morning rounds" of the in-patient population and set the care plans to be carried out by Residents and nursing staff.

As most of you know, this isn't my first rodeo admitting my LO for inpatient psych evaluation and treatment. I think most of these in-patient facilities (not just the VA) are wholly inadequate at treating psychotic behaviors of the demented and dying brain. A reasonable person knows dementia can't be fixed and the drugs used to modify behavior often stop working as the dementia progresses. The best we can hope for (it seems) is sedating our LO into a manageable state so we can continue to care for them at home or find placement in a care facility. For the Caregiver, it really is a last resort option and I will always regret that I had to choose this path.

MaryG123

I know regrets are inevitable jmlarue, but you had no other choices.  I'm so sorry it's a painful one, for both of you.

Ed1937

Jm, I'm sorry it is so darn hard to find the kind of help that is necessary for some of our LOs. Sending good thoughts and prayers your way.

jmlarue

Finally - I received a call from the VA Psych Unit. Not the head doc (as I requested), but the Psychiatrist assigned to him as primary. We talked for about 45 minutes and covered many of my concerns that DH is not receiving any benefit from the drug therapy they have chosen (Haldol). This was a change from taking Seroquel for almost 3 months, with little effect on controlling his hallucinations, anger, and aggression. I reminded her that the primary goal of his admission to the Psych Unit was to evaluate and modify this behavior so that he can be accepted into a VA care home. After nearly 7 weeks, we are no closer to that goal. I expressed my frustration that they are slow to concede that a medication is not working. I got the answer I've come to expect - "we go slow on titrating the dosage as we try to find the correct "therapeutic" dose for him." While I appreciate that there are risks to all of these anti-psychotic drugs, I reminded her that keeping him involuntarily committed to the Psych Unit for months, while they slow-walk his treatment, isn't an option. At some point, the Superior Court Judge is going to be reluctant to rubber stamp that commitment. It won't be convincing that he should remain in their charge when they can't show evidence that his treatment, thus far, has had some benefit. Since the option to send him home to my care is completely off the table, time is of the essence in finding a solution to his dangerous behavior. No, there is no firm "treatment plan," no timeline that I can hang my hat on or hold their feet to the fire about. They intend to continue with the Haldol. All I could say was that my patience was finite. I need to hear some positive report that the Haldol is working over the coming week to 10 days or I will insist that changes be made.

I wish I could say I felt reassured that anything much will change as a result of this conversation. Fact is, I don't have a cudgel to beat them over the head with. The entire situation is really beyond my control. It doesn't help my anxiety that I am unable to see him to confirm with my own eyes what his condition really is. Even if I were able to see that he's lost weight or appears unkempt, overly-sedated, or completely off the rails - what could I do about it? Calls to the Patient Advocate go unanswered. Letters to elected officials are deferred while they "investigate." I haven't tried going to the VA Hospital Director (as Jo C. suggested). I'm so tired of tilting at windmills with no results to show for my efforts. Today, I feel quite hopeless. Maybe tomorrow I'll get mad enough to pick up my lance to go in search of windmills again. I need to remember, Non carborundum illegitimi

Jean

Joydean

Jm I’m so sorry you didn’t get any information to at least give you hope. Sometimes I think they are slow with the drugs is because years ago the VA was quick to give lots of drugs which many of the vets got hooked on. So many of the vets do have PTSD, that’s one of the first things listed on my dh’s record! 

All of this doesn’t mean we stop praying for miracles! Hugs for you and PLEASE take care of yourself!!!! 

jmlarue

Thanks, Joy, and to everyone with kind words and advice. One way or another, we all seem to get through these hard times with a little help from our friends.