DH home from VA Psych Unit - 2 Week stay

jmlarue

DH was discharged home at my request (see previous posts). I'm wondering how the staff comes to their conclusions. The whole point of the Psych Unit commit was to get a handle on the hallucinations that had prompted DH to lash out at me. Every time I called that unit to ask how DH was behaving, the pat answer was: he's been calm, no signs of anxiety or agitation, and no indication of hallucinations. This evening, he repeated the main hallucination/fear that started all his, namely, "Those people are planning to take my house away." The only thing I can figure is that no one who counted was either: 1. Not in the unit during the evening to witness the witching hours, or; 2. Had stopped talking to or listening to DH's ramblings. He didn't get belligerent or act aggressive toward me, thankfully. I'm having some serious doubts, however, that the Seroquel is making much of a difference. I have a video visit with his regular geri-psych on Wednesday and will bring up the idea that we need to explore the idea that he has mixed dementia - vascular and FTD.

Just for the record, DH's admit to the hospital has definitely added to his confusion as to time and place, as well as his own identity. He's also more helpless as far as his ADLs are concerned - brushing teeth, brushing hair, dressing/undressing, etc. I suppose that could be blamed on the staff actually assisting him in these tasks rather than prompting him to do it himself. Hoping this isn't the new normal.

It is imperative that I find permanent placement in a memory care facility soon. My mind hasn't changed on that issue. He's ready and so am I. I dare say, it wouldn't take month for him to acclimate to a new home and forget the one he left. He really has little memory for who I am any more, so he won't miss what he can't remember. I don't expect placement will beget a lot of trauma or drama for him. That eases my mind and seals my resolve.

Joe C.

Jm, Sorry you didn’t get a better result from the VA hospital staff/system. Stay strong as you as you proceed with your MC search and placement decisions.

Ed1937

Jm, I'm sorry things worked out that way. You would expect something a little letter than that. Hopefully they'll be able to get his meds straightened out, and he'll be more "normal". Fingers crossed that you can find a MC to take him soon.

toolbeltexpert

Jm so sorry your back in the same place again. Praying for your dr visit and a great place for your dh.

Jo C.

J; what a difficult time trying to work with and then around the VA system in Psych.  It is terrible you had to go through that, but you have achieved what you strongly felt was right in getting your  DH back home so as not to lose your rights to make decisions for him and his care needs.

There is something that has been niggling at me - I think, with the strength and frequency of his delusions and lack of response to Seroquel , it would be a good idea when seeing his dementia specialist to have him re-assessed to determine whether he has Lewy Bodies Dementia or not.  You mention FTD; his symptoms do not seem to fit that diagnosis. Most often, in FTD one sees changes in mood and personality, but hallucinations are rare.  Your husband is driven by hallucinations.

LBD does not need to have a co-commitant diagnosis of Parkinson's. LBD can happen without that.  The florid delusions, the lack of medication effect, the triggering all are hints that the diagnosis for type of dementia may possibly be in question.

In LBD, hallucinations are common and another difficult issue with LBD is that medications used in other forms of dementia are not effective; in fact, in some cases can even make things a bit worse.

It would be a good idea to have this checked out asap. If he goes into care and his behaviors become a significant problem issue, then he would be at risk for being asked to move or for being admitted to Geropsych to try and assist him. Better safe than sorry on that one by having the right treatment for the accurate diagnosis; you do not need any more upheaval than you already have had.

I can imagine that you may be burned out and exhausted after so much has happened that has required so much of you and I am sorry. Just one last re-assessmen, to ensure treatment is on the right path for that accurate diagnosis, I would certainly ask for that diagnosis re-assessment and that ruling out LBD be part of it..

Holding you in thought and so hope all goes well as you make the long term plans.  Let us know how you are, sure will be thinking of you.

J

Gig Harbor

Jm I hope you find placement soon. There are so many facilities that hopefully you will have a choice of locations. Of course for your husband a VA facility would be the best. I know that in Orting there is the Old Soldiers Home. I agree that once you find a place for him he will settle in quickly. My husband sometimes has a puzzled look as though he sort of remembers his past but he can’t verbalize it and has never asked to go home after the first day. My fingers are crossed that you find someplace that works for him as soon as possible.

MaryG123

I wonder if your home might be a trigger for his paranoia.  Hang in there jmlarue.  You’ve got this!

Joydean

Jm, I hope you will get some better answers tomorrow from your dh’s regular doctor. So very sorry and disappointed with the outcome of his stay at the VA place. It does appear they were not really observant. With everything else it’s kinda scary about using the VA. 

Prayers for you and your dh. Glad you did get a little (very little) rest! Take care. Will be thinking of you tomorrow. 

MaryG123

I’m thinking about you this morning jmlarue, and hope you’re okay.

jmlarue

Thanks for thinking of me. DH is home. Still experiencing hallucinations and anger issues, but is not lashing out at me like before - thank God for small favors. The search for placement in memory care is ongoing, bur enormously frustrating. Wait lists are long in the 2 VA facilities in our State. Because my DH receives a monthly disability check from the VA, his income is too high to qualify for Medicaid, but only 1/2 the monthly cost of private care. Like so many others, I'm just treading water.

Sign above the door to Dementia Hell

"Abandon Hope All Ye Who Enter Here"

Jo C.

So sorry, jm for all that is happening.  However; about the income keeping a person from qualifying for Medicaid LTC - in most states, if a person qualifies for Medicaid LTC in other ways,  but has too much income to complete qualification criteria, there is a way to eliminate this as a problem.

In most states, only the income in the LTC applicant's name counts. Any income in the non-applicants name is NOT counted.  So any SS, Pension, IRA, etc in your name only would not count.

However, if the applicant alone has too much income to qualify for LTC, but not enough to pay for the cost of a facility - here is what can help, but many people do not know about this.

Most states have a tool called, a, "Miller Trust," also known as a "Qualifying Income Trust." In these states, the applicants income can be placed into the special Trust.  Each month, when the bill from the facility is received, a check is written to the facility out of the Trust. Then; any shortfall for coverage of fee is paid for by Medicaid.  This is really something to look for and used as a tool when necessary.

Hope your state has such a Trust possibility; that could be the one step you need to have success in placement.  However, if the non-applicant spouse needs the income from their LO to meet the cost of living, then that is a challenge.

J.

jmlarue

Jo C - Thanks for that info on the trust. Can't get in to speak with my CELA until late August. Will be seeking advice on getting Guardianship of DH in light of the VA Psych Unit essentially ignoring my DPOA and trying to cut me out of all medical decisions for him. Next item on the agenda is asset preservation and finding an avenue to Medicaid for him. We've done some of that prep work already, but it was with an eye toward the VA providing for his care in a Soldier's Home, rather than needing placement in a private pay facility. Now that I know the VA is long on promises and short on action, I need to find another route to travel. If a Miller Trust is the answer, I'm sure my CELA will propose it. I also have questions about his income being exempt from contributing to the expenses of maintaining our home and spousal support once he is placed in care. At that point, my income alone would be totally insufficient. If his income needs to continue to contribute to our household expenses, it may be possible to get the amount left to pay for his care below the threshold for Medicaid qualification - but I don't know that. 

You know, of course, that needing to consult with the CELA again is going to mean another $2K or more in unforeseen expense, more hoops and paperwork, and more long waits for answers. It really becomes overwhelming when most of us caregivers are already stretched to the breaking point just caring for our LOs through these 36-hour days. I yearn for the day when I no longer feel compelled to wake up early and put on armor to make it through the next battle.

P.S. Independent research shows that Miller Trusts are not available in Washington State. There may be a trust with a different name that accomplishes the same thing.

Jo C.

So; you are in Washington State - it appears that Washington does not have Miller Trusts for Medicaid purposes.  Here is an excellent explanation about such Trusts along with a listing of the states that have them - interesting in that Oregon has this vehicle; just a hop, skip and jump from you.   It will be interesting to hear what your CELA has to say regarding how one can work around such an issue.

https://www.medicaidplanningassistance.org/miller-trusts/

It is really an excellent idea to look into legal guardianship; the VA stance on their taking complete control was a jaw dropping stunner.  Still disturbing to think about that for people who may have no other alternative due to their circumstances.

By the way; you are a very good writer - do you have a background in writing?  Certainly do have a way with words.

I hope that things are still relatively on an even keel at home; I have been thinking of you and hoping that the seas are still calm.

Sorry about Washington, that is a disappointment.  California does not have such Trusts either - shucks.

J.