Conversation with DH's Treatment Team @ the Psych Hospital

LadyTexan

Today I had the 1st phone call with my DH's treatment team. The team is made up of a medical doctor, the psychiatric practitioner, nurse and someone else...maybe a social worker. It happened so fast that I did not get all the names or the related credentials. There will be a follow-up call tomorrow.

Today is DH's 5th calendar day in the psych hospital. Per the treatment team:

• DH is back on the same meds. The dosage on some meds has been increased. 
• DH is sleeping well, eating okay and participating in activities.
• DH is no longer suicidal.
• DH's current MMSE score is 7. Note: DH was last tested approximately 2 years ago. His score then was 13.
• DH will need 24/7 care and supervision when he is discharged. DH needs custodial care but does not need skilled nursing care.

That's the latest on this dementia saga.

jfkoc

Thank you for the update. The report sounds promising...hope you can rest a little easier.

Ed1937

It sounds like there are a few things going in the right direction. That's a win! Thanks for the update.

Joe C.

LT, Good news that he is back on his meds and reportedly stabilized. I now the recommendation of custodial care must be difficult for you but given all that has transpired it may be the best for all. Hang in there.

M1

Well at least it's a start LT.  Thinking about you....

Quilting brings calm

Sounds like they have your husbands care well in hand so far.  I don’t think you are surprised by the custodial care requirement - you’ve been facing that since the day he went to the ER.  However I know you are still trying to process this sudden change.  Like others on this forum, you had probably hoped for an orderly move from home  to facility  when the time came,  instead, you got  chaos.  This disease breeds chaos. 

I hope you are continuing to self care.  

Mint

Thank you for the update.  Sounds like he is in the right place.  You take care.

David J

Thinking of you, LT, and sending best wishes. It sounds like things are going well in the hospital, and custodial care is what you expected. Hang in there.

Suzzin

LT, thank you for sharing your journey with us. You are helping me to understand and take necessary steps, and as heartbreaking as this has been for you please know you are also doing good things for others with your openness.  You are in my thoughts every day, I'm hoping each day gets a little better for you all.

Lorita

Good news - hope that will make you rest easier.  Have you heard anything from the VA about possible care through them?

June45

Thanks LT for taking the time to update your cyber family.  I would imagine that you still have much to process and to plan.  Hugs and prayers.

Jo C.

Dear Lady T, we are all thinking of you, so thank you for updating us.   It is good to hear that your DH is doing well and responding well to treatment; that is great.  While he is there he has none of the silent triggers he had at home, so treatment seems much smoother.  I know that you expected him to have to be placed, but to hear it confirmed in concrete terms must still have been a bit breathtaking.

How are YOU doing?   I cannot recall how much family or others you may have who might be supportive.  Seems though that as dementia moves forward, some or a lot of those who were close to us are no longer that close.  I think dementia must scare them away in one way or another.

I so hope you are able to find your way to treat yourself well and get some rest and respite.   So much to get settled, but bit by bit you will get there.

Lots of warm thoughts being sent your way,

J.

Marie58

Thanks for the update. Nothing about any of this is easy, but it sounds like they have a good handle on things. Take care of yourself. Thinking of you.

Crushed

Just remember the medicaid definition of needing a SNF is different from their evaluation

  https://www.medicaidplanningassistance.org/activities-of-daily-living/

Importance of ADLs / IADLs for Medicaid Eligibility

  There are three types of long term care provided by Medicaid; Nursing Home Care, Medicaid Waivers and Aged, Blind and Disabled Medicaid and ability to perform ADLs and IADLs can be used as qualifying criteria for all of them.

The ability / inability to independently complete daily living activities (both ADLs and IADLs) is often used as a measure to gauge one’s eligibility for long-term care Medicaid. Stated differently, in order for seniors to be eligible for long-term care Medicaid, they must demonstrate a functional need, sometimes called a medical need, for the Medicaid program for which they are applying.

For HCBS Medicaid waivers and nursing home Medicaid eligibility, often a nursing home level of care, also called a nursing facility level of care (NFLOC), is required. (HCBS Medicaid waivers provide long-term care in a variety of settings, such as one’s home, adult day care, assisted living, memory care, and adult foster care homes). When determining if the functional need for NFLOC is met, ADLs and IADLs are often considered. For instance, the need for assistance with a specified number of daily living activities might be required.

Long-term care services, such as personal care assistance and homemaker services, may also be accessed through one’s regular state Medicaid program. (Regular state Medicaid for seniors is commonly called Aged, Blind and Disabled Medicaid and is abbreviated as ABD). While a medical need must still be demonstrated, the level of care needed is generally less than a NFLOC. However, it is the inability to complete daily living activities that is generally still used as a factor in determining functional eligibility.

LadyTexan

@Crushed - Thank you. I am meeting with an elder law attorney on Thursday to start the medicaid application process. On a separate note - I may also pursue guardianship.

I spoke with DH's therapist at the psych hospital yesterday. The discharge date has been scheduled for Tuesday 6/15. I informed the therapist that I am not confident that both DH and I will be safe if he returns to our home.

DH wants to come home. I want DH to come home. But we all know that I cannot care for a man that is a threat to my safety.

My brother and SIL came over yesterday to discuss my options. We talked in depth about how the conditions that existed, before DH's suicide attempt, that upset DH so much, are the same:

1. The guns and ammo are gone and they are not coming back into our home as long as DH lives.
2. DH still needs assistance in the bathroom and I will continue to help him. Additionally, he will lose other abilities as well. He will likely continue to be resistant to my assistance.
3. DH's dad is sill deceased.
4. DH still has Alzheimer's disease.

Brother, SIL and I further discussed what has changed in our home that may minimize the risk of this awful scenario happening again:

1. DH is on his meds again and the meds have been adjusted to reduce his agitation.
2. DH is (currently) aware of the consequences of his action. Of course that could change at the drop of a hat.
3. We will have home health workers come in to assist and reduce my work load.
4. I can (and will if DH returns home) develop a more structured routine that we follow every day. 

SIL who is a social worker asked, how many times am I going to go through chaos before I make a change. My answer: one more time.

I do not believe I will be able to care for DH in our home until his death. I do believe that I can care for DH in our home now with assistance. I know that DH will likely end up in a facility before our dementia saga concludes. 

I have told myself many times, do not let a crisis go to waste. Meaning, this crisis is an excellent opportunity to transition DH to a facility now. As a result, I could transition from caregiver to wife. 

Here's what I mentioned to my best friend when she was faced with an opportunity to place her father:

1. Where will he be safest?
2. Will he be well cared for in the facility you choose?
3. Would he want you to exhaust yourself caring for him?
4. Would he want you to go back to being his daughter and not his caregiver?
5. Your father loves you. 
6. He wants you to be happy. 
7. What he wants is what is best for you.
8. Only you can decide what is best for you.

These thoughts are heavy on my mind today. 

M1

LT:  Every bone in my body says, Don't bring him home.  I think this is extremely dangerous.

dayn2nite2

Your SIL, who is a social worker by profession, is indicating bringing him home is not a good decision.

She is correct in assessing the prior episodes as "chaos."  Nothing has changed at home or with him.

You say you will bring in help at home, but the fact that you hadn't before (probably due to his resistance) doesn't give me faith that you will this time.

Please reconsider.  You always end up in this position, with him having to be taken on an emergency basis to a psychiatric unit and you deciding to give it another chance.

He needs a locked, secure facility with staff who are alert 24/7.  Your life is at stake here.  He can kill you without weapons.  He can kill himself without weapons.

Quilting brings calm

LT- 

Please tell the powers that emphatically that you CANNOT care for him at  home as your safety is severely at risk.  Telling them that ‘ you are not confident ‘ allows and encourages them to just turn the situation back over to you.  They need to find him a place to go just like the hospital found this place.  You can then continue to get the financial  structure in place ( as much as possible) then figure out which facility you want long term.  

He is only going to continue to progress and although he supposedly doesn’t need skilled nursing, he presumably will before long.  That is just my guess based on the MMSE score you mentioned. I know you feel like it’s you responsibility to figure out where he goes as opposed to the professionals do it, but I suggest you turn decisions over to them for a while and you continue to self care and talk to a professional about your own needs. 

You’ve not outlined your financial situation.  I know you are both too young for normal Social Security  - has he been put on social security disability?   I would think he could still get that even if he took early retirement from somewhere.  I don’t know the Texas state rules for institutional Medicaid and the impacts on the spouse, but hopefully  you will retain the house, car and some savings.  

jfkoc

Against all common sense I know I would bring my husband home but I would not do so.....repeat NOT...unless Plan B were firmly in place.

I do know my action would not be reasonable.

Joe C.

LT, From one person in recovery to another, how many times have you heard I’ll have just one or “one more time” that ended in disastrous results. I have been in recovery for coming up on 38 years and in that time I have watched many people destroyed by just “one”. Although we are talking about something different here, when I read your response to your SIL, “one more time” what came to my mind was what happens when someone dealing another disease makes that decision. PLEASE consider the possible consequences of your decision and follow the advice of experts.

Mint

(((Lady Texan))). Your husband has shown very aggressive tendencies. Am very concerned about your safety and safety of any caregiver you employ.    My concern was and still is  what happens if he injures you or kills you? What if he injures or kills the care giver?  Are you going to inform the caregiver about what has been happening before you hire her?   If you do may be hard to get some one.  If you don’t will you become responsible if you don’t and something happens.   If something not good happens he will then be in the legal system and charged with a crime.  They will then make the decision as to what will happen to your husband.  Something can happen even if two of you had 24 hour surveillance of him in a room with nothing in it.  ‘  Yes he is taking his meds now but as soon as he gets home and something triggers him he may well refuse them again.  That is the one bit of control he still has.

When I worked I saw two distinct groups of patients.  Some were way better when their family was there as it made them feel safe.  Others acted out terribly when their family was there, but we had no trouble with them as soon as family left.  My thought process was that they expected a familiar person to fix the problem and let them have their way.  They didn’t expect us strangers to do that.  Don’t know if I was right or not.  Your husband seems like he is falling into that category of acting better for others.

Take care Lady Texan, care about you and want you and your husband to be safe.  Know it is hard for you right now.  

harshedbuzz

Lady Texan-

Do not be that cautionary tale we will tell to new members with concerns about agitation and aggression about worst case scenarios.

You have dodged a bullet. You were spared your husband bashing your head in with a sledge hammer. He was spared the realization of that action in a moment of lucidity and being sucked into the criminal justice system without an advocate. You were also spared the mental image of the agony of his death by self-immolation every night when you close your eyes to sleep. The next chamber could be loaded. 

Nothing has changed. He's compliant now, but given his past behavior- whether a function of the disease, his personality or the dynamics of your relationship or some combination of the three- you probably won't be able to keep him compliantly medicated. He deserves a level of care that can keep him safe and on the medications he needs to quiet his mind. 

None of this is fair, of course, but nothing about this wretched disease is fair. Sure, there are some like jfkoc who would and could safely bring their spouse home. It reminds me of the notion that while we are all in the same storm, we are not all in the same boat. 

HB

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The user and all related content has been deleted.

dayn2nite2

Speaking of the legal system, if he injures or kills you, there is no get out of jail because I have dementia card.  He will have a protracted court case and will be in jail for the duration because you will not be able to bail him out.  He will likely be hurt or killed in jail because he is vulnerable.

Bringing him home is dangerous for him too-just not in the way you’d think.

I know you’re wishing something is different and he can come home, but let’s face it, your husband got the violent and aggressive variant of dementia.  I doubt he even has Alzheimer’s, more likely FTD.  This situation is too difficult for one person to handle.  He needs 3 shifts of multiple people.

There is a saying here that your plan needs to be able to handle him on his worst day.  Home is not a good plan.

Cynbar

Your SIL's advice was a little off --- this is not more chaos you are risking, it's more threats to the lives of both of you. His brain isn't working right, it is your responsibility now to do what is best for everyone. He needs to be protected from hurting himself, and from the pain and guilt and legal consequences of hurting you. How would he manage in jail, how much treatment do you think he would get? This plan is madness, I'm surprised the hospital would even entertain it, given the history here. Please reconsider while you still can.

Marta

LT:  please heed M1’s and everyone’s response below his. They know of what they speak.

Jo C.

Off with my Peer Volunteer hat.

Your husband has been in psych care now for only nine days; when he discharges he will have been inpatient care only 12 days - the day of discharge does not count.  No one knows what will happen with all the dynamics once he is in a different setting over time.

Both as a private person who has cared for LOs with different dementias, (one with FTD), and as an  RN who served as Adminstrator of Patient Care Management; right or wrong, I cannot disagree more at this point in time.

I was stunned by what you have written.  NO: it is highly, highly unlikely that he does NOT truly reality based realize the depth of consequences of his actions.  That is a temporary spate of words made while in a care cocoon that in all probability may even have been guided by someone else's input.  I would not count on that as a measure of where he is at in this sad situation.  His reasoning, logic and judgment as well as his potential for impulsive and violent behaviors done in a second's impulse are highly compromosed and meshed together.  Nothing has really changed as yet that can be determined in an objective, measurable concrete way - that must yet be determined after his discharge and return to a different setting..  NOTE:  The triggers contributing to his behaviors that exist at home are all still there waiting.

That you are even considering this at this point puts a frame around the subtle gaps in recovery where co-dependence and "one more time," seems like a good thing to be doing when all reality decries this.  You love your husband and you care; that is iunderstood.  However the plan to return him home after this very short sojourn after such potentially deadly violence may well be driven by a very subtle co-dependent sort of thought that is flying in the face of logic.   I wondered if you were moving to do this is because of financial needs; but even then, the costs both financial and otherwise will be HUGE if something violent occurs either to you or someone else  

As it is; your husband may be the one who may be failed.  He is safe at this time, he is not in the arena of the driving triggers which appear to be home, and  sadly also, you.  Time will tell what the actual results will be. 

How awful it would be if anything happened in your home to you or to anyone hired in to help; what then?  Life could well fall apart for both of you in a way that could carry significant long lasting consequences.

We here cannot control any of this, we can only share common sense input in hopes that you will see the situation clearly without blinders or old tapes playing that drive you in such a direction too early and give it some further thought.  It has only been such a short time since his involuntary psych hold began; nothing has been proven over time in a different setting which seems would be important.  There is an opportunity to do that.

If the faciilty staff is pushing or supporting your taking him home at this point in time; that is the course of least resistance for them because then they do not have to do laborious discharge planning.  Having your husband moving directly into appropriate, safe care from his present short time psych setting would be the smoothest and least upsetting way of getting him into an environment capable of caring for him on a 24/7 continuum which could be an intermediate step.   You do not have to take him home due to the history of violence; you cannot be forced to do so.

Please re-read all the posts starting with M1 as Marta outlines; then read them again also paying attention to Armyvet who outlines the escalating violence.  (I too have wondered if your husband did indeed have FTD rather than Alz's; I would not be surprised.)   In any case, that is not important; what is crucial is what is now on the tracks with you finding yourself driving a careening train that has a nebulous unknown destination that has as yet, no concrete ability to determine if it will crash or not..

There is no way to say more than what has already been said by so many.  We are not able to do anything more. Some chances are dangerously not worth taking without further safety measures to determine realities..  If chaos and danger and having others giving ongoing sympathy  is important, then I guess that could possibly be part of it; I certainly hope not and would not think so.

You have time for him to be in safe and appropriate care and have time to see how the dynamics play out.  Safe for him, safe for you.  Strongest wishes would be that he would no longer be violent and would have turned a corner.  For myself, I have had times when I thought my FTD LO had "turned a corner," only to be dashed against the harsh rocks of reality when that turned out to be my false beliefs.  Hope springs eternal, but reality does out.

Only time will tell. 

Stuck in the middle

I know how you feel, L.T.  I have similar thoughts about my son some times.  I hate that he lives in an RCF.  I want him to get a job, home, car, etc.  But then I talk to him and am reminded that he still doesn't grasp his responsibility for the things that got him fired from sheltered workshops, evicted from apartments, arrested, etc.  Yes, I want a better life for him.  People in Hell want ice water, too.  I have to accept that he has adapted pretty well to life in the RCF, where he gets his meds on time and the voices in his head are quiet(er). 

My son's RCF is closing at the end of this month and he has to move.  The idea occurred to me that I could rent him an apartment . . . and get him a car . . . and there are "Help Wanted" signs all over town . . .  And then I quit wishing and went back to thinking.

LadyTexan

I hear you loud and clear. 

I value your input. I am re-reading your posts. I am trying to make the best decision for my husband and myself. I do feel pushed by the psych hospital. 

I feel so lost and so unprepared. 

Stuck in the middle

LadyTexan wrote:

I feel so lost and so unprepared. 

Me too.  I've been on this road for 50 years, and the only thing I'm sure of is the need to push back some times.  Special education departments, hospitals, etc. have their own problems, and they will solve them at our expense if we allow it.

You would say "No!" and mean it if the hospital pushed you to take some strange, dangerous man into your home, wouldn't you?  As others have said before, this isn't the man you married.

LadyTexan

Jo C wrote:

If chaos and danger and having others giving sympathy to, "poor you," is important, then I guess that could possibly be part of it; I certainly hope not.

LadyTexan response:

For the record, I do not participate in this forum for sympathy. I am not a victim.