Consults with VA Social Worker Consistently Discouraging

jmlarue

DH has been receiving in-patient treatment at the VA hospital Psych Unit for 3 1/2 weeks. The assessment from doctors and staff is that he has not exhibited any of the hallucinations, paranoia, or angry lashing out that drove me to have him admitted for inpatient psych eval and stabilization. I have no expert opinion to explain why it would be the case that he would present such a danger to me while he is at home, but not present such a danger to personnel or patients while in the psych unit. My best layman's guess is that, so long as he is not at home surrounded by all of his possessions, he no longer imagines the threat of people attempting to steal from him or threatening to take his house and force him to leave. Perhaps, that explanation is too rational for his demented mind, but it makes sense to me. I made the mistake of bringing him home before and the irrational and dangerous behavior immediately resumed.

In talking with the Social Workers responsible for finding LTC placement for DH on discharge from Psych, I'm constantly having to fend off the suggestion that he could return home to my care or that I should explore availability of care in our community - even though it would mean paying the full cost myself. The last resort is impoverishing ourselves in order to qualify for Medicaid. This is the easy "out" for the VA Social Worker, who claims there are just are no available beds in the VA system and it could be a long wait for one to come available. The sword they hold over my head is that DH would need to remain in the Psych Unit or the hospital many months beyond what he needs for treatment. In a word, "warehoused" and under the care of people with little or no dementia experience or training. None of these options is acceptable to me, of course. DH is entitled to care in a VA soldier's home, free of charge, to his end of days. As his spouse, I am also be entitled to that benefit if/when I need it. Getting the VA to honor that commitment is proving difficult, if not impossible.

I am desperate to find a sledge hammer to bring to this fight. The VA must be forced, apparently, into doing what's right by this Vietnam Veteran whose military service resulted in his 100% disability. The government broke him, can't fix him, but is obligated to take care of him. I've considered contacting our U.S. Senator and/or retaining a lawyer. I'm open to any and all suggestions the members of this forum can offer. I've tried being patient, nice, and reasonable. Now, I'm looking for a nuclear option.

Quilting brings calm

I would keep doing what you are doing.  They are threatening you with him staying where he is until they find a place.  Your response should be that he is doing better  there than he was at home.  At that point, they will have an incentive to  find him a place because they will want to open the spot up where he is.  They obviously want it open as soon as possible or they wouldn’t be encouraging  you to take him home

Lynne D

I have no suggestions, but you have my sympathy and admiration. 

How to elevate the issue? When I worked for Medicaid, dissatisfied recipients would contact the governor’s office, who would bend over backwards for them and bend the rules. That, of course, is a federal/state program administered by the state. Who to contact at the VA? Target a politician? 

Do they indicate how the prioritize placement, and where your husband stands? 

It seems he is more at ease in the psych unit than at home, so at least you have that. 

I know you won’t let the, bully you into private placement.

Caring4two

Contact your state senator. Tell them your story. Sometimes their involvement can speed things up at the VA. My husband was a Vietnam vet. I had to involve our senator to get approval for adult day care paid for by VA.

Joydean

I agree with QBC, they know you gave in once and all they have to do is just keep pushing your buttons. I don’t know anything about your congressman but have you considered the guy ( can’t remember his name right now) that’s head of the Veterans Administration? He makes a lot of speeches about how much they are helping veterans. What about news stations? All of them not just your local news. The only ideas I can come up with for now!  You should not have to fight so hard! I will be interested in what you do because as you know my husband is a veteran. Prayers for strength to you.

Joydean

Va secretary Denis R McDonough

ImMaggieMae

Jmlarue, have they changed his medications while he is in the hospital psych unit? Could that be why his behaviors have changed? Is he doing ok there? I would think they would want to get him out of there too and free up the bed. Why not just hold your ground and wait it out for the VA unless there is something wrong with the hospital.

jmlarue

Quilting - I think you're correct. It's to their advantage to coerce me into taking him home and letting the VA off the hook. I have no intention of doing that. My health is too fragile. I'm diabetic, have had 2 heart attacks and a stroke. My blood pressure was right up there at stroke level before DH was admitted to Psych. After 3 1/2 wks of self care and the assistance of my doctor, my risk is lower, but not out of the woods yet. I believe placement for my DH is my only chance to survive him and this d*mn disease.

Lynne - No one show's their cards on waiting lists, how they prioritize patients, or what criteria they use for accepting a patient into care. In addition to my U.S. Senator, I will keep Gov. Inslee's office in mind - in spite of the fact that I despise that man and everything he stands for.

Caring4two - It's good to know that you received help through your Senator. That is the most encouraging word I've heard lately.

Joydean - Thanks for the name and saving me the search. It's certainly worth a try contacting his office if I can figure out how to run the gauntlet to get to him. The VA is expert at throwing up barriers, beginning with a phone answering system that says things like, "Your call is important to us. Stay on the line and your call will be answered in the order received. You are caller number 76."

jmlarue

MaggieMae - Nope, no change to his meds. He's taking exactly the dosages and times of delivery I was doing here at home. The one thing that has changed is that he is now urinary incontinent. That's always been a line in the sand for me. I can't and won't take on the additional mess and labor of caring for a person with incontinence. It's physically impossible for me to wrestle his size, weight, and obstinance.

M1

JM there's no downside to contacting both of your senators and your Congressperson.  The house reps are typically more responsive to these things than the senators, in my experience.

Gig Harbor

A friend of a friend had her husband in the hospital and absolutely refused to take him home. Miraculously the VA found him a bed at Retsil. She had tried her best to care for him at home but finally couldn’t. Keep refusing to take him home. They will move him to the top of the list to free up their hospital bed.

jmlarue

Gig - Thank you for the encouragement. It's good to know that someone has had a positive outcome with the VA by standing firm. I need to be a force to be reckoned with for my DH's sake as well as my own. For reasons I don't fully understand, he does not feel secure or at peace in our home and I am placing my own health at grave risk by pretending that I can handle the psychotic behavior and the overwhelming demands of 24/7 caregiving with no help and no respite.

M1 - I appreciate your thoughts on contacting all of our elected officials. Perhaps, there will be an extra incentive for them to take up the cause of their constituents since this is re-election time for at least two of them. No better time for tilting at windmills than an election year.

I am awaiting a return phone call from the Patient Advocate at the Seattle VA. Let's see if that rattles any cages this next week.

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Crushed

This is the easy "out" for the VA Social Worker, who claims there are just are no available beds in the VA system and it could be a long wait for one to come available

As ALWAYS i ask people to put their state of residence in the profile I can't check the waiting

 Waiting lists are real 

As the availability of VA nursing homes within a state, and beds within the facilities, are limited, there may be a waitlist for admission. This is particularly true for veterans who require Alzheimer’s care in a memory care unit. The wait for an available bed varies, but could be weeks, months, or even years. Veterans dually eligible for VA health care and Medicaid may find shorter or no wait periods with a Medicaid nursing home.
  https://www.medicaidplanningassistance.org/veterans-nursing-homes/

  I saw Inslee so you are washington state

Wash. Admin. Code § 484-20-023 - Admission to a state veterans home

• ompare

Current through Register Vol. 22-07, April 1, 2022

(1) Each state veterans home maintains several waiting lists, one for each program or service offered. The names of applicants approved for admission shall be placed on the waiting list for the program or service which the admission team has determined shall be most appropriate based on their health care/service needs. Applicants shall be listed in order of approval.

(2) Applicants are admitted from the waiting lists in the order in which their applications are approved; subject to bed availability in the program or service area for which admission has been approved.

(3) An applicant may be denied admission, or be moved from one waiting list to another when in the interim between application approval and scheduled admission:

(a) The applicant's health care needs have changed to the extent that the program or service for which he/she was originally approved can no longer meet his/her health care needs; or

(b) The applicant's service needs have changed to such an extent that the facility can no longer meet the applicant's health care/service needs.

(4) Any applicant whose name has been on a waiting list over ninety days is required to submit an up-to-date medical information form completed by his/her physician prior to being given an admission date.

(5) If an applicant declines a scheduled admission, (s)he will be placed at the bottom of the appropriate service waiting list. The next person on the waiting list will be invited for admission.

  
 
 Where are the State Veterans Homes located?
Washington Soldiers Home
1301 Orting-Kapowsin Hwy
Orting, WA 98360
Washington Veterans Home
1141 Beach Drive E
Port Orchard, WA 98366
Spokane Veterans Home
222 East 5 th Ave
Spokane, WA 99202
Walla Walla Veterans Home
92 Wainwright Drive
Walla Walla, WA 99362
How do I contact the Admissions Team?
Call 1-877-838-7787 or email us directly at:
• Orting: [email protected]
• Port Orchard: nichole.b[email protected] or [email protected]
• Spokane: traceysm@dva.wa.gov
• Walla Walla: [email protected]
Find out more about your Washington State Department of Veterans Affairs by visiting www.dva.wa.gov 

https://www.dva.wa.gov/veterans-their-families/veterans-homes 

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Ed1937

Another vote for getting your elected officials involved. Like you said, election time gives them a little more resolve in getting things done. They love positive public feedback, but hate the negative side. They would be the ones who could light a fire for you.

jmlarue

Crushed - I've done my due diligence, talking by phone with each Admissions Director and providing applications for admission at all four of the WA state VA Homes. Only two of these facilities have locked-door memory care units. The over-riding questions at the time of application were: 1, Is my DH exit-seeking? and, 2. Does he have any aggressive behavioral issues that would present a danger for staff or other residents? Exit-seeking immediately rules out placement in the two homes that do not have locked units. Aggressive behavioral problems pretty much eliminates placement at all four homes. At the time of application, DH was residing in our home. He did not exit-seek or wander away. He did not begin to exhibit the angry lashing out toward me until about 6 months after I had submitted his applications for admission. The kicker is that DH showed none of these disqualifying behaviors while an in-patient in the Psych Unit.

Additionally, I made phone contacts and application for admission at VA homes in Boise, ID and Yuma, AZ. I have ties to both these locations either through family or friends because of previous residency. If my DH can be placed in either locale, it is my intention to establish permanent residency in the same town.

I have not ruled out the possibility of  placement in a facility that is contracted to accept VA payment for his care. What I will avoid is the need to qualify for Medicaid assistance. Medicaid will require a spend down and a drastically reduced monthly income that would not allow me to pay the expenses to remain in the family home. DH and I have both worked too hard all our lives to wind up living in poverty throughout our remaining years. If Medicaid is the only option, I will not hesitate  to bring him home and private pay for in-home care. What raises my hackles is that DH is entitled to care in a VA home free of charge, or in-home aid and attendance paid for by the VA, and still retain his monthly disability pay to help support his dependent spouse and maintain the family home. The VA is failing to provide for either one of these benefits. It is insulting for the Social Worker to suggest we choose poverty so that the VA can shift the burden of paying for DH's care to Medicaid. I'll be damned if I will do that.

Crushed

jmlarue wrote:

I have not ruled out the possibility of  placement in a facility that is contracted to accept VA payment for his care. What I will avoid is the need to qualify for Medicaid assistance. Medicaid will require a spend down and a drastically reduced monthly income that would not allow me to pay the expenses to remain in the family home. DH and I have both worked too hard all our lives to wind up living in poverty throughout our remaining years. If Medicaid is the only option, I will not hesitate  to bring him home and private pay for in-home care. What raises my hackles is that DH is entitled to care in a VA home free of charge, or in-home aid and attendance paid for by the VA, and still retain his monthly disability pay to help support his dependent spouse and maintain the family home. The VA is failing to provide for either one of these benefits. It is insulting for the Social Worker to suggest we choose poverty so that the VA can shift the burden of paying for DH's care to Medicaid. I'll be damned if I will do that.

Have you applied for in home care and aid and attendance ? 

One problem is you use the term "entitlement"  and the long term care  statute is written in terms of eligibility

Aid and attendance is an entitlement 38 CFR § 3.350

What does your lawyer say you are a community spouse under medicaid

  
 

  

jmlarue

The aid & attendance was granted when DH's 100% permanent disability was granted 3 years ago. The social workers locally and Caregiver Support staff all assure me that DH is entitled to in home care because he's considered "housebound." Additionally, I am entitled to 30 days of respite care per year. The catch is, there is only one contracted provider of home care aides and they are located 45 miles away. They have no one available within acceptable commuting distance to our home. I can find aides and even adult day care locally, but they aren't contracted to the VA and I would need to bear the full cost.

Best analogy - It's like my state government giving me a $500 debit card to buy groceries, but I can only shop at a state run grocery store. Unfortunately, the shelves are bare. That $500 debit card is useless. Then, they tell me that after I spend all my cash assets for food, they will help me apply for food stamps so I can shop at Safeway.

It seems to me that making and enforcing laws is largely an exercise in semantics. A layman's view is that once a person meets the "eligibility" requirements for something, it then becomes an "entitlement." But, what do I know? When I was close to finishing my BA in Criminal Justice at Washington State, I had a professor tell me, "You know just enough to be dangerous." I think that's legit.

Crushed

jmlarue wrote:

It seems to me that making and enforcing laws is largely an exercise in semantics. A layman's view is that once a person meets the "eligibility" requirements for something, it then becomes an "entitlement."

Very roughly

 "entitlement"  You have a right to the benefit 

  "eligibility"    You have a right to a place in line

 

https://pathfindersforautism.org/articles/maryland-services/the-dilemma-of-entitlement-vs-eligibility/

https://pihec.com/wp-content/uploads/2019/10/Entitlement_vs_Eligibility_Final12_2016.pdf

The difference is fundamental to all government benefits. 

melvina30

I talked to the VA Home in Lewiston Idaho one month ago and they had no waiting list.  Might be an option.

jmlarue

Melvina - Thank you for that heads up. I'll be on the phone to Lewiston tomorrow morning.

Jo C.

Interesting in that my major was also in Criminal Justice and I was nearly complete for the degree then unexpected family circumstances abruptly arose.  By the time I was able to get back into university, I changed majors and got my RN and onto a Masters.  Life just makes twists and turns in our paths.

The only way I ever found a way to get through such dread circumstances, especially with a government entity, was to go around the main approach and work from behind with all bits and pieces I could manage to find.  It is keeping after things without letup that got matters addressed. Eventually.  Wonder what an attorney experienced in the VA would advise.

Often, both for myself and for patient's families up against the wall, contacting the government reps did indeed work.  Each office has staff that handle such calls.  I used the county government first, then state, and then federal.  Actually had good outcomes with much of it.

Persistence and many, many phone calls ad nauseum.  I once again send best wishes and sincere hopes that you are able to find this settled soon. 

J.

jmlarue

Jo C. -Thanks for your insight. Helpful, as always. I'll just keep plugging along. I need to think strategically. I've got some good ideas on directions to take when I run into these blind alleys. I'll be checking with both Lewiston, ID and Post Falls, ID state veteran's homes. The Post Falls facility is new - I'm not sure if it's even open, yet. Generally, one must be a resident of the state to find care in one of their homes. I have been a part-time resident in the panhandle of Idaho in the Spring/Summer months living with our son and his family. At least, we did up until DH started having the psychotic behavior this summer. If I can find placement in an Idaho home, I intend to immediately put our home in Washington on the market and buy a place close to him. I was told at the Boise home that the issue of residency won't be a deal-breaker. We'll see.

Paris20

Jmlarue, I send you my sympathy, my empathy, and my understanding in this very, very difficult situation. My husband, diagnosed with AD in 2015, had a paralyzing stroke four months ago. There was no way I could continue caring for him at home. My daughters worked diligently with me to find placement. He is in the so-called best place in town. His care is good although somewhat haphazard because of staff turnover. They are always short-handed. They had a Covid outbreak that was not handled properly in my opinion. Every resident caught it but they are OK now. 

My daughters tell me Dad is in the best of the worst. Most people cannot even begin to envision what navigating bureaucracies in the midst of dementia-care entails. So-called experts are not always knowledgeable or helpful. This horrible disease may well destroy what I foolishly thought was a comfortable retirement.

jmlarue

Paris - Thanks for your understanding. Our fellow travelers on this horrible dementia journey all know that the struggle is real.

Finding communal placement for our LOs, when we come to a place that we cannot provide adequate care all alone, is like searching for the Holy Grail. It all comes down to the issue of wealth. If I was in a position to self-pay $8-$12K a month for years of care, I know of several MC facilities that would be immediately available to him and acceptable to me. If one must rely on the government to cover that extraordinary cost of care, our options are something akin to finding the least run-down Motel 6 with a "Vacancy" sign.

We're quickly approaching 3 years living under the cloud of Covid. I wonder how many more years this will be used as the convenient excuse for lack of staff, lack of beds, run-down property, and isolating our LOs in the equivalent of a prison cell without bars? It really is an intolerable situation, and one we have absolutely no ability to change.

I remember a time when Doctors used to say, "Pneumonia is the old man's best friend." The meaning was clear - death is preferable to suffering the months and years being warehoused in a hospital or nursing home with a sick and broken body. Behind closed doors, I'll bet they say the same about Covid - but, only once the money runs out and leaves families with a trail of broken dreams.

Crushed

jmlarue wrote:

 

 

  If one must rely on the government to cover that extraordinary cost of care, our options are something akin to finding the least run-down Motel 6 with a "Vacancy" sign.

I live inside the Washington beltway  The sheer contempt bestowed on those who need government help for a devastating illness that is no ones fault is absolutely  incredible

 The photo is of me in a room with 8000 tons of chicken manure Ive been known to send it to government officials as a comment

jmlarue

Bless your heart, Crushed.

I heard the most incredible statement today from the Admissions Director of a VA Home in the wilds of Lewiston, ID that Melvina30 tipped me off to. I mentioned to her that my Uncle was a resident in the Boise home about a decade ago. They had the most wonderful Memory Care unit there. It was clean, well kept, comfortable, and the caregivers were attentive and compassionate. I told her that the Director of that home had said that all of the Idaho VA Homes were exclusively Skilled Nursing Facilities now. I asked her if she knew why that changed. She said, "We couldn't fill the beds." Seriously?

I think it's closer to the truth that they couldn't fill the beds with the "right kind" of dementia patients - the bed-bound and chemically restrained. They really put great store in the ones who are incapable of wandering or exit-seeking and, of course, the ones who can no longer put up a fight over pureed food or the indignity of having their diapers changed. It really is a contemptable attitude. Kindness and compassion is in short supply everywhere.

Crushed

jmlarue wrote:

I think it's closer to the truth that they couldn't fill the beds with the "right kind" of dementia patients - the bed-bound and chemically restrained. They really put great store in the ones who are incapable of wandering or exit-seeking and, of course, the ones who can no longer put up a fight over pureed food or the indignity of having their diapers changed. It really is a contemptable attitude. Kindness and compassion is in short supply everywhere.

My wonderful wife is in memory care.  she will eat what you put in her mouth and can shuffle down the corridor if you hold her hand That's it.  She has no concept of dignity  no desirres no recognition of the world except food and pain

She went into memory care a psychotic wanderer five years ago  her care costs 12,000 a month (high cost Montgomery county)  
 I could get the cost down to about 8,000 in Rural areas.  Medicaid pays 6000 a month 

 

ImMaggieMae

Crush. Is your wife on medications that cause her to be so restrained?

$12,000 wouldn’t be unusual in CA either for someone who needs to have everything done for them.

Chammer

@jmlarue  I have a family member who is active duty in the National Guard in KY.  She is a veterans advocate.  If you would like her contact info, message me and I can provide to you .