VA Benefits - Staring into the Abyss

jmlarue

Just to be clear, I'm posting this information as forewarning for others - not to ask for ideas or sympathy. At this point in the struggle to find help caring for my DH with vascular dementia and a side order of dangerous psychotic behavior, I am clinging to a ledge and staring into the abyss. The emotional and physical toll this is taking on my mental and physical health is frightening. Had I known, 4 years ago, that my DH's entitlement to VA Benefits would be near impossible to obtain, I wouldn't have wasted valuable time fighting a battle I could not win.

My forewarning is this - if you are the DPOA for a Veteran with a 100% service connected disability, DO NOT be lulled into a false sense of security thinking those benefits are your lifeline to long-term care for your veteran once you've burned out as a full-time caregiver. If you happen to live in a large metropolitan city, you MAY be able to take advantage of some limited in-home caregiving, perhaps, have access to an adult daycare, or access to a couple of weeks of respite care each year in a VA approved facility. But, don't ever expect that placement in a VA Soldiers Home is a real possibility. There are 4 in our State (Washington) and every one of them has a waiting list estimated to be 2 years long. If your Veteran requires care in a locked facility, you should also be aware that the small number of beds available for that care makes the wait even longer. Sometimes, sometimes, you may find a few community facilities contracted to accept payment from the VA. Again, they have few beds, long wait lists, and primarily located in metropolitan areas. If you wait until your LO declines to the point that you cannot provide adequate care, or you are emotionally and physically burned out as a caregiver, it's unlikely you will find placement in a facility before one or both you you dies. In retrospect, the only way I can see these VA placement options as viable is if I had made application to ALL of them when my DH was first diagnosed, not wait until he was Stage 6. No social worker mentioned this and I had no way of knowing it was the prudent approach.

Now, if you and your Veteran live in a suburban or rural area, many options are completely out of reach. There may only be ONE agency in a large region (distant from your home) contracted to provide in-home caregivers or respite care. There's probably no access to adult day care the doesn't require extensive travel. There may may be none at all that are approved for VA payment. The social workers will admit that you're entitled to the help but, again, the lack of providers, long wait lists, and lack of aides willing to travel long distance for a 4-hour gig, are all roadblocks to getting assistance. It is not possible to hire help yourself and expect reimbursement from the VA. You'll need to face everything with the stark realization that you are left with the same two options every DPOA faces - private pay or turning to your Area Agency on Aging or Medicaid for help. Both of those latter two options do have a policy of seeking recovery of their financial aid by attaching a lien to your home, payable when/if you need to sell that property. 

There are ways to protect your assets and qualify for this additional aid, but it absolutely requires the assistance of a Certified Elder Law Attorney. It may cost you $3,000 to $5,000 in legal fees and I know that can be a hard nut to crack if you just don't have the cash assets on hand. Take my advice - take out a loan, ask family to help, sell the gold fillings out of your teeth, if you have to - do everything you can do to find the money for solid legal advice. Don't wait for a diagnosis or delay until the disease progression hits you in the face. Do it early while your Veteran is still competent to sign the DPOA for healthcare and finances, agree to conditions of the Will, and fill out an Advance Directive for Healthcare. Ignorance of the law is no excuse for facing financial ruination or being locked out of the decision-making on healthcare for your LO. I repeat: Do whatever is necessary to get the money for solid legal advice to protect both your Veteran and you into the future.

I accept the blame for finding myself clinging to the ledge and staring into the abyss. I truly believed that my DH's VA benefits would be our safety net. I wasted two solid years tilting at the windmill before realizing that (somehow) I will need to find the resources on my own to provide for his continuing care in a MC or SNF to his end of days. Moreover, I need to figure out how to pay for it without leaving myself with no assets to provide for my own elder care in the future. I have our CELA working on the finances (for a second time) now that I know the VA support is not a viable option. I have had to switch my focus to getting the VA healthcare benefits brought to bear on the psychotic behavior that is a roadblock to getting him placed in a care facility. He's been rejected at 5, so far. It is entirely possible that he will need to be admitted to a VA Psych unit, once again, in hopes of getting his behavior stable, so that he isn't a pariah at every care facility I apply to. BTW - I've also discovered that there is only one way to involuntarily commit him to ANY psych unit in our state. A Superior Court Judge must order it and he will become a "ward" of the psych facility until discharge. My DPOA or Guardianship order does not allow me to commit him involuntarily. And, while the psych unit doctors and staff will claim that they will respect the legal right for me to direct my LO's treatment and care, the reality is that getting them to consult me in a timely manner rarely happens. More often, the consultation happens when things have gone completely sideways and then I'm asked to make decisions instantly that I may or may not be qualified to to do. It's a mess, but not a situation I can control.

Again, I post all of this simply to provide information based on my experience working through the maze of rules, regulations, and promises made, but not kept at the VA. Take it for what it's worth. Maybe, just maybe the VA staff where you live will have the resources to give you and not the solid roadblocks I have encountered. Even so, I would suggest that you proceed early on in this dementia journey with a "worst case scenario" in mind, i.e. what will I need to do if the VA cannot support me with in-home care or placement in a VA facility? Lastly, get that lawyer to have your back. Don't try to go it alone.

Gig Harbor

I am so so sorry that you are having to deal with this. I wish there was a way to medicate him into submissive behavior so that he could be accepted somewhere. I knew the VA facilities had wait lists but I thought his condition would allow him to move to the head of the line. It seems that they allow spouses of the VA patients to get beds in the nursing homes and then not be able to place the person who actually served. I truly hope something turns up soon for you or that he gets admitted to the hospital to give you a break.

Soul Mate

Jmlarue, so sorry this is happening to you.  I wish I had an answer.

 

 

I just recently joined this forum.  Your posts have been very informative and helped me greatly.  Sincere thanks and appreciation.

 

My husband is disabled vet suffering from type 1 diabetes for 52 years now.  Seven years ago he began to show signs of vascular dementia and is now about late stage 5.  He has severe retinopathy and last October was diagnosed with stage 4 kidney disease. 

 

Towards the end of June the VA social worker contacted me and told me to apply for secondary condition, which as you know would entitle him to full care.  Very shortly after my visit with the VSO (Veteran Service Officer), I received notice of two scheduled doctor appointments to verify the conditions.  The eye doctor’s body language indicated that she agreed with the diagnosis.  

 

The other doctor was very noncommittal and took blood and urine samples and asked a lot of questions.  We had to go to a second appointment during which they just took blood samples.  

 

Later we had an appointment with our regular GP.  After I told him about the VA tests he looked at the latest copy of his records from our kidney doctor and observed that my husband’s GFR had gotten better.  I’m guessing that’s why we had to have a second blood draw because the first one wasn’t showing significant kidney problem. On the one hand I am pleased that the special diet and drastically cutting back salt has improved the kidney condition.  On the other hand, disappointed that the promise of having financial assistance with memory or skilled nursing care is probably gone.  In a way, it helps to have a heads up that the VA promise of help with care could be a false one because I’ll be looking for alternatives.

 

Also appreciate the heads up and encouragement from everyone about getting a CELA.  I had an initial phone conversation and will be seeing him shortly.

 

Also much appreciation for everyone who has posted in this forum.  You guys are the best.  

M1

JM I am so, so sorry to read this.  Thanks for posting.  Holding you in my thoughts, wish there were more I could offer. 

Our systems are just broken from one end to the other.  And the bottom line, always, is that more people die than should have to.  I don't want you to be one of them. 

Joydean

JMLARUE, I know saying I’m so sorry doesn’t help. You have worked your butt off doing everything the VA has asked and fought for your husband and they still screwed up and left your dh out in the cold. It’s just so infuriating! When the chips are down we can’t depend on the VA, no matter what they say. 

There are a lot of us on here whose spouse is suffering, I thank you for sharing this with us! I can see/feel what this is doing to you, and it just breaks my heart for you. I pray things will turn for you. You definitely need some good news and a break! 

ImMaggieMae

jm I am so sorry you’re having to go through all of this. You’ve posted bits and pieces of this before, but I didn’t realize he was refused at 5 different facilities. You’re right, he will probably have to be admitted to a psych facility of some kind to figure out medications to calm him enough so he won’t be a danger to himself and others.