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.

(Cross-posted on the Spouse and Partner board)

SusanB-dil

oh wow, jmlarue - so sorry you are dealing with all that.  ((hugs))

Rescue mom

I am so, so sorry you must deal with all this. The VA care issue —or non-care, now—is a nightmare made worse, IMO, because it’s our veterans, AND so many promises to them are broken.

 If a private company reneged on contracts like that…..The way VA treats our veterans now is criminal. (Surely there are some good ones, but they seem extremely rare now).  Nor is this unknown, there’s been news, documentaries, etc. in the last few years. Yet little seems to improve. If anything, budgets are cut.

I have several veterans in my family now, and decades ago from WW2. The VA now, vs. the VA of 30-40 years ago, is a very different animal. I feel deeply sorry for anyone who depends on them now. Back decades ago, they were fine. That was then. 

Sorry to go off, I was just this morning talking to fam in tears over her battles with the VA for her vet spouse. Getting approved is hard enough, but then you find no services available. I honestly expect he will die before VA helps, and/or if she waits on VA to provide timely help. She’s been told to forget VA and go elsewhere, but they’re well down the road. And money.

Pathfinder52

Just to add a few words of clarification --

The FEDERAL Government runs the VA healthcare system -- for acute & ambulatory care.

Your STATE Government runs the long-term care system for veterans (in my state, the MDVA or Minnesota Department of Veterans Affairs, an agency which has 5 facilities and is building three more).

To confuse the two is to misunderstand where the resources come from and how they are allocated.

--p

jmlarue

I would characterize the connection between the Federal VA and the individual State-run VA homes as a "pass through" program similar to Medicaid. A good deal of the funding does come from the Federal government in the form of grants to pay for construction on these care facilities. The Federal VA also pays a per diem (daily) amount of money for each veteran housed and cared for in these facilities. Lastly, the Federal VA provides money to States for the training and retention of nurses. So, while State VA services are not entirely funded by the federal VA agency, it definitely provides a significant amount of funding for State administered services. I think it's a misconception to think that these two entities work completely independently from one another. It's a fundamental truth that any time the Federal government provides taxpayer money to the States, it comes with strings attached and oversight by the Federal government.

dayn2nite2

I have no personal experience with the VA or its benefits, but from the years of reading the experiences of others, the only thing that ever jumped out at me is they make things so difficult/impossible that they are hoping the veteran dies before they can access anything other than basic health care.