New/old member back again

Belle .. my DH may be somewhat similar to yours. His diagnosis is Major Neurocognitive Disorder, thought to be a long term downstream result of chemo and whole brain radiation done in his early 40s to treat a malignant brain tumor. His brain scans show diffuse white matter disease. He is now 65, so like you, I’ve been on the caregiver path for many years.

The cognitive dysfunction showed up first, resulting in his inability to maintain a job. He stopped driving in his 50s. Luckily I’ve always managed our finances so no need for changes there. Beginning in 2014 he began having neurological symptoms, specifically difficulties with gait and balance. This ramped up in the past three years, with increasingly frequent falls. At this point he uses a wheelchair at all times, with a Hoyer Lift for transfers. That might sound bad but in reality it’s not that difficult and is keeping him safe.

One of my frustrations is the lack of information about his specific condition. Cognitively he has some similarities to dementia, so I do look at the dementia stages to get an idea of where things are and what might be happening next. But the neurological aspect and its progression is less defined, which leaves me wondering about the future.

Belle, so sorry you are going through this after already going through it with another family member. I was approved for VA Caregiver Support. I filled out the form online and they called and we were approved in a few months. Did you file the claim and were denied? The key to filing claims with the VA is to give complete info about behavior. So make a note about everything your DH can't do with assistance. Shower, eat, pay bills, grocery shop, drive, etc. That's how they determine what support you need. There are different tiers of Caregiver Support at the VA. I'm in the middle tier with 720 hours respite care and Caregiver stipend. When my DH needs more care, they will increase the support or help with a MC facility. There is also a Catastrophic Disability category. Based on a VA clinical decision, Veterans are considered to be Catastrophically Disabled when they have a severely disabling injury, disorder or disease that permanently compromises their ability to carry out the activities of daily living.

4 things you can try: 1. Every veteran is assigned a Social Worker at their VA facility. Find out who that is and call them. 2. Call the Patient Advocate. 3. Find your County Veteran Service Office (VSO) who is paid by the County and ask for their help. 4. See if you can find the Caregiver Support phone number at your VA facility and call them if you haven't been in touch with them already. Please keep us posted.

Welcome back, Belle—and I’m so sorry you’re in a place where you have to be back. You’ve carried so much for so long, and the fact that you’re still showing up for your DH with this much care says a lot about your strength—even if you feel completely worn down (which is more than valid).

It sounds like you’re doing everything right—getting a geriatric case manager involved, pursuing VA benefits, and trying to plan ahead. The fact that he’s in his 50s makes this even more isolating, since most dementia resources skew toward older adults.

As for the VA—ugh, yes. They can be incredibly difficult to deal with, even when you're clearly entitled to benefits like Aid & Attendance and respite. If he’s rated 100% P&T and needs help with ADLs like eating, bathing, and supervision, he should qualify. A few ideas that might help:

Ask your case manager or social worker to submit a VA Form 10-10CG (for the Program of Comprehensive Assistance for Family Caregivers). It’s underutilized, especially for younger vets with neurocognitive issues.

Request a VA Home & Community-Based Services consult, even if they’ve denied palliative. Sometimes they’re more willing to approve homemaker/home health aide services as a starting point.

Appeal any denials in writing—and don’t hesitate to get help from an advocate. Some people have had success using a tool like Counterforce Health to write appeal letters and structure documentation. It’s free and walks you through the process.

Reach out to your state’s Veteran Services Officer (VSO)—they often have more leverage than national helplines and can push claims forward.

And please don’t underestimate how draining this all is. Managing care 24/7 for someone with cognitive decline is its own form of grief. You deserve help, even if you have to fight for every inch of it. I’m really glad you posted—you’re not alone in this.