Edgar Family Care Plan

People typically live 4 to 7 years after an LBD diagnosis, though the range is wide in both directions and no one can predict an individual's path. What matters most day to day is comfort, safety, and good specialist care, and what matters most long-term is being prepared early, which is exactly what this plan is for. The later-stage sections lower on this page cover the harder decisions, for when they are needed and not before.

Most family doctors see very little LBD. A neurologist who knows it well makes a real difference, both for the right medications and for avoiding the wrong ones. The Cedar City hospital has a neurology clinic (435-868-5800), St. George has neurologists who see dementia regularly (435-251-1000), and the University of Utah's Cognitive Disorders Clinic in Salt Lake (801-585-7575) is the strongest option for a full workup; they offer telehealth.

The VA presumes anyone who served in Vietnam was exposed to Agent Orange, and it presumes parkinsonism (the movement part of Dad's condition) was caused by it. No proving, no arguing; it needs his service record showing Vietnam, his diagnosis, and a doctor's letter describing the movement symptoms.

1. File the intent to file (Form 21-0966): 10 minutes, free, locks in the date so back pay accrues.
2. Gather the DD-214 and a neurologist letter.
3. File the full claim (Form 21-526EZ) with a free accredited Veterans Service Officer. They do this every day.

Never pay anyone to help with a VA claim. Real help is free (numbers below); paid "benefit consultants" who call or advertise are a known scam.

• Monthly tax-free compensation for Dad.
• At a 70%+ rating: the VA caregiver program, which pays Mom a monthly stipend for the care she already gives, plus training and respite time.
• At a 70%+ rating: free care at Utah's veterans homes, including the one in Ivins, about 40 minutes away, with a dedicated memory care wing.
• Aid and Attendance add-ons as his needs grow.
• For Mom, later: if his passing is tied to the service-connected condition, she receives about $1,700 a month, tax-free, for life, on top of any Survivor Benefit Plan payments.

Enrolling (877-222-8387) does not change his TRICARE or Medicare; it adds services they do not have: home health aides, a medical team that can visit the house, adult day care where available, and up to 30 days a year of respite care so Mom can rest. The nearest VA clinic is in St. George; Salt Lake City has the main VA hospital.

Utah runs veterans homes with memory care, and spouses of veterans are eligible too. The closest is the Southern Utah Veterans Home in Ivins (435-634-5220), with a 24-bed memory care wing. At a 70%+ rating Dad's care there is fully paid. Touring early and getting on the list costs nothing and commits us to nothing.

Dad is entitled to full military funeral honors, a national or state veterans cemetery (Bluffdale: 801-254-9036), headstone, and flag, at no cost. Filing the pre-need form (40-10007, or call 800-535-1117) now means none of it has to be figured out during a hard week.

• Health care directive: names Mom (plus a backup) to make medical decisions and records his wishes. Utah's official form is free (ucoa.utah.edu); it needs one witness who is not family.
• Durable power of attorney: lets Mom handle finances, the pension, and taxes when Dad no longer can. Copies go to DFAS and the banks now, so they are pre-cleared.
• HIPAA releases: so Mom and a designated sibling can always talk with his doctors.
• Will and beneficiary check: confirm Mom is the named beneficiary on insurance and accounts, and how the house is titled.

An elder law attorney can do the whole package in one or two visits, around $300 to $600. If we wait until Dad cannot sign, the alternative is a court guardianship: months, thousands of dollars, and yearly court reporting for Mom. One quirk worth knowing: Social Security ignores POAs, so if Mom ever needs to manage his Social Security she applies separately as his "representative payee" (ssa.gov/payee).

Our order of operations: VA benefits first (not tied to income if service-connected), the veterans home second (free at 70%+), Medicaid only if ever needed. And if Medicaid is ever needed, federal rules protect Mom: she keeps the house, roughly half the savings (up to about $163,000), and a guaranteed monthly income before anything goes to care costs. One caution until an attorney says otherwise: no large gifts or transfers out of their names; Medicaid reviews five years of history and penalizes them. Transfers between Mom and Dad are fine.

People with dementia are heavily targeted, and it is nobody's fault when a scam lands. The protections: credit freezes at the three bureaus (on the to-do list), Mom or a sibling glancing at statements monthly, "trusted contact" added at each bank, and moving Dad gently away from solo control of accounts as judgment fades. Any unsolicited call about VA benefits, computer problems, or a grandchild in trouble is a scam. If one ever lands: call the bank, file a police report, and report at ic3.gov, in that order.

• Area Agency on Aging (caregiver funds, case management): 435-673-3548
• Cedar City Senior Center and Meals on Wheels: 435-586-0832
• Cedar City Hospital (ER, neurology clinic): 435-868-5800
• St. George neurologists (see dementia regularly): 435-251-1000
• Home care with dementia training: Visiting Angels 435-657-0888; also Intermountain Homecare, Senior Helpers, Zion's Way
• Memory care to tour: Our House 435-867-0055, Brookdale 435-200-1132, BeeHive Homes 435-867-1565, and the veterans home in Ivins 435-634-5220

• University of Utah Cognitive Disorders Clinic (best-in-state workup, telehealth): 801-585-7575
• Utah Aging Services (free dementia care consultations): 877-424-4640
• 211 Utah (dial 211) for anything not listed here
• The ward: Relief Society and elders quorum will help with meals, visits, and sitting with Dad. Making sure they know what is going on, and what actually helps, is worth one conversation.

Let the neurologist deliver the medical call so it is not a family fight, and ask for an occupational therapy driving evaluation as the neutral referee. Ease it down in stages (daylight and local first), and have his rides already scheduled by us so losing the keys does not mean losing his life outside the house.

With hallucinations and confusion in the picture, firearms need to live somewhere else. The framing that keeps his dignity: they are still his, we are storing them safely. Options: transfer to one of us, a range locker, or police safekeeping. Doing it early and together beats doing it after a scare.

If Dad kicks, shouts, or swings in his sleep, he is acting out dreams, a common LBD symptom he will not remember. Until it is treated (it usually responds well to melatonin, sometimes with one other medication), Mom should sleep out of arm's reach. Separate beds for a while is a medical precaution and nothing more, and she may need to hear that from us.

Exhaustion that sleep does not fix, snapping at Dad and then feeling awful, dropping friends, skipping her own doctor, "I'm fine" on repeat. Any of those means we add support now. If she ever sounds hopeless, that is a same-day call to her and to each other.

• Lewy body families' support line: 800-539-9767. Staffed by people who know this exact road, and they run online spouse groups.
• 24/7 dementia helpline: 800-272-3900, any hour, including mid-crisis.
• Grieving someone who is still here is real grief. A counselor who knows dementia, plus a support group, is the combination that helps most; the Area Agency on Aging (435-673-3548) can point to both.

• The legal documents and beneficiary check from Paperwork and money.
• A letter of instruction in Dad's own words: where everything is, what he wants for his funeral, who gets what keepsakes. A few good-day conversations, written down.
• Funeral wishes settled: the pre-need VA form plus his letter. Honors, cemetery, all of it decided ahead of time.
• The family binder: one place with accounts, policies, deeds, passwords, and copies of everything signed.
• Confirm the Survivor Benefit Plan with DFAS now. Whether Dad elected it at retirement is the single biggest factor in Mom's future income.
• His website and digital accounts: logins documented, a backup taken, renewals on autopay.

Her TRICARE For Life continues alongside her Medicare as his surviving spouse, the house stays hers, and the veterans homes remain open to her as a veteran's spouse if she ever wants that option.

When the time comes, one designated sibling runs this list so Mom does not have to:

1. The funeral home coordinates military honors (they need the DD-214 and 48 to 72 hours notice) and notifies Social Security.
2. Order 10 to 12 certified death certificates through the funeral home.
3. Call DFAS (800-321-1080): report, claim the final month, start the SBP annuity.
4. Call the VA (800-827-1000) with the VSO: survivor benefit, burial allowance, memorial certificate.
5. Call Social Security (800-772-1213) for her survivor benefit.
6. File insurance claims and transfer accounts per the binder; the attorney handles anything that needs court.

If Dad is on hospice at the end, their bereavement team supports Mom for 13 months at no cost. The family rotation keeps going for her, especially through the first year and the first holidays.