Edgar Family Care Plan

1. Have ready: Dad's Social Security number, date of birth, and address.
2. Call the VA at 800-827-1000 (weekdays; mid-morning midweek has the shortest waits). Say: "I'd like to record an intent to file for disability compensation for my father." Have Dad nearby to give his okay if they ask for him.
3. Prefer online? Sign in at va.gov as Dad (Login.gov or ID.me) and start the disability application; saving it records the same protected date.
4. Write down the confirmation number and date. Binder, plus a note on this page.

Why this is task one: every month between this date and approval becomes back pay at the awarded rate. Filing it before the claim is ready costs nothing and loses nothing.

1. Check the house first: Dad's files, the safe, wherever the military papers live. Ask Dad on a good morning; he may know exactly.
2. Check the Iron County Recorder's office; many veterans recorded their DD-214 there after retiring.
3. Not found? Request it free at vetrecs.archives.gov (the National Archives) or milconnect.dmdc.osd.mil. Dad signs the request.
4. While requesting, ask for his full personnel file too; it documents the Vietnam locations and strengthens the claim.
5. Scan into the binder and keep two paper copies; the VA, DFAS, and funeral honors all ask for it.

Done when: a copy is in the binder and every sibling knows where.

1. Call 801-326-2372 and say: "My father is a Vietnam veteran in Enoch with Lewy body dementia. We want help filing an Agent Orange presumptive claim for parkinsonism. Which service officer covers Iron County?"
2. Book the soonest slot; ask about video if travel is hard. Long wait? DAV (801-326-2375) and the American Legion (801-326-2380) file claims too; any accredited officer works.
3. Bring: DD-214 (or note it's on order), the diagnosis paperwork, his medication list, both parents' IDs, and the marriage certificate.
4. Ask three things at the appointment: file the parkinsonism claim as an Agent Orange presumptive; exactly what the neurologist's letter should say; and when to add Aid and Attendance.

Rule of thumb: this help is always free. Anyone charging money to "get VA benefits" is running a scam.

1. Download and print several cards from lbda.org/lbd-medical-alert-wallet-card. Laminate, or tape to cardstock.
2. One in Dad's wallet, one in Mom's purse, one in each glovebox.
3. Type the one-page ER sheet using the outline in the medication rule section: big font, the warning in bold at the top.
4. Put a photo of the finished sheet in the group chat so it lives on every phone.

Done when: Mom can hand the sheet to a paramedic without searching for it.

1. Get two or three names: naela.org's find-a-lawyer for Utah, plus ask the Area Agency on Aging (435-673-3548) which firms Iron County families use. St. George has several.
2. Call each and ask: flat fee for power of attorney + health directive + HIPAA + will review? Do they handle Medicaid planning and veterans? Video or a house call to Enoch?
3. Book a morning; mornings are usually Dad's best hours.
4. Before the visit, pull together the deed, an account list, and any existing will or POA.

Tell them about the LBD swings. Good elder law attorneys schedule signing flexibly and note his clear capacity that day, which protects the documents from ever being questioned.

1. Put every bottle in the house in one bag: prescriptions, vitamins, sleep aids, allergy and cold medicine.
2. Take it to his pharmacy: "Please review these for a Lewy body dementia patient, flagging anticholinergics and antipsychotics." Ask if Medicare covers a full review; many plans do annually.
3. Get a printed list of what he takes and what got flagged; send it to his doctor and update the ER sheet to match.

Watch for on labels: diphenhydramine (Benadryl, ZzzQuil, anything "PM") and oxybutynin. Both are on the avoid list.

1. Have Dad's Social Security number, date of birth, and address.
2. Freeze at all three, about 20 minutes each: Equifax 800-685-1111 (equifax.com), Experian 888-397-3742 (experian.com/freeze), TransUnion 888-909-8872 (transunion.com/credit-freeze).
3. Save the PINs and logins in the family password store.
4. Do Mom's three freezes too while everything is out.

Nothing about daily life changes: a freeze blocks new accounts, not their existing cards, and lifting one later takes minutes.

1. Mom calls DFAS at 800-321-1080 with Dad nearby (they may want his okay). Have his Social Security number.
2. Ask in order: Is Survivor Benefit Plan coverage in place, and at what base amount? Can they mail a current Retiree Account Statement? What power of attorney format does DFAS accept, so the attorney drafts to match?
3. Set up or reset his myPay online account during the call and store the login.

Why it matters: whether SBP was elected at retirement is the single biggest factor in Mom's income later, and we want the answer in writing this month.

1. Confirm the pieces: the DD-214 showing Vietnam service, and a neurologist letter naming the parkinsonian symptoms in his Lewy body dementia (slowness, stiffness, tremor, walking changes). The VSO will say exactly what wording they want.
2. The VSO files Form 21-526EZ, listing parkinsonism as presumptive from herbicide exposure. Keep copies of everything submitted.
3. The VA will schedule an exam (a "C&P exam"). A sibling takes Dad, bringing the med list and a one-page symptom summary. Describe his worst days, not his best; LBD fluctuates and the examiner sees one hour.
4. Track status on va.gov or through the VSO. Months is normal, and back pay runs from the intent-to-file date, so slow is still paid.

If it comes back denied or rated low: that is common and very appealable. Ask the VSO for a higher-level review or supplemental claim; many Agent Orange claims win on the second pass.

1. Apply by phone at 877-222-8387 or at va.gov/health-care/apply, with the DD-214 handy.
2. Once enrolled, book at the St. George VA clinic, tell them the diagnosis, and ask for a Geriatrics and Extended Care referral by name: "Home Based Primary Care, home health aide hours, and respite care."
3. Ask whether Veteran-Directed Care operates locally; it gives the family a budget to hire help directly.

Nothing is lost by enrolling: VA care stacks with TRICARE and Medicare, and the respite alone (up to 30 days a year) is worth the paperwork.

1. Have his current doctor fax a referral to the University of Utah Cognitive Disorders Clinic (fax 801-585-2746), then call 801-585-7575 to confirm it arrived and take the first opening, including telehealth.
2. Use Cedar City neurology (435-868-5800) for nearer routine care between specialist visits.
3. Bring to the first visit: the med list and a short timeline of when the memory changes, hallucinations, sleep thrashing, and falls each started.
4. Ask for: a medication plan, a copy of the visit note for the VA claim, and the parkinsonism letter the VSO requested.

Bring video. Short, respectful phone clips of the concerning moments show the specialist what a clinic hour hides.

1. Schedule the signing for a morning and keep it movable in case a better day is needed.
2. Sign: durable financial power of attorney, Utah advance health care directive (one witness who is not family or an heir), HIPAA releases, and any will updates.
3. The same week, send copies to DFAS, each bank, and his doctors. Scan everything into the binder.

Done when: every institution has confirmed the POA is on file, not just received it. Banks are the usual stragglers; call and check.

1. Call 435-673-3548: "My mother cares for my father with dementia in Enoch. We'd like to enroll in the caregiver support program and ask about respite help and the Aging Waiver."
2. Ask for all four: the caregiver program (up to $1,500 a year), a case manager, Meals on Wheels if they'd use it, and the Medicaid Aging Waiver screening. The waitlist rewards early names.
3. Write the case manager's name and number in a note on this page.

This office is the local hub. When in doubt about anything local, ask them first, politely and repeatedly.

1. Walk the house room by room: remove or tape rugs, clear cords from walk paths, tighten stair rails, add grab bars and a non-slip mat in the bathroom, nightlights along the bed-to-bathroom route, motion lights at stairs.
2. Ask his doctor to order an occupational therapy home evaluation; Medicare usually covers it, and the OT's list becomes the shopping list.
3. Visiting siblings are the installation crew. Receipts in the binder.

The goal is beating the first bad fall, not reacting to it. Falls are the main physical risk in LBD.

1. The one or two of us Dad trusts most raise it privately and simply: "We're going to store these safely. They're still yours."
2. Pick what fits: transfer to a son or daughter, a range locker, or police safekeeping.
3. Do it the same week it's agreed; ammunition stored separately in the meantime.

If he resists, let his doctor make it medical advice at the next visit instead of a family argument. The free guide at sites.wustl.edu/sid helps think the options through.

1. Ask the neurologist to own the driving conversation at the next visit, so the message is medical, not personal.
2. Request an occupational therapy driving evaluation as the neutral test; the doctor refers.
3. Meanwhile, narrow gently: daylight only, local only, someone riding along.
4. Build the ride schedule now, so his errands and church don't disappear with the keys. If he drives against medical advice, manage the keys and car quietly.

No sibling plays enforcer. The doctor delivers the verdict; we deliver the rides.

1. Complete VA Form 40-10007 at va.gov/burials-memorials/pre-need-eligibility, attaching the DD-214, or call 800-535-1117 for help.
2. Talk with Dad and Mom about preference: the Utah Veterans Cemetery in Bluffdale (801-254-9036), or a Cedar City cemetery with military honors brought to it. The answer goes in his letter of instruction.
3. File the VA approval letter in the binder when it arrives.

1. Sit with Dad at his computer and log into the website admin, the hosting account, and the domain registrar. Record each login in the password store.
2. Take a full backup (the host's backup tool plus an export of the site content) and save it in two places.
3. Move the domain and hosting onto autopay with a family card; set renewal reminders a month early. Same pass for his email and photos.

Done when: the site could be restored from our backup even if the host vanished tomorrow.

1. Two or three short sessions, one topic each: where things are; what he wants for his funeral; keepsakes and words for people.
2. Write it plainly, read it back to him, and have him sign and date it. It is not a legal document and does not need to be.
3. Original in the binder; Mom knows where.

If he's comfortable, record the conversations. The recordings themselves will matter someday.

1. One big three-ring binder with tabs: Identity and military, Medical, VA, Money, Legal, House, Passwords, Contacts.
2. Fill it with what exists today; every completed task on this page feeds it.
3. Scan the contents into a private shared folder for the ten of us, and keep both current.

Done when: any "where is...?" question has the same answer: the binder.

1. One sibling owns a shared calendar for Mom and Dad.
2. Build the recurring grid: a daily check-in call that rotates weekly, weekly in-person visits from whoever is local, at least one overnight a month, and out-of-towners covering video calls and funded help.
3. Review it at the monthly family call and whenever Mom's load changes.

Scheduled beats offered. "Call if you need anything" produces silence; a calendar produces rest.

1. Call the Ivins veterans home (435-634-5220): ask for a tour, the current waitlist, and what paperwork opens a file (the DD-214 again).
2. Tour two local memory care options: Our House (435-867-0055) and Brookdale (435-200-1132).
3. Ask each the same four questions: night staffing ratio; Lewy body experience specifically, not just "dementia"; how they handle hallucinations without antipsychotics; base cost and what raises it.
4. Impressions go in the notes on this page while they're fresh.

1. When the rating letter arrives at 70% or higher, Mom applies at caregiver.va.gov or by calling 855-260-3274. The application is joint, her and Dad.
2. Expect a home assessment and short training; then the monthly stipend begins, plus respite hours through the program.
3. If it's denied at first, appeal with more detail about the daily hands-on care; second applications succeed often.

This is the single biggest ongoing support for Mom: real monthly money for care she already gives.

1. At any regular visit, say: "We'd like a palliative care referral, for symptom management and family support alongside his current care."
2. Intermountain runs palliative teams reachable from Cedar City; the clinic routes it.
3. They help with comfort, medication balance, and, much later, the timing of hospice. Accepting them early changes nothing else about his care.

1. When his doctor agrees the time is right (usually mid-to-late stage), complete the order together with the physician; the form is at ucoa.utah.edu.
2. Copies go on the fridge (where EMS looks), in the binder, and noted on the ER sheet.

Unlike the directive, this is a medical order: EMS and hospitals follow it directly, which is exactly its point.

1. Watch for the triggers: coughing or throat-clearing at meals, a wet-sounding voice after drinking, food held in his cheeks, weight loss.
2. At the first sign, ask his doctor for a speech-language pathology swallowing evaluation; Cedar City Hospital performs these.
3. Follow the food-texture guidance, and add thorough tooth-brushing twice a day; a clean mouth sharply cuts pneumonia risk.

Why this one is non-negotiable: swallowing trouble leading to pneumonia is the most common serious complication in late LBD. Acting on the first sign is how families stay ahead of it.