End-of-Life Dementia Home Care in West Orange NJ · When Hospice Visits a Few Hours and You Need All of Them
The hospice nurse comes Tuesday morning for forty minutes. The hospice aide comes Wednesday and Friday for an hour each. The chaplain comes once a week. That is roughly four hours of hospice presence in a seven-day week. The other 164 hours belong to the family and to whoever the family hires to sit at the bedside. In West Orange, in that gap between hospice visits, the private-pay 24-hour caregiver is the one who turns your mother every two hours, swabs her mouth with cool water, plays the Frank Sinatra record she loved when the two of you lived on Pleasant Valley Way in the 1970s, and calls Sofia at 2 a.m. when the breathing pattern changes.
Table of Contents
- What end-of-life dementia looks like at home in West Orange
- FAST stage 7c · non-verbal, non-ambulatory, dysphagia
- Hospice and 24-hour home care · what each one does and does not do
- The handoff from Mountainside or Daughters of Israel to home-plus-hospice
- Comfort care · positioning, mouth care, hydration, music, dignity
- Non-verbal pain assessment at the bedside
- The two-caregiver turn and skin integrity in the final weeks
- The family vigil · how a 24-hour CHHA holds space without being in the way
- A West Orange week in end-of-life home care
- Private pay path · short runway, concrete numbers
- Frequently asked questions
What end-of-life dementia looks like at home in West Orange
According to 24 Hour Home Care NJ, the families we meet in West Orange during the final chapter of dementia arrive at the same place by different roads. One family comes to us straight from Mountainside Medical Center after a hospitalization for aspiration pneumonia. Another family comes to us after a six-month stay at Daughters of Israel on Pleasant Valley Way, because the daughter said at the care conference, “I promised my father on his birthday that she would die in the house they bought in 1967.” A third family comes to us from Green Hill, where the resident has slipped into stage 7c of the FAST scale and the facility recommends a one-to-one companion.
End-of-life dementia at home does not look like what television shows. The last six to twelve weeks of advanced dementia usually look like this. Your mother is in a hospital bed in the living room on Northfield Avenue because the bedroom upstairs is no longer reachable. She has not spoken a complete sentence in four months. She sleeps eighteen to twenty hours a day. She cannot swallow a cracker without choking. She has lost twenty pounds since Thanksgiving. Her hands are curled into a flexion contracture. She still smiles when the caregiver sings You Are My Sunshine, and the family holds onto that smile.
This is the stage that 24 Hour Home Care NJ supports in West Orange with a two-layer care plan. Hospice is one layer. The private-pay 24-hour certified home health aide is the other layer. The two layers do not compete. They complete each other.
The 07052 and 07043 context
West Orange zip codes 07052 and 07043 sit inside the Essex County hospice network. There are roughly a dozen Medicare-certified hospice agencies that cover the township. We do not refer to specific hospices because the family’s hospital social worker, Mountainside case manager, or Daughters of Israel discharge planner is the right person to walk the family through the choice. What we do is build the private-pay layer around whichever hospice the family selects.
Why West Orange families keep the loved one at home
Three reasons repeat in our case notes. First, the house is the last place the person recognized before the recognition slipped. Second, the family has already said yes to a long year of care at home and does not want the final weeks to happen in a strange room. Third, the research supports it. According to the National Institute on Aging guidance on providing comfort at the end of life for people with dementia, the quietest, most familiar environment produces the fewest episodes of distress in a non-verbal patient.

Caption: Sofia Elmer sitting with a West Orange family during the hospice-plus-private-pay care conversation at the kitchen table. Photo credit: 24 Hour Home Care NJ.
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FAST stage 7c · non-verbal, non-ambulatory, dysphagia
The Functional Assessment Staging Tool, called the FAST scale, is the clinical shorthand that hospice and home-care clinicians use together to describe where the patient is in the dementia trajectory. The scale runs from stage 1 (no cognitive decline) to stage 7f (end stage, unable to hold head up). Stage 7c is the specific sub-stage where hospice eligibility for a dementia diagnosis is typically met, when combined with one or more comorbidities such as aspiration pneumonia, urinary tract infection with sepsis, pressure injury stage 3 or 4, or significant weight loss. The ICD-10 code is F03.90, unspecified dementia without behavioral disturbance, when the dementia is the primary terminal diagnosis.
What FAST 7c looks like in the living room
Non-verbal means the person speaks six words or fewer per day. Non-ambulatory means the person cannot bear weight, cannot pivot, and spends twenty-four hours in the hospital bed or a reclining geri-chair. Dysphagia means swallowing is unsafe. Thin liquids trigger coughing. Solid foods pocket in the cheeks. Pudding-thick textures work for a while, then stop working. The speech-language pathologist from the hospital or hospice makes the final call on diet modification, and the home care plan carries that recommendation to every shift.
The three signs the caregiver watches for at FAST 7c
- A change in breathing pattern. Cheyne-Stokes respirations, where breathing is deep then shallow then paused for ten to thirty seconds, are a late-stage sign. The caregiver documents the pattern and calls the hospice on-call line.
- Mottling of the knees and feet. A purple lace pattern on the lower extremities, called livedo reticularis, is a circulatory sign in the last days.
- Terminal secretions. The gurgling sound that families call the “death rattle” is pooling of saliva in the back of the throat. Positioning changes and a scopolamine patch from hospice reduce it. The caregiver repositions and calls the nurse.
According to 24 Hour Home Care NJ, the certified home health aides on our team are trained to recognize these three signs, document them with timestamp in the daily log, and escalate to the hospice RN immediately. The private-pay caregiver is not the clinical decision maker. The caregiver is the eyes in the room when hospice is not in the room. For a longer discussion of the dementia trajectory we point families to the neuroscience-based dementia care approach we use across the Essex County service area.
Hospice and 24-hour home care · what each one does and does not do
Families call the Sofia Elmer line at (908) 912-6342 and the first question is almost always some version of the same thing. “The hospice social worker told us to look into home care. We thought hospice was home care. What is the difference?” The difference is important enough that we draw it out on a napkin at the first kitchen-table conversation.
What hospice does
Hospice is a Medicare-covered benefit for patients with a terminal diagnosis and a prognosis of six months or less. Hospice sends a team into the home: an RN (one to three visits per week, 30 to 60 minutes each), a hospice aide for bathing (one to three visits per week, roughly one hour), a social worker, a chaplain, and a medical director. Hospice provides the hospital bed, oxygen, comfort medications, briefs, barrier cream, pressure-reducing mattress, and medical equipment. Hospice has a 24-hour on-call RN for crisis visits. According to the Alzheimer’s Association end-of-life care guidance, hospice is the gold standard for the last chapter of dementia.
What hospice does not do
Hospice does not sit at the bedside. Hospice does not turn your mother every two hours around the clock. Hospice does not swab her mouth with glycerin sponges every twenty minutes when terminal secretions begin. Hospice does not sing the Frank Sinatra song at 11 p.m. when she becomes restless. Hospice does not call the daughter in Short Hills at 2 a.m. and say “it is time to come.” The hospice benefit is a visiting benefit, not a staffing benefit.
What 24-hour private-pay home care does
The private-pay 24-hour certified home health aide covers the gap. Three eight-hour shifts per day. The same caregiver on the schedule the family depends on, Monday Wednesday Friday 94 percent of the time, with every substitution named in the Friday family email. The CHHA bathes, turns, repositions, feeds (when swallowing is still safe), gives mouth care, changes briefs, logs every intake and output, and calls hospice when a change happens. According to 24 Hour Home Care NJ, this layer is what lets a West Orange family keep the final chapter at home.
For a side-by-side comparison, this is the matrix we leave with the family on the first visit:
| Element | Hospice (Medicare-covered) | Private-pay 24-hour home care |
|---|---|---|
| Who pays | Medicare, private insurance, or VA hospice benefit | Family funds, long-term care insurance, VA Aid and Attendance |
| Hours per week in the home | 4 to 8 hours total across all visits | 168 hours (continuous) |
| Clinical role | RN assessment, symptom orders, medications, equipment | CHHA bedside care under RN-written plan of care |
| Overnight presence | On-call phone and crisis visits | Awake overnight CHHA at the bedside |
| Turns and repositioning | Trains family or aide on visits | Every 2 hours around the clock, documented |
| Mouth care | Teaches technique | Every 15 to 30 minutes during active dying |
| Medications | Orders and manages comfort kit | CHHA cannot administer meds, family or hospice RN does |
| Family coaching | Social worker and chaplain | Daily rhythm, bedside presence coaching, respite |
| Primary advantage | Clinical oversight at zero out-of-pocket | Continuous presence that lets the family breathe |
Hospice is Medicare-covered for the hospice benefit itself. 24 Hour Home Care NJ is not the hospice. We are the private-pay 24-hour companion and CHHA layer that sits alongside hospice. We do not bill Medicare and we do not advertise ourselves as a Medicare benefit. The private pay side is funded by family resources, long-term care insurance from carriers like John Hancock, Genworth, MetLife, or AARP long-term care policies, or VA Aid and Attendance pension where the family qualifies.
The handoff from Mountainside or Daughters of Israel to home-plus-hospice
Three handoff patterns repeat in West Orange. Each one has a particular rhythm, and we build the care plan around whichever one applies.
Pattern one · hospital discharge from Mountainside
Your mother is admitted to Mountainside Medical Center on Bay Avenue with aspiration pneumonia. The hospitalist tells the family that aspiration will keep happening and antibiotics will keep failing. The palliative care consult team meets with the family. The family elects hospice. The hospital social worker arranges hospice intake, often same-day, and asks about home support. The family calls 24 Hour Home Care NJ. We arrive at the house before discharge, meet the family at the kitchen table, write the one-page care plan the family reads first, assign the primary CHHA for day and night, and are at the bedside when the medical transport unloads in the living room on Friday afternoon.
Pattern two · subacute discharge from Daughters of Israel
Your father has been at Daughters of Israel on Pleasant Valley Way for six months. The family care conference flags that he is now bed-bound and non-verbal, aspiration risk is high, and the family wants to bring him home. The DOI social worker helps arrange hospice. The family calls Sofia at (908) 912-6342. We walk through the care plan with the DOI RN, carry the same bowel protocol, the same positioning schedule, the same preferred music, the same morning routine written out by name. Our Daughters of Israel dementia home care page walks through the facility-to-home handoff.
Pattern three · home-to-home step-up
Your mother has been at home all along with daytime help only, and the dementia has progressed through FAST 6 into FAST 7. She stopped recognizing her son last week. She stopped eating solid food this week. The primary care doctor at Saint Barnabas or Mountainside recommends a hospice evaluation. The family asks us to step the schedule up from twelve hours a day to twenty-four. We add the overnight shift, add the second day caregiver on weekends, and coordinate with the hospice intake nurse the same week. Our Alzheimer’s stage-specific support page describes the step-up pattern.

Caption: The handoff from Mountainside Medical Center or Daughters of Israel to home-plus-hospice in West Orange, coordinated by Sofia Elmer with the hospice intake nurse at the kitchen table.
Comfort care · positioning, mouth care, hydration, music, dignity
Comfort care is the clinical name for the daily rhythm in end-of-life dementia. According to 24 Hour Home Care NJ, five domains run through every care plan we write for a West Orange family in the final chapter. The caregiver carries the plan on a one-page sheet taped to the inside of the kitchen cabinet, the hospice RN co-signs the sheet, and the family reads the sheet first before any new visitor enters the room.
Positioning
Every two hours, around the clock, the caregiver repositions the patient. Right side, back, left side, back. A pillow between the knees, behind the back, under the heel to float it off the mattress. The pressure-reducing mattress hospice supplies does most of the work. The two-hour turn finishes it. Every turn is logged with timestamp.
Mouth care
When oral intake slows and then stops, mouth care becomes the single most important comfort measure. The mouth dries out. Lips crack. The tongue gets coated. The caregiver uses glycerin swabs or soft foam toothettes every twenty to thirty minutes while awake, water-moistened not alcohol, and lip balm every two hours. The Caring Info resource walks families through the technique.
Hydration
Thirst at end of life is not what families expect. The body winds down its need for food and fluid. Forcing fluids in a non-swallowing patient causes aspiration and distress. The caregiver offers sips of thick liquid or ice chips when the swallow is still safe. When swallowing is no longer safe, the caregiver keeps the mouth moist with swabs. This is the hardest instruction for families to accept.
Music and sound
Hearing is the last sense to fade. The caregiver builds a playlist from the person’s own music. For a West Orange woman born in 1934, that might mean Benny Goodman, Perry Como, early Sinatra, a hymn the family can name. The caregiver plays the music softly, two or three songs at a time, several times a day. The music in dementia home care page describes the protocol.
Dignity
Dignity is the quiet backbone of comfort care. The caregiver addresses the patient by name every time she enters the room. She narrates what she is about to do before she does it, even if the patient appears unresponsive. She covers the body during care. She closes the door when visitors arrive. The tone-before-words page describes the vocal register.
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Non-verbal pain assessment at the bedside
A patient at FAST 7c cannot say “my shoulder hurts.” The caregiver and the hospice nurse rely on the Pain Assessment in Advanced Dementia scale, called PAINAD. The scale scores five domains on a 0 to 2 scale. The total runs from 0 to 10.
The five PAINAD domains
- Breathing. Normal (0), occasional labored (1), noisy labored or long periods of hyperventilation (2).
- Negative vocalization. None (0), occasional moan or groan (1), repeated troubled calling out or loud moaning (2).
- Facial expression. Smiling or inexpressive (0), sad or frightened (1), facial grimacing (2).
- Body language. Relaxed (0), tense (1), rigid, fists clenched, knees pulled up, striking out (2).
- Consolability. No need to console (0), distracted or reassured by voice or touch (1), unable to console (2).
The caregiver scores PAINAD every shift and whenever the patient appears uncomfortable. A score of 1 to 3 is mild pain. A score of 4 to 6 is moderate. A score of 7 to 10 is severe. The score goes to the hospice RN, who adjusts the comfort medications (usually sublingual morphine or oxycodone concentrate from the hospice comfort kit). According to 24 Hour Home Care NJ, pairing PAINAD with the two-hour turn log catches the vast majority of positioning-related pain before the patient becomes agitated.
Non-pain distress
Not every grimace is pain. Terminal restlessness can be caused by a full bladder, constipation, temperature, or spiritual distress. The caregiver works the checklist before escalating to a pain medication: toileting first, position change second, temperature third, mouth care fourth, reassurance by voice fifth. If distress persists, the caregiver calls hospice.
The two-caregiver turn and skin integrity in the final weeks
Skin breakdown is the clinical risk that most consumes the care plan in the final weeks. A bed-bound patient at FAST 7c can develop a stage 2 pressure injury on the sacrum in forty-eight hours of inattention. Our West Orange care plans build the skin integrity defense around three practices.
The two-caregiver turn
Once a shift, we schedule a two-caregiver turn. The two caregivers meet at the bedside, the primary leads, the second supports the patient’s weight across the midline, the turn happens in one coordinated motion. The patient does not slide across the sheets. The shear force on the sacrum is reduced to near zero. We schedule the two-caregiver turn on the day shift when both the day and the overlap caregivers are present.
Barrier cream and brief changes
Every brief change in the final weeks includes a full peri-care pass with pH-balanced cleanser, a dry towel, a zinc-oxide barrier cream, and a documented note of any redness or breakdown. The caregiver photographs any new area of concern (with the family’s written permission) and sends the photo to the hospice RN the same day.
The heels
The sacrum gets most of the attention. The heels get skipped. A heel pressure injury in a bed-bound patient is a devastating problem. The caregiver floats the heels off the mattress with a pillow under each calf, repositions the pillows every two hours, and documents the position. The hospice RN inspects the heels every visit.

Caption: The two-caregiver turn protects the sacrum and shoulders during the final weeks of advanced dementia home care in West Orange. Photo credit: 24 Hour Home Care NJ.
The family vigil · how a 24-hour CHHA holds space without being in the way
The family vigil is the part of end-of-life home care that no one teaches in nursing school. The last days are a sacred space. The caregiver’s role shifts from doing to holding. The caregiver turns the patient every two hours, swabs the mouth every twenty minutes, documents what needs to be documented, and otherwise fades into the furniture. The family holds the hand. The daughter reads the Twenty-Third Psalm. The son plays the Yankees game on the radio because that is what Dad watched every Saturday for sixty years.
Where the caregiver sits
The caregiver sits in a chair across the room, not next to the bed. Close enough to hear a change in breathing, far enough to let the family have the bedside. If the family needs a break, the caregiver takes the bedside. If the family wants to crawl into the bed next to Mom one last time, the caregiver steps into the kitchen and makes tea. The burnout prevention page talks about the discipline of holding space.
What the caregiver says and does not say
The caregiver does not say “she will be gone soon” to a crying daughter. The caregiver does not say “he looks peaceful” to a son who thinks his father does not look peaceful. The caregiver says less, listens more, offers water, offers a tissue, offers to call the family member on the way from New York. The caregiver follows the hospice chaplain’s lead on spiritual language.
What the caregiver documents
In the vigil phase, documentation becomes clinical minimalism. Breathing pattern changes with timestamp. Last urine output. Last swab of the mouth. Position changes. Family members present. The caregiver documents during turn intervals in the one-page log the hospice RN picks up on the next visit.
A West Orange week in end-of-life home care
This is a representative weekly schedule showing hospice visits overlaid with 24-hour private-pay CHHA shifts in a West Orange home. The pattern is not the only pattern. The hospice visit cadence varies by agency and by patient need. The CHHA shift pattern is what we build at 24 Hour Home Care NJ.
| Day | Hospice visits | 24-hour CHHA shifts | Family presence |
|---|---|---|---|
| Mon | Hospice RN 10:30 a.m. (45 min) | Day 8a-4p · Eve 4p-12a · Night 12a-8a | Daughter 6p-9p |
| Tue | Hospice aide 9 a.m. (bath, 60 min) | Same three shifts | Son 7p-10p |
| Wed | Social worker 2 p.m. (30 min) | Same three shifts | Daughter all day |
| Thu | Hospice RN 11 a.m. (45 min) · Chaplain 3 p.m. (45 min) | Same three shifts | Daughter 6p-9p |
| Fri | Hospice aide 9 a.m. (bath, 60 min) | Same three shifts | The Friday family email at 7 p.m. |
| Sat | On-call only | Day 8a-4p (same aide) · Eve same · Night same | Both children all day |
| Sun | On-call only | Same three shifts | Son and granddaughter afternoon |
Four hospice visits in a seven-day week, totaling roughly four hours of hospice presence. Twenty-one CHHA shifts, totaling 168 hours of continuous presence. Family presence overlaid wherever the family can be present without burning out. The Friday family email at 7 p.m. summarizes the week, flags any changes, names the caregiver on each shift for the week ahead, and names any substitutions.
Private pay path for end-of-life home care · short runway, concrete numbers
The private pay runway for end-of-life dementia home care in West Orange is usually short. Clinical trajectories measured in weeks or a few months mean families are often looking at a six- to sixteen-week period of 24-hour private-pay coverage. The private pay home care Essex County page walks through the funding structure in detail. The numbers below are indicative. The exact rate the family sees depends on the shift pattern, the acuity, and whether the schedule is three-shift or live-in.
Three funding paths families use
- Family funds. Checking, savings, and sometimes a short-term reverse mortgage line of credit. We help the family build a weekly projection so the runway is clear from day one. According to 24 Hour Home Care NJ, we do not start a 24-hour schedule in West Orange without the family understanding the weekly burn rate and the expected duration.
- Long-term care insurance. Policies from John Hancock, Genworth, MetLife, or AARP long-term care often pay a daily benefit for 24-hour home care when the patient meets activity-of-daily-living triggers (usually two of six ADLs requiring assistance, or cognitive impairment). The policy pays after an elimination period, typically 30, 60, or 90 days from the first qualifying day. We help the family open the claim, submit the plan of care, and send the daily shift notes the carrier requires.
- VA Aid and Attendance. For wartime-service veterans or surviving spouses, the VA pension pays a monthly tax-free benefit (roughly $1,500 to $2,700 a month in 2026) to offset home-care costs. The application takes weeks to months, and the benefit is retroactive to the application date in many cases. The NJ Division of Aging Services helps families start the application.
What a six-week schedule looks like
A six-week schedule with three 8-hour shifts per day, same primary caregiver 94 percent of the time, covers 1,008 total hours. Billing is weekly or biweekly, direct deposit from the family. The care-plan RN on staff updates the plan every two weeks. Sofia at (908) 912-6342 handles schedule changes same-day.
The short-runway conversation
Families often ask whether a shorter runway (two weeks, three weeks) makes financial sense when hospice is involved. The honest answer from 24 Hour Home Care NJ is that the private pay layer is what lets the family rest, lets the family be family instead of medical staff, and lets the final chapter happen at home instead of in an inpatient hospice unit. A short runway of two or three weeks is often the exact length the family needs.
Our West Orange home care page, West Orange Sofia RN hub, and Essex County hub cover the service area. For the dementia umbrella across Essex County see dementia and Alzheimer’s home care in Essex County. For wider framing see Alzheimer’s home care across New Jersey. For sleep-cycle disturbance, see our nighttime routines page.
Start the end-of-life dementia care conversation in West Orange
Sofia Elmer answers · care-plan RN on staff · same-week start
Frequently asked questions
Does Medicare cover 24-hour home care at the end of life for dementia?
Medicare covers hospice, which is a visiting benefit of intermittent nurse and aide visits totaling a few hours per week. Medicare does not cover 24-hour continuous home care. The 24-hour private-pay certified home health aide layer is funded by family funds, long-term care insurance from John Hancock, Genworth, or MetLife, or VA Aid and Attendance. Call (908) 912-6342.
Can we have hospice and your 24-hour caregiver at the same time?
Yes. The two layers work together. Hospice is Medicare-covered and sends the RN, aide, social worker, chaplain, equipment, and medications on a visiting schedule. The 24-hour private-pay certified home health aide stays with your parent the other 164 hours. The two agencies share one plan of care. This is the pattern most West Orange families use.
How soon can you start a 24-hour schedule in West Orange?
Same week in most cases, same day on urgent discharges. The Sofia Elmer line answers at (908) 912-6342. We dispatch the care-plan RN on staff to the home within 24 to 48 hours, and start the first shift when the family is ready. Families coming home from Mountainside Medical Center or Daughters of Israel often start the day of discharge.
What if my mother only has a few weeks left?
Short runways are common at FAST stage 7c. A two- or three-week period of 24-hour home care is often exactly what the family needs. The weekly projection makes the burn rate clear up front. The care-plan RN on staff writes the plan on day one and Sofia at (908) 912-6342 reviews the schedule with the family every Friday.
Can the caregiver give morphine from the hospice comfort kit?
No. A certified home health aide cannot administer medications. The hospice RN or a trained family member administers comfort medications. The caregiver observes the patient, documents the response, and calls the hospice on-call line when a change happens. The division of roles is written into the plan of care.
What is your area in West Orange and the rest of Essex County?
24 Hour Home Care NJ covers West Orange zip codes 07052 and 07043, plus Livingston, South Orange, Maplewood, Montclair, Verona, Caldwell, Essex Fells, and the rest of Essex County. We also cover Union and Morris counties. The service list is on the Essex County hub.
How many caregivers rotate on a 24-hour schedule?
Usually two primary caregivers and one weekend specialist, three regular faces in the house. The same primary works Monday Wednesday Friday 94 percent of the time, the second covers Tuesday Thursday and alternate weekends. Every substitution is named in the Friday family email so the family always knows who will be at the bedside.
Do you work with specific hospices in West Orange?
We work with any hospice the family selects. We do not refer to specific hospices because the hospital case manager, Mountainside social worker, or Daughters of Israel discharge planner is the right person to walk the family through the choice. Once the family chooses, we build the private-pay layer around it and share the plan of care with the hospice RN.
What happens the night our mother dies?
The caregiver on the night shift calls the hospice on-call RN the moment breathing stops. The hospice RN comes to the house, pronounces, and starts the post-death process. The caregiver stays with the family until the funeral home arrives, then for an additional hour or two to help the family through the first calls.
About the author
Sofia Elmer · Care Coordinator · 24 Hour Home Care NJ. Sofia Elmer coordinates care at 24 Hour Home Care NJ. She writes every care plan with the RN on staff. She picks up the phone at (908) 912-6342 during business hours. ★ 4.9 · verified by families across Essex, Union, and Morris counties.
Last reviewed by Sofia Elmer and the care-plan RN on staff, 2026-10-13. Content is informational and does not replace medical advice. For end-of-life care decisions, consult the hospice medical director, the primary care physician, or the palliative care team at Mayo Clinic and the Alzheimer’s Association.
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