What to Expect When Your Loved One Begins Hospice
In the first day or two after admission, a hospice nurse visits to review the plan of care with you, set up medications and equipment, and explain how to reach us 24/7. The pace is intentionally unhurried — we want you to feel oriented, not rushed.
Visits then settle into a rhythm tailored to your loved one's needs. Most families will see the nurse one to three times a week, the aide more often for hygiene help, and the social worker and chaplain on a regular cadence. As needs change, the team adjusts.
The first hours and days
- An admission visit from a registered nurse to review the care plan, answer questions, and orient you and your loved one to hospice.
- A written plan of care reflecting your loved one's goals, the family's preferences, and the team's clinical assessment.
- Comfort medications and any needed equipment (hospital bed, oxygen, wheelchair) coordinated and delivered to the home.
- A 24/7 nurse line activated for any question, day or night.
- The interdisciplinary team — nurse, aide, social worker, chaplain — introduced and visit schedules set.
Caring at Home — The Practical Basics
Your hospice nurse will teach you what you need to know at the bedside, and the team is on call 24/7 for anything that comes up. The notes below are orientation, not a substitute for that teaching.
Medications
Comfort medications are organized in a kit and delivered to the home. The nurse walks you through what each medication is for, when to give it, and how to record what you give. Keep medications in a cool, dry place out of reach of children.
Never give a medication you have not been instructed to give. When you're unsure, call the on-call nurse first — that's what the line is for.
Oxygen Concentrator
If your loved one needs oxygen, a concentrator is delivered with tubing and a nasal cannula. The nurse will set the flow rate; you do not need to adjust it.
Keep flames, smoking, and flammables at least 5 feet away from the concentrator and tubing. Do not use petroleum-based products (Vaseline, oil-based lotions) around the cannula.
Power outage: small portable tanks are typically provided as a backup. Confirm the backup plan with the nurse at admission and call the on-call line if you are unsure.
Detailed device handling is taught at the bedside by the nurse — this page is orientation only.
Equipment (Hospital Bed, Commode, Wheelchair)
Equipment is delivered, set up, and serviced by the hospice's medical-supply partner. If something breaks or stops working, call our office — we will arrange replacement or repair.
Hygiene & Skin Care
Hospice aides assist with bathing, dressing, and personal care on a scheduled cadence. Between visits, gentle skin care and repositioning your loved one about every two hours helps prevent pressure injuries. Mouth care — moistening the lips and inside of the mouth — becomes especially important as drinking decreases.
Eating & Drinking Changes
Appetite and thirst naturally decrease near the end of life. Your loved one may want only sips of water, a favorite taste, or nothing at all. This is a normal part of the body slowing down, not suffering from hunger or thirst.
Forcing food or fluids can cause distress, choking, or fluid in the lungs. Offer small sips, ice chips, or favorite tastes when your loved one wants them, and follow their lead.
Understanding the Dying Process
This is the hardest section to read. Many families come back to it days or weeks later. Skip ahead if you need to — the sidebar lets you jump past it.
The order and timing of these changes vary. Not every person experiences every sign, and some signs come and go. This is general guidance, not a prediction. Your hospice nurse can talk through what you are observing.
In the weeks ahead
- Sleeping more during the day and waking less easily.
- Withdrawing from social activity, conversation, or favorite pastimes.
- Eating and drinking less; gradual weight loss.
- More fatigue and less energy for movement.
In the final days
- Eating and drinking very little or stopping altogether.
- Sleeping most of the time and being harder to wake.
- Changes in breathing pattern — sometimes faster, sometimes slower, with pauses.
- Less consistent response to voice and touch.
- Hands and feet may feel cool; skin color may begin to change.
In the final hours
- Irregular breathing with longer pauses between breaths.
- Audible congestion in the chest or throat — the family often hears it more than the patient feels it.
- Color changes in the skin, particularly around the lips, hands, and feet.
- Eyes may remain partly open; response may cease.
- A period of quiet stillness.
Hearing is widely believed to remain longest. Speaking softly and saying what you want to say is always appropriate.
If you see something new or worrying — a sudden change in breathing, distress, a fall, anything that feels urgent — call the on-call nurse. We can talk through it, visit if needed, and stay on the line.
Managing Pain & Symptoms — When to Call
When in doubt, call the on-call nurse. It is always the right call. We can talk you through what you're seeing, adjust the care plan, or come out for an in-person visit.
Call the on-call nurse for
- New or worsening pain not relieved by the prescribed medication.
- Shortness of breath, choking, or difficult breathing.
- Restlessness, agitation, or sudden confusion.
- Vomiting, especially if it cannot be kept down.
- Fever, signs of infection, or unusual bleeding.
- A fall, even if there is no obvious injury.
- Any sudden change in condition that worries you.
Please do not call 911 unless you intend to revoke the hospice election. A 911 transport often leads to a hospital admission and curative treatment, which conflicts with the hospice benefit. For symptoms, our 24/7 nurse line is the right first call — we will help.
Caring for Yourself — Caregiver Wellness
Caregiving is exhausting work. Recognizing the signs of burnout — without judgment — and asking for help early is the most important thing you can do, both for yourself and for your loved one.
Signs of caregiver burnout
- Persistent exhaustion that sleep does not fix.
- Trouble sleeping or sleeping too much.
- Increased irritability or short temper.
- Withdrawing from friends, family, or activities you enjoy.
- Getting sick more often than usual.
- Feelings of resentment, guilt, or numbness.
Ask for help
Help is built into hospice. Some specific options to ask the team about:
- Respite Care — up to five days of inpatient stay so you can rest
- Trained volunteers — companionship, short errands, a presence in the home
Our social worker offers caregiver counseling and can help connect you with community support and faith-based resources.
After the Loss — Bereavement Support
Bereavement support is not an add-on to hospice — it is part of hospice. Surviving family members receive support for thirteen months after the death, at no cost.
Our bereavement program continues for thirteen months and may include phone check-ins, support-group information, mailings about coping with grief, and a contact around the anniversary of the death. →
Grief looks different for everyone
Grief is not linear and does not follow a schedule. You may feel waves of sadness, relief, gratitude, anger, numbness, or sudden tears at unexpected moments. All of this is normal. Be patient with yourself.
When to seek additional help
Reach out to a counselor or a primary care doctor — and let our bereavement coordinator know — if you experience prolonged inability to function, hopelessness that does not lift, persistent insomnia, or any thoughts of harming yourself.
If you or someone you know is in crisis, call or text: 988 — Suicide & Crisis Lifeline (call or text, free, 24/7)
Quick References
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Who to call
- Hospice 24/7 nurse line — (818) 824-3702
- For symptoms, medication questions, equipment problems, any clinical change.
- Hospice social worker
- For emotional support, family concerns, practical-help questions, community resources.
- Hospice chaplain
- For spiritual care, end-of-life meaning, prayer or ritual, in any tradition.
- 988 — Suicide & Crisis Lifeline
- Call or text, free, 24/7. For mental-health emergencies for the caregiver or any family member.
- 911 — only if revoking hospice
- A 911 transport typically leads to hospital admission and curative treatment, which conflicts with the hospice election. For symptoms, call the hospice nurse line first.
Have ready for nurse visits
- Current medication list and the medication record (when each dose was given).
- A short diary of new or changed symptoms since the last visit.
- Questions for the nurse — written down so they are not forgotten.
- Family contact list and any change in primary caregiver since the last visit.
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