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Caring at home, near the end

The last weeks and days. What you may see, and who to call.

For families caring for someone at home. This is what hospice educators say families often see, and what tends to help. It is not a way to judge what is happening to your person. That is the hospice nurse’s job, and they want your call.

You do not have to know what a change means.
When something changes, call the hospice line. Day or night.
Calling is never a bother. It is what the line is for.

The last months and weeks

Many people slowly pull inward. Everyone is different, and not everyone has these changes.

  1. More sleep, less energy. Visits get shorter. Sitting quietly together counts. Ask when their good hour tends to be.
  2. Less interest in food and drink. This is one of the hardest things for families. The Hospice Foundation of America advises never pushing food or fluids. Ask the nurse what to offer and how.
  3. Pulling back from people and activities. It is not a judgment on you.
  4. Now is the time for what they still want to say or do: a letter, a recording, a visit, the garden one more time. And for deciding who will be there at the end, and who sleeps when.

The last days: what you may notice

What the sources say is often true, and what helps. Each one ends the same way: tell the nurse.

  1. Sleeping most of the time, then hard to wake. Most people can still hear after they can no longer speak, the National Cancer Institute says. Keep talking to them, not about them. Say who you are when you come in.
  2. Breathing changes: shallow or fast, or long pauses between breaths. Note the time and what you see, stay close, and call. Do not try to guess how long.
  3. Noisy or rattling breathing. Saliva can collect in the throat. Hospice educators say it does not usually mean the person is in distress, but it is hard to hear. The nurse may change their position or offer a medicine.
  4. Cool hands and feet; pale, grey, bluish or blotchy skin. A light blanket helps. Do not use a heating pad. Tell the nurse about any new sore or wound.
  5. Restlessness: picking at the sheets, trying to get up. Speak slowly and quietly, lower the light and noise, and watch for a fall. Call now: restlessness can come from pain or something else the team can treat.
  6. Seeing or talking to people who are not there, often people who have died. Do not argue or correct. Listen. Tell the nurse if they seem frightened.
  7. A sudden good day: more alert, talking, hungry, knowing people again. The National Institute on Aging says it is likely brief and not a sign of getting better. Use the time as you wish.
  8. Mouth dryness. Lip balm and a soft damp cloth or swab help, the way the nurse has shown you.

For you, the one doing the caring

What you are doing is hard, and it matters. Looking after yourself is how you keep going.

  1. Ask the hospice who covers the nights. Ask how often someone will visit, and what happens between visits. The nurse line answers at any hour.
  2. Ask about respite. Medicare’s hospice benefit lets your person stay in an approved facility for up to 5 days at a time so you can rest. You do not have to justify a break.
  3. Name a need. Ask two people to be on standby for one thing each: a call, a grocery run, the dog, a hug. Being asked is a gift to them.
  4. Talk to someone. The National Caregiver Help Desk: (855) 227-3640, Monday to Friday, 8 a.m. to 7 p.m. Eastern. For help in a crisis, call or text 988.
  5. Look for help you may qualify for. BenefitsCheckUp, from the National Council on Aging, finds local programs. Ask your employer what caregiver support it offers.
  6. Grieving before the death is common. It does not mean you have given up.

If there is no hospice yet

You can still get help tonight, and it is not too late to ask.

  1. If something is frightening or changing fast, call their doctor’s after-hours line, or 911 in an emergency. No one should talk you out of calling.
  2. Tomorrow, ask their doctor whether hospice could help now. Palliative care or hospice? explains the difference.
  3. If they are on hospice, the hospice comes first, before 911, for a symptom at 2 a.m. Why. When the death comes: who to call first.

Where this comes from

Changes in the last days, hearing, the “death rattle”, skin and colour, confusion and seeing people who have died: National Cancer Institute, Last Days of Life (PDQ). Never pushing food or fluids, unresponsiveness, breathing pauses, restlessness and the hospice team’s role: Hospice Foundation of America, When Death Is Near. Speaking to the person, mouth comfort, a sudden clear spell: National Institute on Aging, Providing Care and Comfort at the End of Life. Restlessness and noisy breathing: Hospice UK, The last few days. The last months and that not everyone has these changes: Marie Curie, Stages of dying. The 24-hour hospice line: CaringInfo, Hospice care. Respite of up to 5 days at a time: Medicare.gov, Hospice care. The help desk and its hours: Caregiver Action Network.

The caregiver section owes several ideas, “name a need” among them, to Nobody Talks About Dying, a free zine for caregivers by Sarah Richards, a death doula. It is short, kind, and worth printing.

This page is general information, not medical advice. Quality Death does not provide medical care. For what a change means for your person, call their hospice nurse or clinician. For doulas, the fuller version with every source is Module 2 of the training.