Hospice Help

With my dear aunt ill in the ICU again, Mama's grandfather in the end stages of his life in Bangkok, a friend's mother possibly entering hospice soon, and my own hospice volunteer work starting up again after a summer hiatus, I've been thinking a lot about dying, death, and hospice recently.  I attended a fantastic training a few weeks ago based on the DVD entitled, Facing Your Fears:  Straight Talk about the Dying Process (from a book, Dying to Know by Tani Bathi.)  The video, some of which is excerpted on YouTube (tbathi's chanel), is a very straightforward, sensitive, and informative explanation of what caregivers can expect as their loved ones enter the final days and weeks of their lives.  If I could, I'd give a copy to all those who needed it.  Instead, here are my notes, with some alterations in order and a few additions, on death and dying for caregivers.

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Signs to look for:

·         Sleep is so important, sacred even at this time.  Patients will sleep more, coming in and out of consciousness.  Sometimes they see or hear things that no one else in the room does.  These visions are often comforting.

·         Eating:  people’s bodies will not need much food at the end and patients lose their appetites.  It can be so hard to allow someone we care about to stop eating—but encouraging or cajoling them into eating can actually hurt them physically (constipation, even feeding just a cancerous tumor), so not feeding them can be a gift. 

·         Drinking:  Patients often don’t need a lot of liquid.  Natural dehydration actually helps the body by eliminating excess fluid that the heart has trouble dealing with.  Excess liquid can cause swelling in hands and feet and discomfort.  Signs of natural dehydration include eyelids won’t close all the way and ear lobes begin to droop.  Ice chips or wet swabs can help with dry lips, also lip balm.  *It is important to note  that patients don’t die because they aren’t fed or hydrated but because they are ill with something else; not eating and drinking is a symptom of dying, not its cause.

·         Other signs:

o   Breathing:  can become labored (Cheyne-Stokes breathing, with lots of time between breaths)—but it doesn’t hurt the patient; natural chemicals released by body can reduce pain and panic.  If there is some difficulty breathing, angle a fan at the side of patient’s face, which relaxes the facial muscles and helps ease breathing.  Also, if you breathe slowly that helps the patient.  Finally, so-called death rattle is loud and can bother listeners but again it doesn’t hurt or bother the patient.

o   Hands and feet can become cold or even mottled (like purple bruises); looks disturbing but isn’t bothering patient.  Often a sign that death is very near (days or even hours.)

o   Lazarus Syndrome—an unexplainable surge of increased energy and interaction near the very end; death often follows within hours or a day.

What you can do:

o   Talk, sing, pray—hearing is the last sense to go.  Tell family stories.  Say what you’ll remember most.  Sometimes it helps to give patient permission to go.  “I’ll love you, but I will be okay.  You can go.”
o    Take photos, cards, and signs to decorate their room and nightstand.  This gives you and other visitors, even the hospice team, something to talk about besides health and the obvious.  Photos especially are a nice jumping-off point for bringing up good memories and loved ones.

o   Touch is important—brush hair, rub lotion, touch arms and hands, even crawl in bed—ill and elderly patients can be very isolated physically

o   Question to ask yourself, “What’s the most important thing today?”

o   Think of loved one’s energy as finite amount of money to spend each day, save it for what is most important—ill or elderly people’s pulse can be like that of a marathoner (normal is around 60 bpm; theirs can be 90-120+bpm; tire quickly, even just dressing)

o   Remember to take care of yourself:  eat, drink, sleep, get fresh air, take breaks.  You help the patient more when you help yourself.

o   Patients often have some control over the time of death—after a special date or visit, when everyone is nearby or when everyone is gone.  If your loved one dies when you are not in the room, it was probably their choice, to make it easier on themselves and on you.