for a dying loved one isn't easy. Even when you know the end of life is
approaching, you might not feel prepared and can oftentimes become overwhelmed.
Understanding what to expect and what you can do to increase your loved one's
comfort can help.
General Tips for the Terminally
Ill, Hospice Patients, and Loved Ones
- Ask questions to make an educated decision regarding the best
choices for hospice and palliative care in your area.
- Discuss your loved one’s end-of-life
wishes including the need for legal documents such as Living Will, Power
of Attorney, or Advanced Directives. Be sure all family members are aware
of these wishes.
- Find out your loved one’s desires
and goals in approaching the end of their life especially where they would
like to die (at home or in an inpatient setting), if they still want to go
back to the hospital, how important pain relief is to them etc.
- Talk about funeral arrangements
while your loved one is still able to express their wishes.
- Don’t be afraid to advocate for
your family member – if the patient is on hospice, the hospice may know
most about dying but you know your loved one best.
- As your loved one approaches the
end of life, he or she may talk about spirituality or the meaning of life.
Don't force the subject — but if it comes up, en-courage your loved one to
explore and address their feelings.
- Anticipating your loved one’s
death can pro-duce reactions from relief to sadness to feeling numb.
Consulting bereavement specialists or spiritual advisors before your loved
one’s death can help you and your family prepare for the coming loss.
- You can help your loved one
communicate their final wishes for family and friends. Encourage your
loved one to share those feelings, including thanks or forgiveness and
give others a chance to say goodbye. This may stimulate discussion about
important, unsaid thoughts, which can be meaningful for everyone.
- Your loved one might also find it
comforting to leave a legacy — such as creating a recording about his or
her life or writing letters to loved ones, especially concerning important
Tips on Caring for a
Loved One as Their Health and Strength Diminish
- Ask your loved one how they would
like to spend their last days or months and what they might want to
accomplish during this time.
- Don’t be afraid to ask the Hospice
nurse and/or Hospice aide to show you what to do and to give you
- Hospice aides are usually in your
home for short amounts of time a few days a week. You may need to
supplement your loved one’s care with additional help from family members
or privately paid caregivers.
- Hospice offers "respite” stays in
long-term care facilities to give breaks to your loved one’s caregivers.
- If your loved one is having
trouble walking, talk to your hospice team about obtaining a walker or
wheel chair and training on safe patient transfers. Don’t be embarrassed
to ask your hospice/palliative care team questions – they have probably
heard these concerns before.
Tips on Caring for the
- XL twin sheets or sheets made of
Jersey material work best on hospital beds.
- Additional sheets can assist you
in turning and positioning your loved one. The hospice caregivers can help
you learn this.
- Use a waterproof mattress pad.
- Bed pads (cotton side toward your
loved one, waterproof side toward the bed) are more comfortable than the
disposable bed pads; don’t allow pads to wrinkle or bunch up which can
cause skin damage.
- Dress your loved one in easy
on-easy off night clothes that allow you to turn and re-position them.
- Hospital beds are not comfortable
in general. An egg-crate or memory foam overlay or alternating air
mattress overlay may make the bed more comfortable.
- If your loved one cannot adjust
themselves in bed, you will need to help shift positions regularly to
avoid skin problems.
Tips for Family/Loved
- Dying can be a longer process than
you may have anticipated; it does not occur on a specific schedule.
- Keep all family members involved
and try to encourage them to be pre-sent with your loved one.
- Let family members know that
simply sit-ting and holding hands or putting on skin lotion lets your
loved one know that you are there for them and that you care.
- Try to continue favorite
activities like reading to your loved one or listening to favorite music
- Contact with pets or trained
therapy animals can bring pleasure and comfort.
- Surrounding a loved one with
pictures and mementos, reading aloud from treasured books, playing music,
giving long, gentle strokes, reminiscing, and recalling life stories
promote dignity and comfort all the way through life’s final moments.
- Family conflicts may occur.
- Remember all people react to
stress differently and often the death of a loved one brings to the surface
other difficult times in your life. Try to keep your sense of humor, funny
Common Symptoms in End of Life Care
HOW TO PROVIDE COMFORT
visits and activities for times when the patient is most alert.
patients are still able to hear after they are no longer able to speak, so
talk as if he or she can hear.
Confusion about time, place, identity of loved ones
calmly to help to re-orient the patient. Gently remind the patient of time,
date, and people who are with them.
Loss of appetite, decreased need for food and fluids
the patient choose if and when to eat or drink. Ice chips, water, or juice
may be refreshing if the patient can swallow. Keep the patient's mouth
and lips moist with products such glycerin swabs and lip balm
Loss of bladder or bowel control
the patient as clean, dry, and comfortable as possible. Place disposable pads
on the bed beneath the patient and remove them when they become soiled.
Skin becoming cool to the touch
the patient with blankets but avoid electric blankets or heating pads, which
can cause burns.
Labored, irregular, shallow, or noisy breathing
may be easier if the patient's body is turned to the side and pillows are
placed beneath the head and behind the back. A cool mist humidifier may also
How to Help Cope
with Your Loss
end-of-life period, when body systems are shutting down and death is near
usually lasts from a matter of days to a couple of weeks. Some patients die
gently and calmly, while others seem to fight it. Reassuring your loved one
that it’s okay to die, can help both of you through this process. Remember to
be consistent with your loved one’s decisions about hydration, breathing
support and other interventions regarding advanced directives.
Most importantly, continue to talk to and touch your loved one even if they
appear unresponsive – hearing and feeling are the last senses to go. Remember
that this is still the person you have loved and respected even when they are
unresponsive. Don’t be afraid to allow the hospice team to help you through
this difficult but gratifying time.
your loved one has passed away, some family members and caregivers are
comforted from taking some time to say goodbye, talk, or pray, before
proceeding with the final arrangements. Allow that time if needed. After the
loss of your loved one, a caregiver’s life is never the same. It can, however,
be happy, fulfilling, and healthy again. Take time to reflect on your loved
one’s life and remember the quality time that you were able to share together.