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Caregiving 101

Caring 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 future events.


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 care-giving tips.
  • 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 Bed-Bound Patient

  • 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 Ones

  • 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 or movies.
  • 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 things may.

 

Common Symptoms in End of Life Care

SYMPTOMS

HOW TO PROVIDE COMFORT

Drowsiness

Plan visits and activities for times when the patient is most alert.

Becoming unresponsive

Many 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

Speak 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

Let 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

Keep 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

Warm the patient with blankets but avoid electric blankets or heating pads, which can cause burns.

Labored, irregular, shallow, or noisy breathing

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 help.


How to Help Cope with Your Loss

The 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.

After 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.

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