Welcome to House of Light, a blog produced and managed by the staff of Casa de la Luz Hospice. Casa de la Luz ("house of light" in Spanish) is a locally owned and operated hospice, serving the city and surrounding communities of Tucson, Arizona. Through this blog, we hope to offer education, information, and support about caregiving and hospice care to terminally ill patients and their loved ones. For more information, visit the contact us page.

Monday, December 5, 2011

Tips for Caring for an Ill Loved One at Home

The veteran home care nurse and the rookie nurse entered the home of a woman who needed daily IV antibiotic therapy.  As he washed his hands, the nurse asked about the patient’s garden, and they shared garden secrets while he got a wire hanger from the closet, attached the IV bag and hung it on the curtain rod.  As the two debated fertilizer versus compost, the nurse hooked up the IV and then turned the conversation to the woman’s health.  I, the rookie, was in love…with home health. 

Home health and home hospice are about the patient and family, and about bringing services into their home.  The goal is to discover what people need, to empower patient and caregiver, and to give them what they need in the least invasive and most respectful manner possible.

Family caregivers need wipes, gloves, and skin cream.  They also need to be taught skills and given the tips to make living with illness and caregiving easier.  Here, in no particular order, are some helpful hints and tips from a nurse who fell in love with home care 15 years ago.

  • Olive oil is a great lip balm.
  • A box of baking soda absorbs odors.
  • Have hand sanitizer near the front door and tell everyone to use it.
  • Buy a dozen or more washcloths at the discount store.  Cheap ones get softer faster.  They’re great for cooling a hot brow, wiping a sweaty back and cleaning the diaper area.  Launder in hot water with soap and bleach.
  • Sippy cups are handy and less messy than straws.
  • Call bells.  Jingle bells.  School bells.  Whistles.  There are so many choices.  Consider a wireless door bell.  The caregiver can carry the bell in a pocket anywhere in the house and often in the yard. 
  • Designate shelves or drawers for supplies and health care paperwork. 
  • Keep a notebook or whiteboard to write down needs and questions for the nurse, social worker, or home health aide.
  • Take pain medicine when pain starts.  Most pills take about 45 minutes to work.  When you wait until “it really hurts,” it usually takes more pain medicine over time to get you comfortable.
  • Children often feel scared and helpless around sick people.  Give them a job and let them know how it helps Grandma or Tio.  Tiny children can fetch a washcloth or pat a hand.  Little children can draw pictures and put lotion on Auntie’s hands.  Older children can keep cool water at bedside or make a sign telling everyone to use hand sanitizer.  Teenagers can get a cup of ice chips at the convenience store and do nail care.  Assign tasks according to the age and temperament of the child.
  • Music that the patient likes is soothing.
  • Every time you turn the patient, use a damp washcloth to wipe their back.  If they need it, apply lotion, cream, or powder.
  • Laugh.  Laugh with one another at all of the awkwardness and absurdities.  See the humor in mistakes and misunderstandings.  Allow jokes to help you deal with the horror of disease (one family called Mom “Lefty” after her mastectomy) and the messiness of illness. 
Life is messy.  Illness, caregiving, dying, and grieving are some of the messier parts of life.  None of us can do it alone.  Not even you!  So please, do the people who want to help you the honor of asking for help.

By Mary Toren, RN

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