There is nothing more difficult for a caregiver than to sit at the bedside of a loved one who is dying and watch them suffer. We have an innate sense to help, and in these situations, most of us just want to do something—anything—to make them feel better.
At the end of life, your loved one may experience pain, shortness of breath, secretions, restlessness/agitation or changes in temperature. While all of these symptoms are “normal,” hospice focuses on providing comfort—for both the patient and the caregivers. Hospice professionals are specially trained to provide relief.
As the caregiver of a loved one with a terminal illness, here are things you can do to cope with another person’s pain and symptoms:
Help your loved one report symptoms and ask questions. Many patients downplay the true level of pain they experience to their doctors. Keep a chart of pain and symptoms and report as much information as you can to the Hospice nurse. The more information you provide, the easier it will be to manage pain and symptoms.
Learn about medications. Using medicines is the most common way to relieve pain and symptoms. Know your options.
Focus on what you can do. You may not be able to take away your loved ones pain, but you can be present; you can hold his or her hand; you can sing; you can share stories.
Watch for signs of distress and act. Watch for non-verbal cues of pain, such as grimacing, furrowed brow and clenched/grinding teeth, and report these cues to the Hospice nurse. Try repositioning your loved one, such as elevating the head of the bed. If your loved one experiences an elevated temperature, offer a cool cloth to the underarms and forehead or a fan, use a light sheet instead of a heavy blanket. Offer medications prescribed by the Hospice nurse to calm and relax the patient.
Take time for you. Give your mind a break. When your loved one is in pain, you’re in pain too. Take periodic, short breaks. Go for a walk, read a book, take a nap.
Provide a distraction. Play soft music. Offer a foot massage. Practice deep breathing. Watch television. Play cards or games. Read aloud.
Keep your loved one as comfortable as possible. Keep your loved one clean and dry, including gown, sheets and hair. Ask the Hospice nurse about mouth swabs, mouth moisturizer and lubricant for lips.
With Hospice, you are not alone in caring for your loved one. Trained professionals are always a phone call away to provide physical, emotional and spiritual care for the patient, as well as bereavement support for the family after a death.
Dame Cicely Saunders, founder of the first hospice said it best, “You matter to the last moment of your life…” This quote is the foundation of what we do, and shapes the care we provide to patients and their caregivers on this end-of-life journey.
Judy Peterson is a manager of clinical development at Hospice of the Red River Valley.