Practical Tips for Caregivers: Helping Someone You Love at the End of Life

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Guest post by Regina Q. Boffi, RN,
2011 Massachusetts General Hospital's Cancer 100 Honoree

"Regina Boffi, RN, is a gifted caregiver to patients with cancer at the Maples Rehabilitation and Nursing Center in Wrentham, Mass. With great kindness and skill, Regina assists patients coming to the end of life and guides family members in comforting and caring for their loved ones. Recently, Regina’s devotion and skill as a caregiver was of immeasurable help to her own family. She managed the care of her father as he succumbed to multiple myeloma, and then cared for her mother as she was dying of non-Hodgkin’s lymphoma." Based on her personal and professional experiences, Regina developed these sensitive, practical guidelines for her fellow students in the LPN-to-RN program at Massasoit Community College.

1. It is OK to grieve. Caring for yourself will make you a better caregiver.

2. Explain what you are doing. Whether administering medications, repositioning o bathing your loved one, always let them know what you are doing. They can hear you, and it will make them more comfortable to know what is happening and why.

3. Touch your loved one. Hold their hand. Use lotion on their skin as you gently massage their arms, legs, back or feet. Greet them as you usually do, with a hug or a kiss.

4. Help other family members cope. Teach them how to help if they seem lost, afraid or distant. Ask them to help with something tangible: changing a pillow case, giving medication, or getting your loved one a drink or a cold cloth for their face. Giving comfort to the loved one can comfort the giver as well.

5. Say a private goodbye. Encourage all family members and friends to spend some time alone with the loved one.

6. Implement comfort measures... but don’t force food or fluids. They will take what they want to, and that is enough. Give mouth care. Use a sponge tip swab dipped in water, rub it around mouth and teeth and then apply moisturizer to lips. Sometimes family members think they are starving their loved ones and request IV fluids, but at the end of life these types of treatments can cause increased secretions, difficulty breathing, and displacement of fluids. Use incontinent briefs to maintain dignity. Keep the environment as they would if they were well. If they usually listen to radio or TV, then turn them on... keep in mind the types of music and the types of programs they like. Turn lights off at the usual bedtime, and turn them on at the usual time of waking. Open the shades in the morning and pull them down at night.

7. NEVER have regrets. Tell your loved one you love them, what they meant to you, that you will miss them. Talk about special memories you have. Hearing is the last sense we lose, so talking to your loved one will comfort them.

8. Let them know it is OK to let go. Let them know that you will be all right... sad, but all right. Depending on their beliefs, remind them where they are going, who they might see. Many people wait to pass away until they are alone; although you do not want to leave your loved one, remember that they may want some time to themselves. Give them a kiss, and take a little break.

9. GIVE MEDICATIONS. Make this process as pain-free and peaceful as possible. Medication can help to eliminate anxiety, restlessness, nausea, and increased congestion. The hospice staff will help you get the appropriate medication; some commonly used medications include:

  • Morphine Sulfate liquid. This can be given under tongue. The liquid is a high concentration of morphine, so it can be absorbed without the person having to drink, swallow or get injections. Morphine decreases pain and decreases respiratory distress( congestion and increased breathing rate)
  • Ativan. This can also be given in liquid. Ativan can greatly reduce anxiety and restlessness.
  • Compazine or Zofran for nausea.
  • Levsin or scapolamine patch to decrease the respiratory secretions that are a natural part of the body’s shutting down.
  • Tylenol suppositories for fever.

To reiterate: DO NOT BE AFRAID TO GIVE MEDICATIONS; this is one of the most important parts of giving your loved one a peaceful death.

Above all, know that you are giving a great gift to your loved one through your care of them, and that your support will help them to end their journey in peace, knowing that they are loved.