Caregiver Role

It can be scary to be responsible for the care of a terminally ill loved one. While a trained hospice team will visit regularly to provide support, you are in charge of your loved one’s care. The Hospice team is not meant to take the place of the primary caregiver, but will instead supplement the care the patient already receives in their home or residential facility.

What to Do If You're the Caregiver

What does it mean to be the primary caregiver of a hospice patient? Here are some of the responsibilities most primary caregivers have:

  1. Personal care of the patient—This involves helping the patient with daily activities such as going to the bathroom, brushing their teeth, shaving, combing their hair and providing clean clothes and bed linens. Your hospice team will not be present in the home 24/7, so activities such as transferring and incontinence care are crucial roles of the caregiver.
  2. Medications—As the primary caregiver, you will ensure that the patient has their prescriptions filled and that correct dosages are given at the proper times. Your Hospice team can provide education and reminders for medication administration.
  3. Medical equipment— The primary caregiver should understand how to use the patient’s medical equipment, including oxygen machines, a wheelchair and hospital bed.

Tips To Make Things Easier

There are a few things you can do to help make the job of primary caregiver a little easier:

- Take advantage of the hospice team members’ visits - Your team is always willing to provide education. Never hesitate to ask questions. Some families find that writing their questions down before a visit helps to guide their conversations. While your loved one is being cared for by our home health aide, take time to relax and re-group. Your hospice team is there to support you and your loved one.

- Get plenty of sleep - Don’t let worries and fear keep you awake all night. Rest is important for you to stay sharp and refreshed, even if it means napping when your loved one sleeps or discussing additional support with your hospice team.

- Ask family and friends for help. Taking care of someone all day can be exhausting and can leave you feeling isolated. Family and friends often want to help, so communicating with your support system is important.

Never hesitate to ask questions or to reach out for help. Your hospice team can be reached any time during the night or day to assist you.