What's Expected of a Hospice Patient's Primary Caregiver

Your loved one is seriously ill. Once they’re home from the hospital, you realize they are not just your loved one—now they’re your patient.

It can be scary to be responsible for the care and well-being of a terminally ill loved one. You may have the help of members of a trained hospice team who visit regularly, but you are in charge of your loved one’s care.

The services of the hospice team are not meant to take the place of the primary caregiver, but to 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 stay clean and comfortable, such as assistance with bathing and going to the bathroom, applying lotion to dry skin, keeping teeth clean, shaving, washing and combing their hair, providing clean clothes and bed linens and making sure the nails on their hands and feet are trimmed.
2. Medications—As the primary caregiver, you will make sure the patient has all their prescriptions filled and that correct dosages are given at the proper times. This can include anything from pills to syrups to patches to injections.
3. Medical care—This could involve cleaning and changing the bandages on pressure ulcers, taking their temperature, applying ice or heat or taking blood pressure readings.
4. Medical equipment—It is up to the primary caregiver to be well versed in how to use the patient’s medical equipment, including oxygen machines, a wheelchair, lift and hospital bed.

Three Things that Make Life Easier

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

1. Take full advantage of the hospice team members’ visits. The team is a great source of education; take this time to ask lots of questions, since the more you know, the more confident you will feel. And while the hospice aide is giving your loved one a bath or the nurse is checking vital signs, take this time for a cup of tea or a solitary stroll to rest and recharge before resuming your duties. Your hospice team has your back.
2. Get plenty of sleep. Don’t let worries and fear keep you awake and ruminating all night. Rest is critical for you to stay alert and sharp, even if it means napping when your loved one sleeps or asking your doctor for a sleep aid.
3. Ask family and friends for help. Taking care of someone else all day is draining and can cause you to become isolated. Family and friends want to help; don’t be afraid to ask.

Remember: no one can do it for you, but you don’t have to do it alone. The hospice team can be reached any time during the night or day for help. Yes, you will provide most of your loved one's care. But be honest: you wouldn't want it any other way.