When a patient “enters” hospice, hospice is not a location, but a type of service. Most of the care a hospice patient receives takes place at home. But the primary caregiver for the patient is not a hospice worker. It is generally a family member or friend.

Sometimes the primary caregiver will be the person who was emotionally closest to the patient. Other times it may be the person who is geographically nearest. It might be decided by availability, the patient’s preferences, or simply by necessity if no one else can help. Legal considerations may also play a role in determining the primary caregiver.
There may be a single primary caregiver for the entire time that the patient needs care, or the primary caregiver could switch to a new person at some point based on the needs of the patient and the family.
What are the Duties of the Primary Caregiver?
It is important to be aware that the primary caregiver is the primary person who is seeing to the patient’s needs and wellbeing. Hospice supports the primary caregiver in this job, but does not take over their role.
Here are some of the duties expected of the primary caregiver.
- Manage the patient’s medication use.
- Take care of personal grooming such as bathing and dressing the patient, ensuring they can use the toilet, and helping them eat and drink.
- Manage the finances, including paying bills, dealing with insurance, and so on.
- Making legal care decisions in accordance with the advance directive.
- Coordinating with healthcare providers and hospice workers.
- Delivering groceries, meals, etc.
- Maintaining the patient’s home.
When the patient first enters hospice, depending on their capabilities, they may still be able to independently do some of these things. As time goes on and their condition progresses, however, they may lose more of their abilities. At that point, the role over the caretaker expands, requiring them to take on more duties.
What if the Primary Caregiver Cannot Always Be Present?
Often, there are challenges to family or friends providing care for a patient in hospice. Most people have to work, and may also have other obligations, like taking care of children. Sometimes no one lives in the same state or has any ability to relocate. There is also the matter of burnout. The primary caregiver may barely be able to maintain their own life while also caring for their loved one.
If the primary caregiver cannot always be present, here are some options:
- Coordinate with other family or friends for assistance. Sometimes even neighbors, church members, or acquaintances may be available.
- Pay for additional at-home care.
- Seek a volunteer to provide additional care through a local non-profit or hospital program.
It is becoming more common for situations to arise where there is no primary caregiver available at all. In some states, there are public guardianship programs. A patient with no family or friend who can serve as their primary caregiver can have an attorney appointed as one by the state social services agency. In these scenarios, detailed advance care planning and documentation becomes extra important.
Compassionate Hospice Care in Texas
Homage Hospice is based in McKinney, TX, and provides hospice services throughout
Dallas County, Collin County and Tarrant County. We work hard to support your loved one and family as much as possible during hospice. To learn more about our services for your loved one and family, please give us a call at (469) 625-0705 to schedule your hospice consultation.



