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Do You Call Yourself a “Caregiver?”

Most of us have many roles—some chosen, some not. Sometimes we take on a role and don’t realize it has a name. We understand father, mother, husband, wife. How about caregiver?

There are more than 65 million caregivers in the United States, and you may be one of them. Some may not identify themselves as “caregiver,” yet they provide physical, emotional or financial support for a loved one who is ill.

The transformation into caregiver begins with a single act of caring. A loved one becomes ill and needs help with dressing. Their balance is unsteady, and we help them walk. When we begin, we do not see the middle or the end.

From my perspective as a hospice physician, I know caregiving is complex. It illuminates our intrinsic strengths and exposes our limitations. I have come to realize that caregivers are a fundamental part of our healthcare system, and they need information and tools to do this important job.

Hospice care offers many services that support caregivers. Understanding the different caregiver roles is the first step in seeking support.

Primary Caregiver

You are a primary caregiver if you routinely provide the day-to-day care for a loved one who is ill, and your family is depending on you to assist with activities of daily living, like bathing, dressing and administering medications.

Secondary Caregiver

If your loved one’s care is primarily provided by one person, like your mother or father, that person is the primary caregiver. Most of the time, the primary caregiver is providing day-to-day care, and you are there for back-up. You may be counted on for weekend visits, to run errands, or assist with specific tasks like cooking or cleaning.

Working Caregiver

Are you working full or part-time and helping a loved one with physical care, like bathing, or routine tasks such as bill-paying, housework and errands? Then you are a working caregiver. A working caregiver may also be a primary or secondary caregiver.

Crisis Caregiver

Someone else in your family is providing most of the care, and they count on you to help when a crisis occurs. In the event of a fall or a hospitalization, you are on standby to provide support.

Long Distance Caregiver

You provide support to an ill loved one who does not live nearby, and you may be providing support to the primary caregiver. Your role may include bill paying, scheduling home nursing visits, or researching health care options. You rely on others to provide primary care, but are behind the scenes offering important support.

Occasional Caregiver

Your role is limited to specific tasks or infrequent assistance, like driving a loved one to a doctor visit.

Community Caregiver

You may live next door to someone who is ill, and have offered to be a resource for the primary caregiver. You may shovel their driveway, keep an eye on the house, or deliver essential items to the patient when the primary caregiver can’t be there.

For Caregivers of Hospice Patients

When possible, go to doctors’ appointments with the person you are caring for. These are an opportunity to advocate for your loved one, communicate their wishes, and learn ways to be a more effective caregiver.

If you or your loved one is already in a hospital or nursing home system that has its own hospice, consider them as an option—not the answer. You have a right to choose the hospice provider that is best for you.

If possible, have several family members attend the introduction visit with hospice staff. This is an opportunity for loved ones to learn about hospice services and to get their questions answered.

Don’t wait to request the support of the entire patient care team: nurse, hospice aide, social worker, spiritual care advisor and volunteer. They each have an important role in supporting the patient and the family.

You are in charge of your care plan. Your hospice team is there to ensure that your needs and wishes are being met.

Caregiver burden doesn’t have to occur. Ask if a volunteer can run an errand, clean the house, cut your hair, grocery shop, wash the linens, or provide respite so you can get away for a few hours.

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Boomers Resource Guide is a special supplement to the Senior Citizen's Guide